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Master of Arts Thesis Euroculture

University of Strasbourg (Home)

University of Uppsala (Host)

June 2014

The Right Approach?: The Human Rights Approach to Disability at the United Nations and the European Union

Submitted by:

Kendra Cockburn

Supervised by:

Jay Rowell, University of Strasbourg Annika Berg, Uppsala University

Strasbourg, 2 June 2014

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MA Programme Euroculture Declaration

I, Kendra Cockburn, hereby declare that this thesis, entitled ‘The Right Approach?: The Human Rights Approach to Disability at the United Nations and the European Union’ submitted as partial requirement for the MA Programme Euroculture, is my own original work and expressed in my own words. Any use made within this text of works of other authors in any form (e.g. ideas, figures, texts, tables, etc.) are properly acknowledged in the text as well as in the bibliography.

I hereby also acknowledge that I was informed about the regulations pertaining to the assessment of the MA thesis Euroculture and about the general completion rules for the Master of Arts Programme Euroculture.

Signed Kendra Cockburn

Date 2 June 2014

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Acknowledgements Firstly, I would like to thank to all those who participated in interviews for this thesis, including Ron McCallum, Diane Mulligan, Stig Langvad and Laszlo Gabor Lovaszy. Many thanks also to interview participants who are not named in this study, and to all those who participated in unrecorded discussions in Geneva, while I was an intern at the Office of the High Commissioner for Human Rights and during sessions of the Committee for the Convention on the Rights of Persons with Disabilities. I wish to express my particular gratitude to Victoria Lee at the International Disability Alliance and Facundo Chavez Pernillas at the Office of the High Commissioner for Human Rights. Your assistance making contact with people in the field of disability rights was an enormous help. Finally, I would like to thank Jay Rowell and Annika Berg for supervising this thesis and for their advice and guidance throughout the process.

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Table of Contents List  of  Abbreviations  .........................................................................................................  v  Introduction  ........................................................................................................................  1  

Defining disability ................................................................................................................. 1  Disability and human rights .................................................................................................. 3  Previous studies of disability ................................................................................................. 5  Research methodology .......................................................................................................... 8  

1.    A  History  of  Disability  ..............................................................................................  11  1.1 Meanings of disability in western culture ..................................................................... 11  1.2 Disability in early societies ........................................................................................... 12  1.3 Work, charity and science in the nineteenth century ..................................................... 13  1.4 The effect of WWI and WWII - rehabilitation and employment reintegration ............. 15  1.5 Post-war Europe - disability at the UN and the EU ....................................................... 18  

2.  From  Rehabilitation  to  Anti-­‐Discrimination  .....................................................  22  2.1 The disability activist movement .................................................................................. 22  2.2 Policy responses to the social model ............................................................................. 25  2.3 The rise of anti-discrimination approaches ................................................................... 27  2.4 The social model and the human rights model .............................................................. 31  2.5 Human rights at the UN – the effects of globalization .................................................. 34  2.6 The EU – human rights and legitimacy ......................................................................... 39  2.7 The decline of rehabilitation .......................................................................................... 41  

3.  Disability  Rights  in  the  UN  and  the  EU  today  ....................................................  44  3.1 Disability rights and policy symbolism ......................................................................... 44  3.2 ‘Nothing about us without us’ ....................................................................................... 48  3.3 Disability rights at the UN – after the CRPD ................................................................ 50  3.4 Disability rights in the EU ............................................................................................. 57  3.5 The rhetoric and reality of EU disability policy ............................................................ 61  3.6 Employment and the European economy ...................................................................... 64  

Conclusion  .........................................................................................................................  69  

Bibliography  .....................................................................................................................  72  Annex  A:  List  of  key  UN  and  EU  documents  relating  to  disability  ..................  79  

Annex  B:  Interviews  .......................................................................................................  82  Interview Methodology ....................................................................................................... 82  B1. Interview with a senior diplomat from Ecuador ........................................................... 84  B2. Interview with Professor Ron McCallum ..................................................................... 93  B3. Interview with Diane Mulligan ..................................................................................... 97  B4. Interview with Stig Langvad ...................................................................................... 100  B5. Interview with Laszlo Gabor Lovaszy ........................................................................ 106  B6. Interview with a Human Rights Officer at the European Disability Forum ............... 108  

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List of Abbreviations ADA Americans with Disabilities Act AFR Agency for Fundamental Rights, European Union ANED Academic Network of European Disability experts CRPD Convention on the Rights of Persons with Disabilities, UN ICIDH International Classification of Impairments, Disabilities and

Handicaps, WHO IDA International Disability Alliance DPO Disabled Persons’ Organisation ECHR European Court of Human Rights EDF European Disability Forum EU European Union MDGs Millennium Development Goals OHCHR Office of the High Commissioner for Human Rights, UN UN United Nations UPIAS Union of the Physically Impaired Against Segregation, UK WHO World Health Organization

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Introduction

Disability is a human rights issue! I repeat: disability is a human rights issue. Those of us who happen to have a disability are fed up being treated by the society and our fellow citizens as if we did not exist or as if we were aliens from outer space. We are human beings with equal value, claiming equal rights…1 (Bengt Lindqvist, UN Special Rapporteur on Disability, 2000)

By the turn of the twenty-first century disability came to be seen increasingly as a

human rights issue by both policy makers and people with disabilities themselves.

Human rights replaced previous models for understanding disability, which were

often rooted in the fields of medicine or social welfare. This thesis will look at why

human rights has become the predominant framework for addressing disability at

international organisations, in particular the United Nations (UN) and the European

Union (EU). I will firstly look at how understandings of disability and the treatment

of people with disability have evolved over time. I will then consider the growing

emphasis on human rights in the late twentieth century, before analysing how this

approach has been translated in a modern policy environment.

Defining disability

Disability is a historically and culturally shifting concept and there has been

significant debate amongst scholars, academics and people with disabilities

themselves as to how to define it. The medical discipline has traditionally constructed

disability as an individual lack of capacity due to an impairment or health condition

that limits vision, hearing, mobility or other functions. Disability might be physical or

mental and may be short term or long term. In the nineteenth century and for most of

the twentieth century approaches to disability were rooted in this diagnostic model.

Responses to disability were primarily medical, pedagogical and physiotherapeutic,

aiming to cure or reverse the effects of impairment.

                                                                                                               1 Speech by Bengt Lindqvist, Special Rapporteur on Disability of the United Nations Commission for Social Development, at the 19

th Congress of Rehabilitation International, Rio de Janeiro, 25–30 August

2000, quoted in G. Quinn, T. Degener et al. Human Rights and Disability: The Current Use and Future Potential of United Nations Human Rights Instruments in the Context of Disability (Geneva, UN High Commissioner for Human Rights, 2002): 13

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Since the 1970s, people with disability and their representative organisations

have become more politically engaged, and they have questioned and contested

medical definitions of disability. Rather than focusing on medical explanations of

disability, the disability activist movement has called for a ‘social model of

disability’.2 The social model sees disability as the product of an interaction between

individuals and a social environment rather than the result of the incapacities of the

individual.3 The social model identifies the way in which disability can take on

different meanings in different environments and cultures. For instance a wheelchair

user would not be limited by his or her impairment if our cities were not constructed

in the way they are, and if society did not perceive this impairment as abnormal. From

this conceptual standpoint, if social barriers are significant enough anybody could be

considered disabled at some point in their lives. In fact, all people are likely to have a

disability as they age.

Definitions of disability continue to be contested, as they determine who can

legitimately speak on behalf of people with disabilities and who is eligible for

recognition and specific benefits. They serve to orient public policy, and to a certain

extent social representations of disability. The most broadly accepted modern

definition of disability was agreed by the World Health Organization (WHO) in

2001.4 The WHO stressed that ‘Disability is always an interaction between features of

the person and features of the overall context in which the person lives’5 and also

emphasized the universal nature of disability: ‘every human being can experience a

decrement in health and thereby experience some disability.’6 As a starting point, this

thesis will broadly define disability as the relationship between impairment and the

environment consistent with the definition of the WHO, but it will also look at how

understandings of disability and impairment have changed over time, remaining

sensitive to the fluid and changing nature of disability as a concept and the extent to

which definitions frame public policy approaches.

                                                                                                               2 See C. Barnes and G. Mercer, Exploring disability : a sociological introduction. (Cambridge UK, Polity Press, 2010): 18 3 Barnes and Mercer, Exploring disability: 18-29 4 World Health Organization, International Classification of Functioning, Disability and Health (ICF), (Geneva: WHO, 2001) 5 World Health Organization, Towards a Common Language for Functioning, Disability and Health – ICF, WHO/EIP/GPE/CAS/01.3 (Geneva: WHO, 2002): 9 6 World Health Organization, Towards a Common Language for Functioning, Disability and Health: 3

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Disability and human rights

A notable development in disability in recent years is an emphasis on human rights.

Concepts of human rights have been traced back to the enlightenment by many

historians, but it was only after the Second World War, at the time of the emergence

of the United Nations that human rights became a common feature of public

language,7 and it was not until the 1990s that the ‘rights’ of people with disabilities

became the subject of public debate.

‘Human rights’ can refer to a set of abstract principles and beliefs about the

equal and fair treatment of all people, but it is often linked to legislation with differing

levels of tangibility and enforceability. The human rights approach to disability has

also been strongly associated with anti-discrimination law. The first specific piece of

anti-discrimination legislation relating to disability was a United States federal law,

The Americans with Disabilities Act (ADA), which was introduced in 1990. The

ADA prompted the spread of specific anti-discrimination laws around the world,

including in South America, Australia, Canada, the United Kingdom and the

European Union.8 Anti-discrimination laws tend to apply to specific fields of human

activity such as employment, accessibility (ie. right to mobility) and education.

Academics and disability activists commonly represent the increasing

emphasis on human rights and anti-discrimination approaches as a linear progression

beginning with the emergence of a disability activist movement in the 1970s and the

articulation of a social model of disability.9 However, this transition is not as natural

as has been implied in the literature. The social model of disability deconstructed and

problematised the notion of disability, whereas legal and anti-discrimination

approaches, which are the main tools of human rights, tend to require rigid

definitions. The human rights model of disability is the product of particular actors

pushing their agendas, and it represents a shift in power and authority. This thesis will

                                                                                                               7 K. Cmiel, ‘The Emergence of Human Rights Politics in the United States,’ The Journal of American History 86:3 (1999) 8 C. Syzmanski, ‘The Globalisation of Disability Rights Law – From the Americans with Disabilities Act to the UN Convention on the Rights of Persons with Disabilities’, Baltic Journal of Law and Politics 2:1 (2009): 18-35 9 See G. Quinn, T. Degener et al. Human Rights and Disability: 15. Further examples of this association between the social model and the human rights model will be provided in Chapter 2.

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therefore question the teleological interpretation of the rights-based approach and

consider the social and historical context within which this shift has taken place.

The growing dominance of rights-based approaches has been visible at the

level of national governments, but it is particularly evident within international

organisations. This study will focus on two international organizations in particular,

the UN and the EU. The UN is the leading international organisation dealing with

human rights and its role must therefore be considered in this study. While it was

initially created with the intent of promoting peace and collective security, it has also

had a strong focus on human rights since its origins, with the Universal Declaration of

Human Rights agreed in 1948.10 Since the 1970s the United Nations has also entered

into some dialogue about the rights of people with disabilities. The UN’s emphasis on

disability increased over several decades, leading to the ratification of the United

Nations Convention on the Rights of Persons with Disabilities (CRPD) in 2006.11

The European Union began to focus on human rights later than the United

Nations, but it made a rapid shift to a rights-based approach. European Union

documents on disability had not mentioned human rights prior to the late 1990s, but

within a short space of time the EU embraced the language of human rights in its

publications.12 At the beginning of the 21st century the EU became involved in the

negotiations of the UN CRPD and went on to ratify the Convention as a regional

organization. The speed of this shift to a rights-based framework and its role as the

first regional organization to ratify a UN convention makes the European Union a

particularly interesting subject of analysis.

The UN and the EU are not the only international organizations that are

involved in disability policy. Another important actor in this field has been the WHO,

which was the first international organization to incorporate the social model of

disability into policy through its 1980 International Classification of Impairments,

                                                                                                               10 UN General Assembly, Universal Declaration of Human Rights, 10 December 1948, 217 A, accessed 20 May 2014, http://www.refworld.org/docid/3ae6b3712c.html 11 UN General Assembly, Convention on the Rights of Persons with Disabilities, 13 December 2006, A/RES/61/106, accessed 3 April 2014, http://www.un.org/disabilities/convention/conventionfull.shtml 12 See European Commission, ‘A new European Community disability strategy. Communication of the Commission. Draft Resolution of the Council and of Representatives of the Governments of the Member States meeting within the Council on equality of opportunity for people with disabilities’, COM (96) 406 final, 30 July 1996, accessed 11 April 2014, http://aei.pitt.edu/3953/. This shift to a disability rights discourse at EU level will be discussed in detail in Chapter 2.

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Disabilities and Handicaps (ICIDH).13 The Council of Europe is another international

organisation that is focused on human rights and has developed policy on disability.

These organisations played a role alongside the European Union and the United

Nations, but will not be treated as specific case studies because the shift to a rights

based approach was more strongly in evidence at the level of the UN and the EU. The

emergence of human rights based approaches at the WHO and the Council of Europe

could be an area for future analysis.

While this thesis will look at the rise of legal approaches to disability and anti-

discrimination law, it will not provide a legal analysis. Legal scholarship tends to give

a linear reading of the transition to a human rights approach, but gives us little

information on the contextual factors enabling a legal approach. I will therefore

address the social, political and cultural factors surrounding this shift to human rights

and anti-discrimination legislation. I will consider the institutional cultures of the UN

and the EU, including the expertise that guides their work. I will also look at the

historical context and why the human rights approach to disability came to the

forefront at this point in time. In particular, I will explore the effects of globalization

and international networks of civil society in bringing about these changes in

disability policy

 

Previous studies of disability

There is a wide range of scholarship on the issue of disability and the human rights of

people with disability, but there has been little critical analysis of why human rights

approaches emerged in the late twentieth century and early twenty-first century, and

how representations of disability and impairment have evolved historically. Following

the appearance of a political movement advocating for the interests of people with

disabilities in the 1970s, a new field of disability studies expanded in the 1980s. Key

theorists have included Colin Barnes and Mike Oliver, who wrote extensively on the

social model of disability and explored the sociological meanings of disability. Many

of the academics who founded and have contributed to the field of disability studies

are people with disabilities themselves, who have strong connections to the activist

movement. Since the 1980s, academics in the field of disability studies have                                                                                                                13 World Health Organisation, International Classification of Impairments, Disabilities, and Handicaps (Geneva, WHO, 1980)

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continued to debate and question definitions of disability, with Oliver himself

describing the social model as merely a tool, 14 and Tom Shakespeare challenging the

social model of disability and calling for a new approach to disability studies.15 In

recent years there has been increasing focus on the bodily experience of disability and

unique sub-cultures within the disability community. 16 The academic field of

disability studies has predominantly deconstructed and contested notions of disability

and these writers have the most academic prestige. Interestingly, but not surprisingly

however, their expertise is not generally called upon by the UN and the EU, as

international organizations require more rigid definitions and categories to guide their

policies.

As a reflection of the shift to a human rights based approach, there is also a

field of legal and public policy experts who write about disability and who are often

called upon to provide expertise to governments and international organizations,

including the UN and the EU. Several legal academics have written specifically about

the shift to a human rights model of disability. Lisa Waddington has contributed

significantly to this field with a number of publications on disability and human

rights, including her 2005 study: ‘Evolving Disability Policies: From Social-Welfare

to Human Rights: An International Trend from a European Perspective’. 17

Waddington’s holds the European Disability Forum Chair in Disability Law at the

University of Maastricht. The European Disability Forum is funded by the EU,

meaning Waddington’s work in the field of disability policy and law is also supported

by the EU. Gerard Quinn and Eilionóir Flynn from the University of Galway have

analysed the development of anti-discrimination approaches in their 2012 article

‘Transatlantic Borrowings: The Past and Future of EU Non-Discrimination Law and

Policy on the Ground of Disability’.18 Quinn also worked with the German professor

of law Theresia Degener to produce a 2002 study on Human Rights and Disability:

The Current Use and Future Potential of United Nations Human Rights Instruments                                                                                                                14 M. Oliver, ‘The Social Model in Action: If I had a hammer’ in Implementing the Social Model of Disability: Theory and Research, eds. C. Barnes and G. Mercer (Leeds: The Disability Press, 2004): 18-31 15 T. Shakepeare, Disability Rights and Wrongs (New York, Routledge, 2006) 16 N. Watson, ‘The Dialectics of Disability: a social model for the 21st century?’, in C. Barnes and G. Mercer (eds), Implementing the social model of disability (2004): 101-117. 17 L. Waddington, ‘Evolving Disability Policies: From Social-Welfare to Human Rights: An International Trend from a European Perspective’, Netherlands Quarterly on Human Rights 19 (2001): 141-166. 18 G. Quinn and E. Flynn, ‘Transatlantic borrowing: the past and future of EU non-discrimination law and policy on the ground of disability’, The American journal of comparative law 60: 1 (2012): 23-48

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in the Context of Disability.19 In addition to these legal academics, there are several

writers in the field of social policy who write about disability and have an influence

on European Union Policy making, including Mark Priestley at the University of

Leeds. Deborah Mabbett who is an economist and a social policy expert has addressed

‘The Development of Rights-based Social Policy in the European Union: The

Example of Disability Rights’.20 Anna Waldschmidt has undertaken a survey of the

policy of the ‘Disability policy of the European Union at Supranational level.’21 These

writers contribute significantly to our understanding of how disability discrimination

law has been adopted and implemented, however, they generally do not question why

disability came to be perceived as a human rights issue at this point in time. In fact,

they contribute to the legitimacy of the anti-discrimination approach to disability

through their work with international organisations.  

Finally, there is a growing interest from historians in the history of disability,

with Henri-Jacques Stiker’s Corps infirmes et sociétés22 and Sharon Snyder and

David Mitchell’s Cultural locations of disability23 attempting to write a history of

disability engaging with the historical and contextual meanings of disability at

different points in time. There are also a number of specific studies that deal with the

meanings of disability at a particular time and there is significant research relating to

rehabilitation and developments in disability policy as a result of the First and Second

World War.24 These authors do not engage with contemporary disability policy, but

understanding the history of disability policies enables a better understanding the

development of rights based approaches in recent years.

                                                                                                               19 Quinn, Degener et al, Human Rights and Disability 20 D. Mabbett, ‘The Development of Rights-based Social Policy in the European Union: The Example of Disability Rights’, JCMS: Journal of Common Market Studies 43 (2005): 97–120 21 A. Waldschmidt, ‘Disability policy of the European Union: The supranational level’, ALTER. European Journal of Disability research 3: 1 (January 2009): 8-23 22 H-J. Stiker, Corps infirmes et sociétés (Paris, Dunod, 1997). 23 S. L . Snyder and D. T. Mitchell, Cultural locations of disability (Chicago, University of Chicago Press, 2006) 24 See J. Reznick ‘Work Therapy and the Disabled British Soldier in Great Britain in the First World War: The case of Shepherd’s Bush Military Hospital, London’ in Disabled Veterans in History, ed. D. Gerber (Michigan, University of Michigan Press, 2012): 185-203 and J. Anderson, and & A. Carden-Coyne, ‘Enabling the Past: New Perspectives in the History of Disability’. European Review of History: Revue europeenne d'histoire 14, 4 (2007): 447 - 457

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Research methodology

To understand why human rights approaches have become dominant at the UN and

the EU, I conducted additional primary research. The major research method for this

study was document analysis. I focused on the main policy documents released at

United Nations and European Union level from the 1970s to the present day,

primarily including conventions and declarations at the level of the UN and policy

strategies at the EU level. The policy statements and strategies of these organizations

are not updated every year, but instead tend to be revised every five to ten years, so

they offer a macro-level insight into how disability has been dealt with in government

policy over time. Annex A (page 78) provides an annotated list of the key UN and

EU documents considered in this study. It was in the 1970s that international

organizations first started to engage with the issue of disability. In the 1970s and

1980s, the UN and the EU placed a strong emphasis on rehabilitation and workplace

reintegration. It was only in the mid to late 1990s that human rights and anti-

discrimination became a dominant focus of UN and EU policy. The language used to

represent people with disability in these documents was a particular focus of analysis,

including medical descriptions of disability, language that focused on the socially

constructed nature of disability, and depictions of people with disability as holders of

legal rights. I also looked at the solutions proposed to deal with disability in these

documents from rehabilitation to workplace integration, and finally anti-

discrimination legislation.

Policy strategies and conventions, especially at an international level, always

emerge as the result of negotiation and compromise between different actors

including governments and civil society, and are influenced by academic experts,

lobbyists and others. To interpret these policy documents, I have therefore also

considered the published memoirs and manifestos of civil society representatives.

This has included the writings of disability activists who argued for change from the

1970s to the present day, and made the case for a social model of disability. The

personal stories of civil society representatives involved in the negotiations of the UN

Convention on the Rights of Persons with Disabilities (CRPD) were also considered.

To further enrich my analysis, I conducted interviews with seven individuals

working in the field of disability policy at the UN and the EU. Interview subjects

included a senior diplomat within the UN system who was involved the negotiation of

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the UN CRPD, a human rights officer at the European Disability Forum, which is a

European Platform representing persons with disabilities, and five members of the UN

Committee on the CRPD. Three of the UN committee members also had significant

experience working in European disability policy and working with the EU. All but

one of these interviews was recorded. Six of the seven interviews were conducted in

a semi-structured manner. I asked subjects to speak about their personal experience in

disability policy and followed up with further questions to explore issues that they

themselves had raised. During the interviews I also gave cues to interviewees to seek

their views on changes in disability policy, the negotiations of the CRPD, the role of

the European Union, and the policy expertise that guides their work today. The

seventh interviewee who is a deaf person and sign language user, asked to respond to

my questions by email. For this particular interview, four general questions were

posed and a written response was received. Further detail on interview methodology

and a transcript of the six interviews can be found at Annex B (page 82) of the thesis.

Finally, observational research was conducted within the United Nations

Office of the High Commissioner for Human Rights in Geneva. I undertook an

internship with this organization from August to December 2013 within the Human

Rights Council Secretariat. This experience gave me the opportunity to observe a

number of meetings relating to disability and to take part in informal conversations

with policy makers. I observed part of the tenth session of the CRPD Committee in

September 2013 and also travelled to Geneva to observe the eleventh session of the

Committee in April 2014. Observations made during this time further informed my

research on the shift to a human rights framework on disability, but also provided

specific insights into the current United Nations policy environment.

As attitudes to disability are historically and culturally rooted, this thesis will

look at the shift to a rights-based approach to disability within its historical context.

The first chapter will focus on historical perceptions of people with disabilities from

the ancient world to the twentieth century including the development of scientific,

charitable and medical models of disability in the nineteenth century and the policy

emphasis on rehabilitation and workforce integration for most of the twentieth

century. This chapter will draw largely on existing literature from the disciplines of

law, sociology and history.

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The second chapter will trace the emergence of a social model of disability in

the 1970s, the influence of this model in international institutions in the 1980s and the

appearance of human rights-based approaches to disability in the 1990s and 2000s. I

will look at the role of the disability activist movement and the effects of globalization

to understand these changes. A close analysis of key policy documents and the

writings of disability activists and advocates will be undertaken to explore this

change.

The third chapter of the thesis will look at the current day policy situation in

the EU and the UN, including how the human rights approach has been implemented.

This chapter will draw in particular on the interviews that were undertaken and will

consider the symbolic and real dimensions of the human rights approach to disability.

   

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1. A History of Disability

…à la maniere dont une société traite certains phénomènes significatifs, elle se rélève. Le problème du handicap est de ceux-là.25 (Henri-Jacques Stiker, 1997)

People with disabilities have long been subject to stigma and discrimination because

they do not comply with societal norms. This chapter will trace attitudes to disability

from ancient times, before looking closely at the nineteenth century and reactions to

disability associated with the shift to an industrialized workplace and the increasing

dominance of medical understandings of disability. It will then consider the

importance of the medical discourse of rehabilitation in disability policy in the

twentieth century from its expansion in the context of the First and Second World

Wars to its continued popularity in the late twentieth century. Understanding how

people with disability have been perceived and treated in the past is critical to

understanding their contemporary situation, as the legacy of past attitudes remains in

our contemporary societies.

1.1 Meanings of disability in western culture

The body is a site of significant cultural and symbolic meanings. The meanings

assigned to the disabled body vary greatly across cultures, and different attitudes to

disability and impairment can be observed in various parts of the world and at

different points in time. As this thesis looks predominately at disability in Europe, this

chapter will focus specifically on the meanings assigned to the disabled body in

western culture in order to identify attitudes that persist in modern European societies.

Building on research on the history and sociology of the body by high profile

sociologists such as Michel Foucault, a number of academics have studied the cultural

meanings of disability in society. Henri-Jacques Stiker’s Corps infirmes et sociétés

offers a detailed analysis of the meanings of disability in western civilisation. Stiker

traces attitudes to disability from the ancient world to the modern day, finding that

                                                                                                               25 ‘Society reveals itself through the way in which it treats certain significant phenomena. The issue of disability is one of these’: H-J. Stiker, Corps infirmes et sociétés: 19

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western societies are guided by a narrow definition of ‘normal’ and fear those that do

not meet this standard. While each society deals with its fear of difference in its own

way, framed by its own social and cultural structures, there is an overall drive to

‘normalise’ people with disabilities. Stiker ultimately suggests that western societies

are incapable of accepting difference and calls for greater social inclusiveness in the

modern day.

1.2 Disability in early societies

Exclusion of those who are different was evident in early Judeo-Christian societies,

and in classical antiquity. The Old Testament taught that infirmity was associated

with sin, whether by the person or by their ancestors, and the infirm were routinely

prevented from entering holy places.26 For the ancient Greeks and Romans, disability

was intimately linked with religion. While physical difference could inspire awe and

demand worship when manifested by gods, physical abnormalities in newborn

children were perceived as a sign of the displeasure of the gods, and young babies

who were seen as abnormal were exposed and left to die.27

Little information survives about attitudes towards people with disabilities in

the Middle Ages, but we know that certain conditions such as leprosy were

particularly feared. Stiker argues that disability in medieval societies was often

associated with monstrosity, and people with disability served as a contrast against the

glory of god.28 In the Middle Ages, people with disability were also perceived as part

of the larger group of the poor, meaning they could be seen as objects of charity but

were more and more perceived as dangerous and deviant.29 During the enlightenment,

a number of new trends began to emerge, including the beginnings of a medical and

scientific discourse of disability, and early efforts to confine and institutionalize

people with disability.30

                                                                                                               26 Stiker, Corps infirmes et sociétés: 28-33 27 Stiker, Corps infirmes et sociétés: 44-68 28 Stiker, Corps infirmes et sociétés: 71-76 29 D. Braddock and S. Parish, ‘An institutional history of disability’ in Handbook of Disability Studies, eds. G. Albrecht, K. Seelman and M. Bury (Thousand Oaks, Sage, 2001): 22-23 30 Braddock and Parish, ‘An institutional history of disability’: 25

  13  

1.3 Work, charity and science in the nineteenth century

The nineteenth century saw the dominance of a medical discourse of disability, the

rise of an industrialized workforce and the expansion of welfare systems. The

changing treatment of people with disability during the nineteenth century is of

particular relevance, as it was at this time that the state increasingly sought to

intervene in the lives of people with disabilities and develop policies to deal with the

‘problem’ of disability. In this era the push to ‘normalise’ people with disabilities was

strongly in evidence.

Many writers suggest that modern western attitudes to disability can be traced

in particular to the industrial era and the development of an industrial labour market.

The social geographer Brendan Gleeson has argued that the exclusion of people with

disabilities results from the ‘material organization of capitalist society’.31 He claims

that prior to industrialization, people with disabilities were included in in the social

space of village life, but the transition to industrialism changed the social space of

disability by placing a stronger emphasis on mechanized production and productivity.

Standardized production techniques assumed a non-impaired physical body and the

emphasis on speed and efficiency excluded slower workers. People with disabilities

became stigmatised as useless and unproductive members of society, given their

inability to take part in many of the economic activities that were critical to the

industrial workplace.32 Some were confined within the home, undertaking poorly

valued and underpaid work, while others took to the streets as vagrants and beggars.

This interpretation of disability has been particularly common amongst

Marxist scholars, however, there are also a number of writers who reject this analysis

as overly simplistic. They recognise the impact of industrial labour markets, but also

draw attention to the importance of cultural attitudes towards disability.33 Fear and

stigma towards the unknown and different was evident long before the existence of

capitalist systems, as identified in the analysis of Stiker.

One indisputable effect of industrialization was that charity and welfare came

to occupy a more important place in many European societies, as families in new

industrial cities were unable to care for people with disabilities. A wide variety of

                                                                                                               31 B. Gleeson, Geographies of disability (London, Routledge,1999): 101 32 Gleeson, Geographies of disability: 99-126 33 C. Barnes, ‘A legacy of oppression: a history of disability in Western culture’, in Disability Studies: Past, Present and Future, ed. L. Barton and M. Oliver (Leeds, 1997): 4–24

  14  

different arrangements evolved in various countries and regions. Administered by

church or state, they all sought to deal with the issue of those who could not support

themselves in the modern industrial economy. The charity systems of the nineteenth

century assisted those who were unable to keep up with the modern industrial

economy, but they also stigmatized the poor for their dependency. There was a

hierarchy of dependency with the physically disabled considered to be more ‘worthy’

than the able-bodied poor, but nevertheless their social worth was questioned due to

their inability to take part in ‘normal’ work.34

Another important trend in the treatment of people with disabilities during the

nineteenth century was the growing dominance of medical understandings of

disability. A medical and scientific discourse of disability had its origins in the

Enlightenment, but these ideas gained greater currency in the nineteenth century.

Doctors ceased to explain disability solely with reference to religion, and there was

more and more emphasis on the physical causes of disability and options for curing or

reversing disability. From the late nineteenth century, there was a strong

preoccupation with the problem of ‘feeblemindedness’, which was a fluid medical

category that could be used to identify abnormal behaviour and to justify treatment.35

It is in this era that we see the emergence of ideas about rehabilitation, which would

become a dominant feature of disability policy in the twentieth century.36

The practice of institutionalisation, in which people with disability were

removed from mainstream society and housed in public or private institutions, such as

hospitals, hospices and asylums, was associated with medical understandings of

disability and increasing state involvement in the lives of people with disability.

Institutions were often founded with the intention of training people with disabilities

for independence and to be part of ‘normal’ life through rehabilitation and

reintegration, however, they also effectively removed people with disability from

mainstream society.37 This is a key example of how society sought to normalise

people with disabilities. If they were unable to adapt they were effectively excluded.

Another aspect of the medical discourse on disability was the rise of eugenics

in the late nineteenth century. Eugenics sought to eradicate disability through modern

                                                                                                               34 Snyder and Mitchell, Cultural locations of disability: 39-56 35 A. Carey, ‘Beyond the Medical Model: a reconsideration of ‘feeblemindedness’, citizenship and eugenic restrictions’, Disability and Society 18:4 (2003): 412 36 Stiker, Corps infirmes et sociétés: 115-116 37 Snyder and Mitchell, Cultural locations of disability: 118

  15  

science38 and focused in particular on the problem of ‘feeblemindedness’. In the

eugenics movement we once again see a socially accepted idea of normal and

abnormal. However, in the eugenics movement abnormality was not only a private

concern for the individual and their families, it became a concern of the state. The

physical body came to be seen as highly representative of the nation and the body

politic. In this context, disability and abnormality was seen as a specific threat to the

state and eugenics sought to cleanse the state by ridding it of impure elements.39

‘Feeblemindedness’ was perceived to be hereditary and scientific discourses on

heredity and Darwin’s theory of evolution also fed concerns that people with

disability would contaminate the wider population. Institutionalisation was an

important tool of the eugenics movement, but eugenics was also associated with the

sterilisation of people with disability based on fear that they would pass on their

abnormalities and contaminate society. 40 This medical and eugenic approach to

disability would become even more widespread early in the twentieth century.

1.4 The effect of WWI and WWII - rehabilitation and employment reintegration

After the First World War, disabled war veterans formed a large and highly

visible group in many European nations. Disability as a result of war was certainly

not a new phenomenon, nor was the intervention of the state to assist veterans. As

early as 1724, France had put in place a pension scheme for disabled veterans.41

However, the scale and brutality of World War I meant an unprecedented number of

veterans suffering from physical impairments, brain injuries and mental illness were

visible in European societies. Disabled veterans provoked ambivalent feelings in the

population. Disability remained a source of fear for many, yet these individuals had

fought for their countries, and therefore had a strong claim for recognition and respect

from the community. Veterans with a disability were also in a different position from

people who were born with disability, as they had experienced society’s reaction

towards them as able-bodied citizens, and could observe the stark contrast compared

with their treatment once they had acquired a disability. In many cases, disabled

                                                                                                               38 Snyder and Mitchell, Cultural locations of disability: 31 39 Snyder and Mitchell, Cultural locations of disability: 79-83 40 Snyder and Mitchell, Cultural locations of disability: 73 41 Stiker, Corps infirmes et sociétés: 105

  16  

veterans banded together in political groups demanding recognition, forming an

effective political lobby because of their sacrifices.42

Public policy following the First World War was largely aimed at returning

disabled veterans to full function through rehabilitation. Rehabilitation emphasized

medical techniques, physiotherapy, and assistive technologies that would counter the

effects of disability, including the new and emerging fields of orthopedics and

prosthetics. These techniques essentially aimed to restore people with disability to a

‘normal’ bodily state. The practice of rehabilitation for people with disabilities was

already present in the nineteenth century as part of the medical discourse of disability,

and gained further prominence in the late nineteenth century as medical models of

disability became more prominent, and as arrangements were put in place for those

injured in workplace accidents. It was following the First World War, however, that

rehabilitation became a dominant policy approach to disability.

Jeffery Reznick has looked at the example of the Shepherd’s Bush Military

hospital in the United Kingdom, which was established in 1916 and was the first large

center in Britain focused on orthopedic treatment and physiotherapy. The hospital was

built on nineteenth century ideas about charity and medicine and on the experience of

rehabilitating injured workers, but it had a greater emphasis on work and productivity,

and also involved ‘curative workshops’ in which disabled veterans were trained for a

return to the workplace.43

The underlying message of the rehabilitation movement was that by improving

the productivity and reducing the physical impairments of soldiers, they could become

once again accepted into mainstream society. Rehabilitation also provided a positive

narrative for the non-disabled population about the reintegration of veterans. In the

USA, the rehabilitation program was accompanied by public education campaigns

that provided stories to citizens about veterans overcoming their war injuries.44 Henri-

Jacques Stiker argues that the rehabilitation approach aimed to ‘efface’ disability and

remove the abnormal, changing the individual and make them adapt to society’s

norms.45

                                                                                                               42 D. Cohen, War Come Home: Disabled Veterans in Britain and Germany, 1914-1939, (Berkeley, University of California Press, 2001): 1-12 43 Reznick, ‘Work Therapy and the Disabled British Soldier’: 185-203 44 A. Carden-Coyne, ‘Ungrateful Bodies: Rehabilitation, Resistance and Disabled American Veterans of the First World War’, European Review of History: Revue europeenne d'histoire 14: 4 (2007): 547-11 45 Stiker, Corps infirmes et sociétés: 133

  17  

Apart from the specific medical treatment offered to veterans, many

governments took broader measures to encourage employers to give jobs to disabled

veterans. Kowalsky has analyzed one such initiative in Britain, the King’s National

Roll Scheme, which provided incentives for employers to recruit employees with

disabilities. Similar schemes existed in other European countries such as Germany.

The policy logic behind such initiatives was that through workforce reintegration,

people with disability would gain financial independence and become valued and

productive members of society again. Many of these schemes effectively transformed

into broader disability employment policies following the Second World War.

Simultaneous to this emphasis on rehabilitation for war veterans in the inter-

war period, there was an increased focus on segregated education for children with

disabilities. Like other institutions for people with disabilities, segregated schools

were often founded with the intent of training children who were ‘feebleminded’ to

integrate to mainstream society, but they also removed children with disabilities from

other children, reinforcing ideas of the normal and abnormal. Some segregated

education facilities had existed for centuries before, particularly catering to deaf and

blind children, but it was at this time when they became an established feature in

European policies and their role was defined in law, for example through the Mental

Deficiency Act in Britain which was passed in 1913.46

Eugenics also expanded in the inter-war period and became more deeply

embedded in the laws and policies of many European nations. In the early twentieth

century most European nations had eugenic societies and eugenic programmes and

sterilization laws existed in all the Nordic nations and several other European states.47

This eugenic approach reached its peak in Germany under the National Socialist

regime with large numbers of people with disabilities murdered because of their

disabilities. The atrocities of the Nazis thoroughly discredited the eugenics movement,

however, it cannot be denied that some elements of the eugenic approach to disability

continued into the modern day. Coercive sterilisation of people with disability, in

particular women with intellectual and developmental disabilities, still takes place

today in many countries and remains a controversial issue.48 Modern pre-natal

                                                                                                               46 D. Armstrong, Experiences of Special Education (London, Routledge, 2006): 10-15 47 L. Grue, ‘Eugenics and euthanasia – then and now’, Scandinavian Journal of Disability Research, 12:1 (2009), 34-5 48 V. Kallianes & P. Rubenfeld, ‘Disabled Women and Reproductive Rights’, Disability & Society, 12:2 (1997): 203-222

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screening technologies have also given the parents the right not to proceed with a

pregnancy if the foetus is abnormal, thus raising difficult ethical questions.49

1.5 Post-war Europe - disability at the UN and the EU

After the Second World War, European nations moved to set up welfare regimes,

which emphasized solidarity rather than charity, but also built on pre-war

arrangements. There was some variance between disability arrangements in the

different nations of Europe, but an overall emphasis on rehabilitation and workplace

integration was shared across Europe. In France, for example, in the post-war period,

the focus was on integrating people with disability into the workplace, with laws put

in place to encourage employers to hire people with disability and the establishment

of sheltered workplaces, where people with disabilities could perform tasks based on

their level of ability, while isolated from non-disabled people.50 This focus on

sheltered employment was common to many northern European nations.51 European

states also developed schemes to provide subsistence for people unable to participate

in the workplace. This increased provision of government benefits required stricter

definitions of what did and did not constitute a disability, in order to determine who

was eligible for state assistance. Stiker has argued that it was only in this period that

the medical classification of ‘handicap’ emerged, crystalizing a long history of

unequal treatment into an official model of exclusion.52

Following the Second World War, the nations of Europe moved towards

greater economic and political integration through the European Community, which

would later become the European Union, and in the 1970s the European Community

took an interest in disability. The European Community’s early statements on

disability reveal a strong continuing emphasis on rehabilitation and on reintegrating

people with disabilities into the workplace. A European Community publication

dating from 1972 entitled ‘La communauté européenne et les handicapés’

                                                                                                               49 T. Shakespeare, ‘Choices and Rights: Eugenics, genetics and disability equality’, Disability & Society, 13:5 (1998), 665-681 50 P. Doriguzzi, L’histoire politique du handicap: de l’infirme au travailleur handicapé (Paris : L’Harmattan, 1994): 123-131 51 Waddington, ‘Evolving Disability Policies’:141-146. 52 H.J. Stiker, ‘Aspects socio-historiques du handicap moteur’ in Déficiences montrices et handicaps, Aspects sociaiux, psychologiques, médicaux, techniques et législatifs, troubles associés, ed. Association des paralyses de France (Paris, Association des paralyses de France, 1996): 22-29

  19  

demonstrated a focus on workforce integration and emphasized the potential of

improved therapeutic techniques and new modes of industrial production to enable

greater workforce integration for people with disabilities.53

In 1974 the European Community launched an ‘initial community action

programme for the vocational rehabilitation of handicapped persons’ attempting to

harmonise, coordinate and modernize rehabilitation arrangements.54 In the context of

this new community action programme, a comparative study was undertaken on the

rehabilitation of handicapped people in the countries of the European Community.

This study summarized the diverse arrangements in place in the member states of the

community that had developed from different charitable, religious and legislative

traditions. The report looked towards more harmonized arrangements across Europe

and stressed the need to move ‘from the concept of charity to that of solidarity’.55

Despite this emphasis on change, the medical narrative of the interwar years

continued with its focus on ‘the modern concept of early, continuous and

comprehensive rehabilitation’56. The document also shares a strong emphasis on

workforce reintegration as a pathway to greater integration. There was an increased

proportion of European Community documents relating to disability from this point

forward, generally emphasizing the challenge of ‘occupational rehabilitation for

normal work’.57 The European Union documents of this era represent disability as a

medical problem that can be reversed primarily through medical techniques and

which is only really considered in terms of its effect on workers and their

productivity.

While the European Community was talking about rehabilitation and

disability, the UN was also becoming more engaged in this field. The UN was

established following the Second World War, in response to many of the atrocities

that had been committed during that conflict. Unlike the European Community, which

                                                                                                               53 European Commission, ‘La communauté européenne et les handicapés: The European Community and the handicapped’, January 1972, accessed 3 March 2014, http://aei.pitt.edu/7721/ 54 European Commission, ‘Report from the Commission to the Council on the initial community action programme for the vocational rehabilitation of handicapped persons (period 1974-1979)’, COM (79) 572 final, 26 October 1979, accessed 3 March 2014, http://aei.pitt.edu/31904/ 55 J. Boisseau, ‘Comparative study on the rehabilitation of handicapped persons in the countries of the Community. Legal, administrative and technical aspects. Volume I: Introduction, Belgium, France, Italy, Luxembourg.’ 3229/74, EU Commission Working Document, http://aei.pitt.edu/36405/: 8-9 56 Boisseau, ‘Comparative study on the rehabilitation of handicapped persons’: 5 57 P.J. Hillery, ‘Speech by Dr. Hillery, Vice-President of the Commission, to the 5th International Seminar Rehabilitation of the Disabled.’ London, 2 July 1974, accessed 3 March 2014, http://aei.pitt.edu/12985/

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was focused largely on trade and economic integration, the UN was specifically

focused on human rights. In 1948, through the Universal Declaration of Human

Rights, member states ‘pledged themselves to achieve, in co-operation with the

United Nations, the promotion of universal respect for and observance of human

rights and fundamental freedoms’.58 Interestingly, although people with disabilities

had been victims of wartime atrocities, they were not subject to specific recognition in

early human rights treaties and disability was not recognized in the list of grounds for

discrimination which include ‘race, colour, sex, language, religion, political or other

opinion, national or social origin, property, birth or other status’.59

It was only in the 1970s that the United Nations engaged more directly with

the question of disability and mental health through the 1971 United Nations

Declaration on the Rights of Mentally Retarded Persons60 and the 1975 Declaration

on the Rights of Disabled Persons.61 These documents reflect continuing views of

people with disabilities as abnormal or deficient. For example, the 1975 declaration

defines disability in the following way:

The term "disabled person" means any person unable to ensure by himself or herself, wholly or partly, the necessities of a normal individual and/or social life, as a result of deficiency, either congenital or not, in his or her physical or mental capabilities.62

These declarations proclaim the rights of people with disabilities to non-

discrimination and inclusion. However, the declarations also demonstrate an overall

emphasis on rehabilitation and medical treatment. The 1975 declaration states:

Disabled persons have the right to medical, psychological and functional treatment, including prosthetic and orthetic appliances, to medical and social rehabilitation, education, vocational training and rehabilitation, aid, counselling, placement services and other services which will enable them to develop their capabilities and skills to the maximum and will hasten the processes of their social integration or reintegration.63

This statement reveals little change from the rehabilitation model of disability policy

that emerged in the early twentieth century and that attempted to normalise disability

and reverse impairment.

                                                                                                               58 UN General Assembly, Universal Declaration of Human Rights: preamble 59 UN General Assembly, Universal Declaration of Human Rights: article 2 60 UN General Assembly, Declaration on the Rights of Mentally Retarded Persons, 1971, GA res. 2856 (XXVI), accessed 1 May 2014, http://www.un.org/documents/instruments/docs_subj_en.asp?subj=32 61 UN General Assembly, Declaration on the Rights of Disabled Persons, 1975, GA res.2856 (XXVI), accessed 1 May 2014, http://www.un.org/documents/instruments/docs_subj_en.asp?subj=32 62 UN General Assembly, Declaration on the Rights of Disabled Persons 63 UN General Assembly, Declaration on the Rights of Disabled Persons

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The 1980s and 1990s were a transitional period. The influence of the emerging

political disability movement can be discerned, and disability received growing

attention from the European Community and the United Nations, as will be discussed

in Chapter 2. However, it is fair to say rehabilitation and workforce integration were

still emphasized in policy documents during these decades. In the early 1980s

rehabilitation in particular received the most emphasis and a 1980 publication spoke

of ‘the development of new rehabilitation techniques’.64 By the late 1980s documents

focused more strongly on workforce reintegration and on ‘the field of employment

and vocational training, including initial training and employment’, however they

continued to mention ‘rehabilitation and resettlement’.65 This ongoing emphasis on

rehabilitation and workforce integration was in continuity with the policies that had

developed during and following the First and Second World Wars.

From fear and exclusion of people with disability in early western cultures, to

the charity and medical systems of the nineteenth century and through to the

rehabilitation and workplace integration measures of the twentieth century, societies

sought to address disability through normalizing measures that erased it or attempted

to make people with disability confirm to bodily and societal norms. This approach

was also highly evident in the early policies of international organizations such as the

European Union and the United Nations, which strongly emphasized rehabilitation

and workforce integration up until the late twentieth century. Chapter 2 will look at

the shift away from policy models based on rehabilitation and workforce integration

to a human rights approach and the policy factors that allowed this shift to take place.

   

                                                                                                               64 European Commission, ‘The European Community and the handicapped’, European File 8/80, May 1980, accessed 4 March 2014, http://aei.pitt.edu/4596/ 65 European Commission, ‘Report from the Commission on the application of Council Recommendation 86/379/EEC of 24 July 1989 on the employment of disabled people in the Community,’ COM (88) 746 final, 15 December 1988, accessed 4 March 2014, http://aei.pitt.edu/10400/

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2. From Rehabilitation to Anti-Discrimination

Times are changing. The disability rights movement has sunk deep roots in many countries around the world, especially over the past decade. It is in many ways a “visibility project”. Its prime message is to remind us of something we do not need reminding about, namely that persons with disabilities are human beings and therefore share the same human rights as everybody else and the right to enjoy them to the same degree.66 (Gerard Quinn and Theresia Degener, 2002)

In the late twentieth century, policy makers stopped talking solely about rehabilitation

and workforce reintegration and started talking increasingly about human rights and

disability. This chapter will examine this change, starting with the rise of the

disability activist movement and the emergence of a social model of disability and

concluding with the translation of this model into policy at the level of the UN and the

EU. It will be argued that globalization and international networks of civil society

enabled the spread of human rights and anti-discrimination approaches to disability.

2.1 The disability activist movement

In the 1970s, while the UN and the EU were continuing to talk about rehabilitation,

there was also an emerging activist movement that was questioning the treatment of

people with disabilities. Disability activist movements organized by disabled war

veterans had emerged following the First World War67 and following the Second

World War parents of children with disabilities had grouped together to demand better

conditions for their children, and to push for deinstitutionalization of people with

disability,68 however, activism escalated in the 1970s in many parts of the world. This

period of activism can be seen in the political context of this era. It was at this time

that other social movements seeking racial and gender equality came to the forefront.

Groups that were marginalized from political processes challenged the political and

social establishment through protest and political mobilization. These social

movements have often been associated with the emergence of post-materialist values

                                                                                                               66 Quinn, Degener et al. Human Rights and Disability: 26 67 Cohen, War Come Home: 1-12 68 D. Z. Fleischer and F. Zames, The disability rights movement : from charity to confrontation. (Philadelphia, Temple University Press, 2001): 34-38

  23  

due to increased affluence in western society.69 Social movements have also been

linked to the creation of group identities, and these movements formed networks to

pursue a common cause.70

The origins of the political disability movement can be traced to Britain,

where activists increasingly questioned the way in which society defined disability,

leading to the development of the ‘social model’, a new theoretical framework for

disability. The social model of disability essentially distinguished between

impairment, as a specific restriction experienced by an individual, and disability, as

the result of society’s reaction towards impairment. This ‘social definition of

disability’ 71 was explained by the Union of the Physically Impaired Against

Segregation (UPIAS) and the Disability Alliance in the United Kingdom in 1975:

In our view, it is society which disables physically impaired people. Disability is something imposed on top of our impairments, by the way we are unnecessarily isolated and excluded from full participation in society. Disabled people are therefore an oppressed group in society.72

The disability rights movement was inspired by other social movements seeking

equality and recognition, and was initially heavily influenced by left wing political

ideology. Disability activists and scholars often analysed disability within a Marxist

framework, with prominent scholars such as Mike Oliver calling for a ‘socialist policy

towards disabled people’.73 Vic Finkelstein, who was active in the disability rights

movement in Britain in the 1970s and who was one of the drafters of the 1975 UPIAS

statement was a South African who had been heavily involved in the anti-apartheid

movement in South Africa and was imprisoned for his political activism before taking

refuge in Britain and becoming involved in the disability rights movement. He has

argued that his experience in South Africa fighting against an oppressive regime

                                                                                                               69 D. Della Porta and M. Diani, Social Movements: an introduction (Oxford, Blackwell, 2006): 68-70 70 Della Porta and Diani, Social Movements: 91-98 71 UPIAS and the Disability Alliance, ‘The Union of the Physically Impaired Against Segregation and the Disability Alliance discuss fundamental principles of disability – being a summary of the conversation held on 22 November, 1975 and containing commentaries from each orgnaisation’, http://disability-studies.leeds.ac.uk/files/library/UPIAS-fundamental-principles.pdf, accessed 2 April 2014: 12 72 UPIAS and the Disability Alliance: ‘The Union of the Physically Impaired Against Segregation and the Disability Alliance discuss fundamental principles of disability’: 4 73 M. Oliver, ‘The Politics of Disability’, paper given at the annual general meeting of the Disability Alliance, 15 April 1983, http://disability-studies.leeds.ac.uk/files/library/Oliver-dis-alliance.pdf, accessed 2 April 2014: 5-8

  24  

fundamentally influenced the development of a social model of disability. 74

Interestingly, many of the early disability activists were people who had acquired

their disability during their lifetime. For example Finkelstein suffered a spinal cord

injury in a sports accident. Seeing how they were treated by society before and after

disability made them more aware of the socially constructed nature of disability, as

would have also been the experience for war veterans in previous generations.

The disability activist movement also prompted the emergence of an academic

field of disability studies. The academic study of disability has largely focused on the

sociological meanings of disability, but academics have also played a role arguing

directly for policy change. Many early academics writing about disability in the

United Kingdom, including Mike Oliver and Colin Barnes from the University of

Leeds are persons with disabilities themselves and were also strongly associated with

the political disability movement. The University of Leeds became a prominent center

of research in this field in the 1980s and continues to be a leader in disability research

in the present day.

The disability activist movement never formed a united group and there have

been significant debates amongst persons with disabilities and academics about how

to define disability and what might be appropriate policy responses from

governments. Approaches have also varied greatly between countries. In Britain

activists and academics employed a relatively static framework to distinguish between

impairment and the disabling effect of society, whereas in Scandinavia new ‘social’

models conceived of disability as part of a dynamic relationship between person and

the environment.75 In the United States, rather than focusing on the distinction

between physical impairment and socially determined disablement, activists

represented people with disabilities as a minority group and stressed their civil

rights.76

Regardless of the approaches taken, this movement can be seen as a reaction

against the predominantly ‘normalising’ approach previously taken by policy makers.

Rather than expecting people with a disability to adapt to societal norms, there was a

                                                                                                               74 V. Finkelstein, ‘Reflections on the Social Model of Disability: The South African Connection’, 13 April 2005, accessed 21 April 2005, http://disability-studies.leeds.ac.uk/files/library/finkelstein-Reflections-on-the-Social-Model-of-Disability.pdf 75 R. Traustadottir, ‘Disability Studies, the Social Model and Legal Developments’ in The UN Convention on the Rights of Persons with Disabilities: European and Scandinavian Perspectives, eds. O.M. Arnadottir and G. Quinn (Leiden, Brill Nihoff, 2009): 13 76 Traustadottir, ‘Disability Studies, the Social Model and Legal Developments’: 14

  25  

call for society to be more inclusive, welcoming and adaptive to people with

disabilities.

2.2 Policy responses to the social model

New ideas about disability began to gradually influence the policies of governments

and international organizations. During the 70s and 80s international organizations,

including the UN and the EU had continued to place a strong emphasis on

rehabilitation and workplace reintegration, but changing views about disability

expounded by the activist movement, in particular the social model of disability, also

began to have some influence on the policy of international organisations from the

1980s.

The first international organization to respond to the social model of disability

was the WHO with its 1980 International Classification of Impairments, Disabilities

and Handicaps (ICIDH). The ICIDH was generally criticized by activists for its

emphasis on ‘deficiency’ at the level of the individual. However, it did recognize a

distinction between disability and impairment, setting out a three-tiered distinction.

Impairment - In the context of health experience, an impairment is any loss or abnormality of psychological, physiological, or anatomical structure or function Disability - In the context of health experience, a disability is any restriction or lack (resulting from an impairment) of ability to perform an activity in the manner or within the range considered normal for a human being Handicap - In the context of health experience, a handicap is a disadvantage for a given individual, resulting from an impairment or a disability, that limits or prevents the fulfillment of a role that is normal (depending on age, sex, and social and cultural factors) for that individual.77

This way of defining disability was clearly influenced by the social model, but takes

on a greater rigidity as it was designed for the purposes of policy makers and health

professionals, who wanted to define and classify rather than to challenge social

structures. This classification had a strong influence on the policy of governments and

international organizations throughout the 1980s and 1990s until it was revised in

2001.

The United Nations increased its emphasis on disability over the course of the

1980s starting with the World Programme of Action on Disability in 1982, which

                                                                                                               77 World Health Organisation, ICIDH: 143

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focused largely on the issue of disability in the developing world. While this

document still contained a strong emphasis on rehabilitation and workforce

reintegration, there was also a significant emphasis on ‘equalization of opportunities’

and the impact of disability in other domains such as education and culture. The

World Programme of Action on Disability also draws heavily on the definitions set

out by the World Health Organization and its distinction between impairment,

disability and handicap:

To achieve the goals of "full participation and equality", rehabilitation measures aimed at the disabled individual are not sufficient. Experience shows that it is largely the environment which determines the effect of an impairment or a disability on a person's daily life. A person is handicapped when he or she is denied the opportunities generally available in the community that are necessary for the fundamental elements of living…78

This document was a non-binding policy agreement, but it does represent a change in

language from the UN declarations of the 1970s. The WHO classification also

influenced the Council of Europe’s 1992 recommendation on a coherent policy for

people with disabilities,79 and in 1993 the UN went on to develop the Standard Rules

on the Equalization of Opportunities for Persons with Disabilities.80 The Standard

Rules summarized the message of the World Programme in a set of rules for

governments, but these rules were non-binding. One noteworthy difference between

the World Programme and the Standard Rules is that the emphasis on rehabilitation

that had been present in the World Programme in the 1980s had largely disappeared

from the Standard Rules in the 1990s, suggesting a shift in discourse away from

medical approaches at United Nations level.

The European Union continued to largely stick to the rehabilitation and

workforce integration model for people with disabilities in the 1980s and early 1990s

through its HELIOS programme.81 A key development, however, was the provision of

funding to Disabled Persons’ Organisations (DPOs), leading to the establishment of

                                                                                                               78 UN General Assembly, World Programme of Action Concerning Disabled Persons, 3 December 1982, resolution 37/52, http://www.un.org/disabilities/default.asp?id=23, accessed 1 April 2014 79 Council of Europe Committee of Ministers, Recommendation No. R (92) 6 on a coherent policy for people with disabilities, 9 April 1992, http://www.independentliving.org/docs3/coe92r6.pdf , accessed 11 April 2014 80 UN General Assembly, The Standard Rules on the Equalization of Opportunities for Persons with Disabilities, adopted 20 December 1993, resolution 48/96, http://www.un.org/esa/socdev/enable/dissre00.htm, accessed 1 April 2014 81 European Commission, ‘Report by the Commission to the European Parliament and the Council on the implementation and results of the HELIOS Programme (1988-1991),’ SEC (92) 1206 final, 6 July 1992, accessed 21 May 2014, http://aei.pitt.edu/5814/,\

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the European Disability Forum (EDF) in 1996. Around this time the language of EU

disability documents began to change.82 The HELIOS II programme, which ran from

1993 to 1996 contained a greater emphasis on ‘equal opportunities’ and ‘Human

Rights’.83 This emphasis was further strengthened in 1996 when the Commission

released a Communication on ‘Equality of Opportunity for People with disabilities -

A new Disability Strategy’. This document called on member states to comply with

the UN Standard Rules and set out non-binding guidelines for member states about

how to improve the situation of people with disabilities. This communication strongly

reflected the influence of the social model of disability, stating that ‘changes in the

way we organise our societies can substantially reduce or even overcome obstacles

found by people with disability.’84 The communication calls for ‘mainstreaming’ of

disability policy into other key areas such as employment and information technology.

2.3 The rise of anti-discrimination approaches

Europe was also profoundly influenced by developments in disability policy coming

from the United States of America. In the USA, where people with disability were

perceived as a minority group, government lobbying from the disability civil rights

movement focused on the need for civil rights legislation. As a result, people with

disabilities were increasingly recognized in legislation throughout the 1970s and

1980s. The 1973 Rehabilitation Act in the United States was the earliest example of

legislation with a specific reference to disability. 85 Further calls for legislation

culminated with the introduction of the Americans with Disabilities Act (ADA) in

1990, a piece of legislation dealing entirely with discrimination against people with

disabilities. One factor that may have enabled the development of disability

legislation at this point in time was the significant number of disabled veterans of the

                                                                                                               82 Mabbett, ‘The Development of Rights-based Social Policy’: 104 83 European Commission, ‘Communication from the Commission to the European Parliament, the Council, the Economic and Social Committee and the Committee of the Regions. Interim evaluation report on the HELIOS II programme,’ COM (96) 8 final, 23 January 1996, http://aei.pitt.edu/48660/, accessed 21 April 2014: 3 84 European Commission, ‘A new European Community disability strategy. Communication of the Commission. Draft Resolution of the Council and of Representatives of the Governments of the Member States meeting within the Council on equality of opportunity for people with disabilities’, COM (96) 406 final, 30 July 1996, accessed 11 April 2014, http://aei.pitt.edu/3953/, 85 J. Bickenback, ‘Disability Human Rights, Law and Policy’ in Handbook of Disability Studies, eds. G. Albrecht, K. Seelman and M. Bury (Thousand Oaks, Sage, 2001): 569

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Vietnam War who were visible in the United States in the 1970s and 1980s.86 The

ADA represented a legal model for addressing disability, allowing people with

disabilities to take legal action against those who had discriminated against them. The

ADA was different from previous legislation as it specifically concerned the issue of

disability. It focused on employment, physical access, transport and access to goods

and services, including telecommunications. It offered a new approach to defining

disability, influenced by the social model of disability, which moved away from a list

of medical conditions and focused on the way in which impairments limit life activity.

It was also different in its emphasis on ‘reasonable accommodation’. Taking the

example of employment, employers would be required to make changes considered

‘reasonable’ in order to enable a person with disability to undertake their duties as an

employee. This might include installing ramps or purchasing accessible software.

Many of the features of the ADA, including its emphasis on reasonable

accommodation were replicated in other countries around the world in the 1990s with

similar disability discrimination acts introduced in a number of counties in the 1990s,

including in the English speaking world and Latin America.87

The ADA was heralded as a revolutionary change in disability policy and

there is evidence to suggest that American academics and policy makers made strong

efforts to encourage its adoption around the world. This call was taken up by many in

the disability movement in Europe. In 1991 Mike Oliver and Colin Barnes argued that

the American civil rights movement and the ADA provided a successful model for

change in Britain: ‘Politicians may not be certain that anti-discrimination legislation is

the way to proceed, but disabled people are.’88Academics also promoted the ADA as

an example to be followed in the area of disability policy making. Charles Syzmanski

offered a glowing account of the spread of the ADA worldwide, representing the

spread of disability rights law as a positive result of globalization. He argued that this

legal framework spread particularly fast due to the universality of the experience of

                                                                                                               86 During an interview with Professor Ron McCallum, he suggested that a large number of advocates for disability legislation in the USA were Vietnam War veterans: Interview with Professor Ron McCallum, member of the Committee on the Rights of Persons with Disabilities from Australia, Former labour lawyer and legal academic at the University of Sydney, interview conducted in Geneva, 7 April 2014, Transcript at Annex B2 87 Syzmanski, ‘The Globalisation of Disability Rights Law’: 18-35 88 M. Oliver and C. Barnes, ‘Discrimination, Disability and Welfare: From needs to rights’, in Equal rights for disabled people: the case for a new law, eds. I. Bynoe, M. Oliver and C. Barnes, Institute of Public Policy Research, 1991, http://disability-studies.leeds.ac.uk/files/library/bynoe-equal-rights-for-disabled-people.pdf

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disability and the effectiveness of the ADA and he sees the spread of the ADA model

as ‘the harbinger of the spread of other, effective legal ideas on a global level.’89

However, there is reason to doubt the claim for the ADA’s effectiveness. Jared Cantor

has argued that American academics strongly encouraged the exportation of the ADA

to Europe as the perfect model for dealing with disability, but that this was premature.

While academics were stressing its benefits, it success was being curtailed in the US

through narrow interpretation in the courts.90 There have also been a range of studies

that call into question the effectiveness of the ADA as a policy tool. In 1998 Daron

Acemoglu and Joshua Angrist published a study suggesting that the ADA had a

negative impact on employment of people with disabilities in the United States.91

Thomas DeLeire similarly claimed in 2000 that rates of employment of people with

disabilities decreased more significantly than other sections of the population.92 These

writers essentially argue that most cases brought forward under the ADA were for

wrongful termination, creating a disincentive for employers to hire people with

disabilities.

Despite the questions that were emerging about the efficacy of the ADA, the

EU also made a shift to anti-discrimination approaches to disability. A particular

turning point for the EU was the Treaty of Amsterdam signed in 1997, which placed a

greater general emphasis on human rights and anti-discrimination, not only for

disability policy, but for EU policy more generally. There is evidence that the EU

strongly encouraged this change in policy emphasis. An Intergovernmental

Conference was held in 1997 to negotiate the treaty, and prior to this conference the

EU organized for senior officials from EU member states to spend a week with US

federal counterparts to ‘normalize’ the anti-discrimination model.93 In the specific

case of disability policy, the ADA was used as a policy model for the European

Employment Equality Framework Directive, which was introduced in 2000.94 Like

its model the ADA, the European Union’s Equality Framework Directive also had

                                                                                                               89 Syzmanski, ‘The Globalisation of Disability Rights Law’: 23 90 J. Cantor, ‘Defining Disability: Exporting the ADA to Europe and the Social Model of Disability’, Connecticut Journal of International Law, 24 (2009): 299-434 91 D. Acemoglu and J. Angrist ‘Consequences of Employment Protection? The Case of the Americans with Disabilities Act’, NBER Working Paper No. 6670, Issued in July 1998 92 T. DeLeire, ‘The Wage and Employment Effects of the Americans with Disabilities Act’, The Journal of Human Resources XXXV: 4 (2000): 693-715 93 Quinn and Flynn, ‘Transatlantic borrowing’: 39 94 Syzmanski,‘The Globalisation of Disability Rights Law’: 28 and Waddington ‘Evolving Disability Policies’:163

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early problems due to its interpretation in the courts, 95 but nevertheless legal

approaches to disability have continued to gain significant currency within the

European Union. The 2010 Charter of the Fundamental Rights of the European

Union contained an article on the rights of persons with disabilities.96 In 2011,

disability moved from the European Union’s Employment Directorate General to its

Justice Directorate General, where it is dealt with as an issue of non-discrimination.97

As legal and non-discrimination approaches to disability spread across the

world and took roots in Europe, there was also increased pressure for a specific

United Nations Convention on disability. Negotiations began in 2002 following a

resolution put forward by Mexico. The UN Convention on the Rights of Persons with

Disabilities (CRPD) was the first human rights convention of the 21st century and

was the first UN convention for which the European Union was a key negotiating

party and signatory. It was drafted between 2002 and 2006, a relatively short span of

time by UN standards. It was negotiated by UN member states but also with a high

degree of involvement of civil society representatives within member state

delegations. The Convention did not create new human rights law, but clarified how

existing human rights law applies to people with disabilities. The CRPD has a strong

focus on anti-discrimination, but it covers the social, cultural, civil and political

dimensions of discrimination towards persons with disabilities with articles on

accessibility, justice, education, healthcare and work. The issues that have been the

most controversial and which have been discussed the most are those relating to the

legal capacity of persons with disabilities, their right to supported rather than

substituted decision making, and the right to live independently in the community.

Another key area of contention amongst states and civil society representatives was

whether segregated education and work environments should be tolerated.

The CRPD is an instrument to drive legal changes worldwide. It is legally

binding for states that are signatories. They are required ‘to adopt all legislative,

administrative and other measures for the implementation of the rights recognized in

the present convention’ and ‘to take all appropriate measures, including legislation, to

modify or abolish laws, regulations, customs and practices that constitute                                                                                                                95 Cantor, ‘Defining Disability’: 428 and Quinn and Flynn, ‘Transatlantic borrowing’: 40 96 European Union, Charter of Fundamental Rights of the European Union, 26 October 2012, 2012/C 326/02, accessed 3 April 2014, http://www.europarl.europa.eu/charter/pdf/text_en.pdf : 14 97 J. Rowell, ‘Une sociologie des catégories de l’action publique en Europe : L’instrumentation des politiques sociales européennes’, Mémoire d’Habilitation à diriger des Recherches, Université de Strasbourg, 26 mars 2012: 109

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discrimination against people with disabilities’.98 It also contains an optional protocol,

which enables individuals and groups from states that are signatories to lodge

complaints with the Committee for the Convention on Rights of Persons with

Disabilities, which its treaty monitoring body.

2.4 The social model and the human rights model

The growing emphasis on human rights and anti-discrimination law has often been

represented by disability scholars and activists as a logical progression from the

emergence of the disability activist movement and the rise of the social model of

disability in the 1970s. This is somewhat paradoxical, as radical disability movements

sought to subvert and contest the notion of disability itself, and legal approaches tend

to emphasise definitions of disability. Many of the activists who pushed for an anti-

discrimination approach modeled on the ADA also spoke of the social model of

disability, but it is necessary to recognize that the social model represents a broad set

of ideas about the structural disadvantage in our society, whereas an anti-

discrimination approach often focuses on specific legal avenues to address

discrimination and disadvantage.

Mike Oliver and Colin Barnes became strong proponents of the anti-

discrimination approach in Britain in the 1990s. In 1991 they made a call for anti-

discrimination legislation and they represented this move to an anti-discrimination

approach as the natural result of earlier questioning of the role of people with

disabilities in society.99 In 2002, as negotiations began for the UN Convention on the

Rights of Persons with Disabilities, Gerard Quinn and Theresia Degener, two

European disability law experts, published Human Rights and Disability: The Current

Use and Future Potential of United Nations Human Rights Instruments in the Context

of Disability. This publication commissioned by the Office of the High Commissioner

for Human Rights (OHCHR) in Geneva provided a strong argument for the use of

disability law and the development of a disability-specific United Nations

Convention. Quinn and Degener regard the transition from the social model to legal

approaches as a natural development. It is argued that ‘the end goal from the

                                                                                                               98 UN General Assembly, Convention on the Rights of Persons with Disabilities: Article 4 (b) and 4 (c) 99 Oliver and Barnes, ‘Discrimination, Disability and Welfare’

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perspective of the human rights model is to build societies that are genuinely

inclusive, societies that value diversity and respect the dignity and equality of all

human beings regardless of difference’. 100 Law is represented as the obvious

mechanism to achieve this goal: ‘Disability challenges society to live up to its values

and sets international law the task of engineering positive change’. 101 Degener

continues to maintain this view and has recently written that ‘The social model of

disability served as a stepping stone in struggles for civil rights reform and anti-

discrimination laws’, interpreting the transition to legal approaches as an

advancement from the social model. Quinn also published an article in 2012 with

Eilionóir Flynn in which they explicitly linked the social model and the anti-

discrimination model arguing ‘It is but a short step from the ‘social-construct’ theory

of disability to the ‘civil rights’ perspective’, that these both rely on equality and that

the ‘non-discrimination tool’ is ‘the logical weapon of choice’.102 In the 1990s and early 2000s the social model was subjected to greater

criticism and questioning in the field of disability studies. Tom Shakespeare has been

influential in challenging the social model as it emerged in Britain in the 1970s,

arguing that its strict distinction between impairment and disability ignores the bodily

experience of impairment and the impact of pain caused by impairment on the lives of

people with disabilities.103 The social model has also been criticized for not allowing

room for unique identity groups within the disability community. 104 The Deaf

community in particular identifies as a group with a unique culture and language,105

and this does not fit neatly within the simple paradigm of the traditional social model.

For Degener the human rights model is superior to the social model because it

provides a practical method to address the problems experienced by people with

disabilities, and it is also sensitive to the bodily experience of disability and to unique

cultures within the disability community.106 Her interpretation of the human rights

model is that it goes beyond the social model of disability and is a more sensitive tool

to re-engineer society. While the social model offers a tool for explaining the

                                                                                                               100 Quinn, Degener et al., Human Rights and Disability: 15 101 Quinn, Degener et al., Human Rights and Disability: 13 102 Quinn and Flynn, ‘Transatlantic borrowing’: 29 103 Shakepeare, Disability Rights and Wrongs: 8-16 104 Watson, ‘The Dialectics of Disability’: 101-117. 105 L. Kauppinen and M. Jokinen, ‘Including Deaf Culture and Linguistic Rights’ in Human Rights and Disability Advocacy, eds. M. Sabatello and M. Schulze (Philadelphia, University of Pennsylvania Press, 2014), 133-9 106 T. Degener, ‘Challenges and Compliance of the UN CRPD’ (unpublished manuscript, March 2013)

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structural barriers in our society, it is argued that the human rights model goes further

and is ‘a visionary law designed to transform society into a more just society.’107  

Regardless of the debate that exists around the social model, it is not

immediately obvious why the focus on anti-discrimination and legal approaches came

to the forefront. The questions that were raised about the role of disability in society

and the social construction of disability in the 1970s and 1980s could also have led in

a number of different directions. Legal approaches are not the only methods that can

reasonably be imagined to address the structural disadvantages faced by people with

disabilities and identified through the social model. Another model to address the

disadvantage of persons with disabilities plausibly is the social welfare model, which

has been historically important in Europe and provides assistance to people with

disabilities in the form of pensions, aids and equipment and personal assistance. The

provision of welfare to people with disabilities has been largely criticized as a charity

model that has had a negative effect on the lives of people with disabilities. Barnes

and Oliver claimed ‘Not only has state welfare failed to ensure the basic human rights

of disabled people, but it has also infringed and diminished some of these rights.’108

Quinn and Flynn also argue that the transition to a non-discrimination approach has

been a positive development as it offered a method to address structural disadvantage,

whereas the previous European welfare model only embedded dependency.109

However, this argument does not stand up to close analysis, as welfare

approaches can be designed and implemented in a variety of different ways. The

welfare model can also promote the rights of people with disabilities by providing an

entitlement to compensation for those who are unable to work and sharing the risk of

sickness and impairment across society as a whole. It could be suggested that legal

remedies might actually be less effective to address structural advantage than social

welfare assistance. Legal approaches tend to emphasize the individual complainant,

whereas social welfare intervenes more broadly to address disadvantage. The legal

and anti-discrimination discourse is now dominant at EU level, but social welfare

assistance still plays an incredibly important role in European Union member states,

despite the overall policy emphasis on human rights. Authors such as Barnes, Oliver,

Quinn, and Flynn reject the welfare model in favour of anti-discrimination law, yet if

                                                                                                               107 Degener, ‘Challenges and Compliance of the UN CRPD’: 2 108 Oliver and Barnes, ‘Discrimination, Disability and Welfare’ 109 Quinn and Flynn, ‘Transatlantic borrowing’: 30

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all welfare assistance were to be removed and replaced with legal approaches, it can

be imagined that the real situation for people with disabilities in terms of income and

quality of life would decline significantly.

There was relatively little resistance within Europe to the spread of anti-

discrimination approaches. Vic Finkelstein was one individual who was highly critical

of the legal direction in disability policy, associating it with free market liberalism:

…if all major political parties are now in favour of a free market to sort out problems in the health and social services rather than finding better ways for users to exercise democratic control over these services upon which they depend (…) all we can do is beg that our human ‘rights’ are recognized and policed.110

Quinn and Flynn have also drawn attention to some opposition within European

disability civil society towards these approaches and refer in particular to a Danish

disability group who suggested that anti-discrimination approaches were an ‘Anglo-

American conspiracy to strip away the positive accomplishments of the Danish

welfare model’.111 Yet there have been very few in the field of disability policy who

have questioned this change of emphasis. The question therefore emerges why the

human rights model became almost universally accepted.

2.5 Human rights at the UN – the effects of globalization

The shift to a human rights approach to disability can be seen in the context of the

growing global emphasis on human rights and anti-discrimination law for a wider

range of issues than disability. As a policy framework, human rights has grown in

popularity only since the latter half of the twentieth century.112 While a number of

authors have traced the values and ideals that we today associate with human rights

back to the enlightenment, it is only in recent years that the concept of ‘human rights’

has been frequently invoked in a political context. This general rise in rights-based

approaches can be interpreted in the context of globalization. Kenneth Cmiel argues

that human rights has grown in popularity as a policy tool as it is vague and can have

different meanings and interpretations across cultures. Human rights is:                                                                                                                110 V. Finkelstein, ‘The ‘Social Model of Disability’ and the Disability Movement’. March 2007, online http://disability-studies.leeds.ac.uk/files/library/finkelstein-The-Social-Model-of-Disability-and-the-Disability-Movement.pdf: 4 111 Quinn and Flynn, ‘Transatlantic borrowing’: 37 112 A. Iriye, P. Goedde and W. Hitchcock, The Human Rights Revolution: An International History , (OUP USA, 2012): 6

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…part of late-twentieth-century globalization, one of the lingua francas used to communicate across cultures around the globe…"disembedded" forms of communication, idioms lifted out of local context yet able to communicate in basic ways to those rooted in radically different cultures.113

Cmiel also argues that international civil society organisations have played a

particularly important role in this change though the development of global

information networks.114 Cmiel’s analysis can be applied more specifically to the

spread of disability rights. I will argue that human rights approaches are particularly

attractive to international organizations like the United Nations, which work to

develop common languages and policies across cultures and this can help explain why

they came to dominate in disability. Legal instruments based on anti-discrimination

are one of the major policy tools of human rights, and are easier to transport across

countries because law is relatively universal compared to welfare interventions, which

tend to be closely tied to a specific national context. It is also easier to agree to human

rights and anti-discrimination principles at an international level than to welfare

approaches which require a clear funding commitment from states. Finally I will

argue that ‘human rights’ provided a common communication tool enabling global

networks of disability rights activists to communicate amongst each other.

The negotiation of the UN CRPD provides an example of the challenges

associated with finding an international common ground in disability. It demonstrates

the dominance of anti-discrimination and legal approaches in the context of extensive

negotiation and compromise between national interests, the interests of civil society

and different cultures. While the CRPD brings together a diverse range of issues,

‘non-discrimination’ is a predominant focus and is its second guiding principle after

the more general, ‘Respect for inherent dignity, individual autonomy including the

freedom to make one's own choices, and independence of persons’.115

A United Nations convention above all represents a compromise between

different nation states that are seeking to pursue their own interests. In the case of the

CRPD, different nations sought to place their own model for dealing with disability

on the agenda. The United States did not play an active role in negotiations. At this

point in time while under the Presidency of George W. Bush, the USA was generally

opposed to participation in international human rights agreements. However, the anti-                                                                                                                113 Cmiel, ‘The Emergence of Human Rights Politics’: 1248-9 114 L. Hunt, Inventing Human Rights: A History, (W. W. Norton & Company, 2008): 207-8 115 UN General Assembly, Convention on the Rights of Persons with Disabilities: Article 3 - General Principles

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discrimination and civil rights model that had emerged in the US was promoted

largely by European nations and the European Union, which represented a significant

block of states. Southern and Central American member states of the United Nations

also played a strong role in negotiations with the original proposal for a disability-

specific convention brought forward by Mexico. South American States approached

disability in the negotiations from the perspective of ‘social development’.116 During

the course of research for this thesis an interview was conducted with a high-level

diplomat from Ecuador who was involved in the negotiations of the CRPD. He

outlined the importance of ‘development’ for the Latin group of nations, but

suggested that this was highly controversial with Europe and the United States, which

in his opinion wrongly perceived this emphasis on development as a means for poorer

nations to seek funding assistance. There is ultimately an article in the CRPD that

deals with ‘International Cooperation’, which includes disability-inclusive

development. However, the more dominant emphasis on anti-discrimination is

probably a result of the adaptability of this kind of legal approach, and that it does not

tie states to specific funding commitments.

The diplomat who was interviewed stressed the complexity of the

negotiations, the challenges associated with reaching consensus amongst such a

diverse group of stakeholders and underlined the communication barriers experienced

during negotiations:

I come from a culture that is basically codified in law. I’m a Catholic, I’m a lawyer, I deduce. Anglo-Saxons, Australians induce, so in the context of that, in the negotiations, it’s extremely interesting to see and important to know where this comes from, or how this guides his process of reasoning, because you can agree verbally, but not necessarily in written form.117

He suggests that rather than simply working with different legal frameworks, it was

difficult to reach agreement in an international negotiation due to the different

languages and culturally based styles of reasoning and arguing. This was the case

even within the legal framework of human rights, which provides some form of

standardized international language and process.

When questioned about the expertise that was utilised in the drafting of the

CRPD, the interviewee described consultation with experts from a broad range of

                                                                                                               116 Quinn and Flynn, ‘Transatlantic borrowing’: 27 117 Interview with a senior UN diplomat from Ecuador who was heavily involved in the working group that negotiated the Convention on the Rights of Persons with Disabilities, conducted in Geneva, 9 December 2013, Transcript at Annex B1

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disciplines resulting in a range of different recommendations: ‘what we got was a

huge range of options.’118 However, he also specifically referred to a particular group

‘the friends of the chair’ who were most helpful in guiding the drafting process:

They were basically lawyers, because you needed an expertise in disability law and they were very good lawyers who had been doing this, but from a theoretical point of view. Now, that theoretical point of view, as an anecdote, stands from the point of view of saying if a person has a disability, can he take the person who doesn’t give him employment or who discriminates against him to court and what will he get if he gets a positive decision.119

In the presence of such a diverse set of opinions and options, the drafters turned to

legal approaches and specifically to anti-discrimination approaches to build a

common consensus. It can also be noted that the United Nations is generally a legal

culture, with a large number of employees coming from an academic background of

law, or more specifically human rights law. This is the case for many diplomats and

members of country delegations, including the subject I interviewed, making legal

approaches more attractive.

International networks of disability civil society organisations also played a

crucial role lobbying for disability to be considered as a human rights issue in the lead

up to the CRPD negotiations and were heavily involved during the formal and

informal negotiations of the convention. The diplomat that I interviewed drew

particular attention to the involvement of civil society, and their capacity to come

together as a unified group:

During and after the convention you had a disability society that joined together. I used to meet them every lunch and would have sandwiches with all civil society, with all major NGOs.120

He interpreted his own role in the negotiations and the development of the UN

convention as a facilitator, bringing groups of people together and leading them

towards an agreement within the framework of the UN system and its processes. He

saw himself in particular as a facilitator for the participation of civil society, enabling

them to explain their views to diplomats within the UN system.

Maya Sabatello and Marianne Schulze have recently published a compendium

of personal accounts by civil society representatives that participated in the drafting of

the UN CRPD, in which they recount their experiences in the negotiations, the issues

that were of particular importance to them, and the compromises that were made.                                                                                                                118 Interview with a senior UN diplomat from Ecuador, Transcript at Annex B1 119 Interview with a senior UN diplomat from Ecuador, Transcript at Annex B1 120 Interview with a senior UN diplomat from Ecuador, Transcript at Annex B1

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Sabatello describes the role of civil society in negotiating the CRPD as an example of

‘the new diplomacy’, suggesting that the increased involvement of civil society in the

negotiations of the CRPD compared to previous negotiations allowed the CRPD to be

negotiated more quickly and also resulted in its ‘undisputed’ success.121 She suggests

that disability civil society’s impact on the CRPD negotiations represents a new

development at the level of the UN and has potential implications for other social

movements.122 The personal accounts of the CRPD negotiation collected by Sabatello

and Schulze are diverse, as the individuals who wrote them were from different

cultures and had different experiences of disability, but they all stress the importance

of uniting together to achieve common outcomes despite their differences. Lex

Grandia from the World Deafblind Federation writes: ‘Imagine: together we made

ourselves heard.’123

The use of modern communication technologies including the internet was an

important element of negotiations for civil society participants, allowing them to

connect with one another and also with their networks across the globe and mobilize

support during the process of negotiations. The role of the internet was identified as a

critical factor by the senior diplomat interviewed for this study:

…internet, being used intelligently by civil society, you were communicating to your people in the capitals of countries and these people in the countries would be able to talk to the members of parliament or lobby the persons in parliament to lobby for change to the positions of their delegations. This is something that was unheard of.124

The importance of the internet in the CRPD negotiations supports Cmiel’s argument

that global networks of civil society have enabled the spread of human rights

approaches.

In order to effectively influence national delegations, civil society was also

required to gain some familiarity in legal terminology and human rights law. Lex

Grandia commented: ‘The CRPD is a legal document. I am not a lawyer so I had to

learn this. We had very good lawyers in the IDC’.125 Similarly, Pamela Molina

Toledo, who was representing a small national DPO based in Chile noted that:

                                                                                                               121 M. Sabatello, ‘The New Diplomacy’ in Human Rights and Disability Advocacy, eds. M. Sabatello and M. Schulze (Philadelphia, University of Pennsylvania Press, 2014): 240 122 Sabatello, ‘The New Diplomacy’: 254-8 123 L. Grandia, ‘Imagine: To Be a Part of This’ in in Human Rights and Disability Advocacy, eds. M. Sabatello and M. Schulze (Philadelphia, University of Pennsylvania Press, 2014): 147 124 Interview with a senior UN diplomat from Ecuador, Transcript at Annex B1 125 Grandia, ‘Imagine: To Be a Part of This’: 153

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The experience and diligence shown by all leaders with disabilities who were well versed in the issues of human rights and in the processes of the UN demonstrated both the justness of our cause and legitimated our presence at the negotiating table.126

Using the standard legal language of the UN provided a more effective means for civil

society representatives to influence the negotiations. Legal approaches were also

likely to provide a more effective international communication tool to reach networks

across the world with the assistance new technology.

It was not only during the negotiations of the CRPD that human rights and

anti-discrimination approaches came to dominate disability policy, but the CRPD

negotiations represent the culmination of this shift, and provide a specific example of

the way in which human rights approaches offer a practical international

communication framework, particularly across global civil society networks.

2.6 The EU – human rights and legitimacy

Europe was initially slower to adopt the anti-discrimination approach than many parts

of the world, but as has been seen, the EU embraced this approach quickly in the late

1990s and early 2000 in its policy statements and documents. This sudden shift

towards human rights and anti-discrimination is worthy of further analysis.

The change in the EU’s position can be demonstrated through its involvement

in the negotiation of the CRPD. While the EU and European nations publically

supported the proposal for a UN convention, observers identified the EU as

obstructive in the early process of negotiations. In a recorded interview with a senior

UN diplomat it was revealed: ‘the EU stood in a position of saying we are still

analyzing if we should have a convention. And then they began to block.’127 The USA

was also identified as a state that blocked the convention initially, however, ‘The

Europeans changed faster than the Americans because of Brussels.’128 The EU’s early

caution during the negotiations was also mentioned in informal conversations held

with a number of individuals involved in the negotiations of the Convention, who

suggested that the EU was worried about the reporting burden associated with a new

treaty, and wanted the CRPD to be as narrow a document as possible. By the end of                                                                                                                126 P. Molina Toledo, ‘The South Also Exists’ in Human Rights and Disability Advocacy, eds. M. Sabatello and M. Schulze (Philadelphia, University of Pennsylvania Press, 2014): 177 127 Interview with a senior UN diplomat from Ecuador, Transcript at Annex B1 128 Interview with a senior UN diplomat from Ecuador, Transcript at Annex B1

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the negotiations, however, the EU was identified as a strong and enthusiastic

supporter of the CRPD.

From its origins, the EU has expanded from an organization focused solely on

trade to become involved in a wider range of policy domains such as social and

environmental policy. One reason for the changing position of the EU was the

influence of civil society organizations. The EU had established and provided funding

for the EDF in the 1990s as part of a push to develop a European wide social policy

network. The EDF went on to lobby strongly for rights based approaches. 129 The EDF

and many of its member organizations were represented in the CRPD negotiations and

put considerable pressure on the EU and on member state governments. Through its

support for a European civil society network the European Union has created

opportunities for disability activists to make their voices heard and influence policy at

the level of the European Union and at a global level.130

The European Union’s rapid shift to a focus on human rights law also

provided practical advantages for the EU in its aims to build greater legitimacy as a

supranational organization working across different legal and political cultures.

Kelemen and Vanhala argue that the speed with which the European Union has

transitioned to a rights based model of disability is due to due to its supranational

structures. The rights-based model provides greater possibilities for the EU to become

involved an area that is usually the specific concern of national governments and

therefore reinforces its legitimacy.131 Similarly, Anne Waldschmidt has suggested that

the European Union’s emphasis on human rights and anti-discrimination law makes

sense as it enables more ‘top-down processes’ which are the domain of the EU and

which drive coordination between nation states.132

In addition, I would suggest that rather than simply being a matter of law, the

EU’s growing emphasis on human rights is an issue of identity. As European

economic and political integration has increased, it has been important to identify

shared values and common interests that bind diverse European nations together and

‘human rights’ have been increasingly emphasised as part of the shared cultural

heritage of Europe. This was clear already in the European Union’s 1996                                                                                                                129 Mabbett, ‘The Development of Rights-based Social Policy’: 104 130 M. Priestly, ‘In search of European disability policy: Between national and global’, ALTER: revue européene de recherché sur le handicap, Vol 1 (2007): 72 131 R. D. Kelemen and L. Vanhala, ‘The Shift to the Rights Model of Disability in the EU and Canada.’ Regional & Federal Studies 20, 1 (2010): 1-18 132 Waldschmidt, ‘Disability policy of the European Union: The supranational level’: 14

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communication on a European disability strategy, which states ‘Respect for, and

promotion of human rights and diversity, have long been part of our shared European

values.’133 It was also evident as the EU established its framework for equal treatment

in employment in 2000:

The Union is founded on the principles of liberty, democracy, respect for human rights and fundamental freedoms, as well as the rule of law. Hence the EU must take all measures necessary to combat discrimination of all kinds, notably as regards employment and the labour market.134

Finally, the UN CRPD was an important milestone for the EU as it was the first UN

treaty to which the EU was a negotiating partner alongside member states and also a

signatory. European academics and policy makers continue to stress the importance of

this milestone for the EU and the important role the EU played influencing the shape

and content of the convention. In 2009 Gerard Quinn and Oddy Arnadottir also made

a claim that ‘European ideas played a predominant role in shaping key parts of the

Convention’,135 once again emphasizing human rights as a specifically European

concept. Human rights has come to play a powerful symbolic role in the way the

European Union defines itself, facilitating the spread of human rights approaches in

Europe.

2.7 The decline of rehabilitation  From the 1990s the United Nations and the European Union no longer emphasized

rehabilitation in their policy documents and workforce integration also became a less

dominant policy focus as discourse expanded to include a range of other dimensions

of disability. Rehabilitation has not disappeared from disability policy, but it is now

largely the domain of the WHO, which unsurprisingly retains a stronger medical

focus than other international organizations.

While the WHO was the first international organization to reflect the social

model in the 1980 ICIDH the social model has continued to be somewhat problematic

                                                                                                               133 European Commission, A new European Community disability strategy: 6 134  European Commission, Equal treatment in employment and occupation. Directive 2000/78/EC of 27 November 2000, establishing a general framework for equal treatment in employment and occupation. Accessed 31 May 2014. http://europa.eu/legislation_summaries/employment_and_social_policy/disability_and_old_age/c10823_en.htm 135 G. Quinn and O. Arnadottir, ‘Introduction’, in The UN Convention on the Rights of Persons with Disabilities: European and Scandinavian Perspectives, eds. O.M. Arnadottir and G. Quinn (Leiden, Brill Nihoff, 2009): xvi

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for an organization that is primarily focused on medical solutions. In 2001 the WHO

updated the ICIDH and agreed a new International Classification of Functioning,

Disability and Health (ICF). This revised version also defines disability for the

purpose of governments and policy makers, but moves beyond the rigid boundaries of

the previous document, which separated impairment, disability and handicap, and

which had proved challenging as a policy making tool for those in the field of health.

The 2001 framework adopts a more subtle view of disability as ‘an interaction or

complex relationship between the health condition and contextual factors’. It attempts

to bring together the medical and the social model in a ‘biopsychosocial’ model.136  

One difficult issue for the WHO is prevention of disability. Prevention of

disability is conspicuously absent from the CRPD, but the WHO acknowledges that

‘attention to environmental factors – including nutrition, preventable diseases, safe

water and sanitation, safety on roads and in workplaces – can greatly reduce the

incidence of health conditions leading to disability’.137 From the perspective of the

social model, prevention of impairments is a responsibility of the health system,

whereas prevention of disability would take the form of awareness raising or removal

of barriers. The language of prevention is potentially stigmatizing and discriminatory

to those living with a disability, but the WHO’s ongoing emphasis on prevention

demonstrated by its statement: ‘Preventing disability should be regarded as a

multidimensional strategy that includes prevention of disabling barriers as well as

prevention and treatment of underlying health conditions’138 reveals the ongoing

challenges associated with separating social and medical ideas about disability.

Since the CRPD came into force, the WHO has also framed disability in the

language of human rights. In 2011 the WHO released a World Report on Disability in

collaboration with the World Bank. This report looks at rehabilitation but it also

contains a significant focus on discrimination within the health system and how the

health system can become more inclusive. The WHO represents its work as

contributing to the broader human rights agenda for disability and the implementation

of the CRPD. This suggests that approaches to disability at the level of international

                                                                                                               136 World Health Organisation, ICF: International classification of functioning, disability and health (Geneva : World Health Organization, 2001), http://www.disabilitaincifre.it/documenti/ICF_18.pdf: 20 137 World Health Organization and the World Bank, World Report on Disability (Geneva, WHO, 2011), http://whqlibdoc.who.int/hq/2011/WHO_NMH_VIP_11.01_eng.pdf?ua=1: 8 138 World Health Organization and the World Bank, World Report on Disability: 8

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institutions have broadened and that policies of rehabilitation have been subsumed

within the larger human rights agenda.

This chapter has looked at the factors that enabled a shift in discourse on

disability from a medical model based on rehabilitation to a human rights and anti-

discrimination framework within the United Nations and the European Union. The

disability activist movement was critical in drawing attention to role of people with

disability in society, however, it was globalization and international networks of civil

society that enabled the human rights approach to enter into institutional discourse at

the United Nations, and it was the European Union’s push for greater legitimacy that

contributed to its rapid shift to human rights and anti-discrimination policies. These

policies are now strongly embedded at the UN and the EU, but questions arise as to

the efficacy of this rights based approach and whether it is merely a symbolic gesture.

The next chapter will look at how human rights law has been operationalized in the

European Union and the United Nations and its real and symbolic meanings for policy

makers and people with disabilities.

   

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3. Disability Rights in the UN and the EU today

We have seen more focus on certain areas especially within the European Union based on the concept of the UNCRPD, but basically today I would say that you have not seen the convention become that vehicle for change that is needed, but it has definitely been part of that to put disability on the agenda…139 (Stig Langvad, CRPD Committee member, Interview 12 April 2014)

This chapter will take a closer look at disability policy at the UN and the EU today. I

will firstly consider the symbolic significance of human rights policy for people with

disabilities and policy makers before assessing the specific effects of the human rights

approach within the United Nations and the European Union. Chapter 2 has

demonstrated how human rights approaches to disability entered into institutional

discourse in these organizations, but to fully understand the transition to human rights

approaches it is also necessary to consider how these approaches have been

implemented and their impact on the current environment.

3.1 Disability rights and policy symbolism

The recognition of disability as a human rights issue has a number of symbolic

meanings, regardless of its effect on the material conditions of persons with

disabilities. Murray Edelman has argued that there is an important symbolic

dimension to politics and rather than simply providing people with concrete benefits,

politics also offers a public spectacle and provides reassurance to the public and to

specific interest groups. Abstract ideas such as democracy and justice become

communication tools to convey messages to the public. Human rights is one such

concept that has come to hold strong symbolic connotations. Edelman also makes the

more controversial assertion that the more symbolic attention is paid to constituencies

the less material benefits they are provided.140 In this chapter I will therefore consider

the symbolic dimensions of human rights approaches and how they have been

implemented to assess whether Edelman’s theory can be applied in this case.

                                                                                                               139 Interview with Stig Langvad, Member of the Committee on the Convention on the Rights of Persons with Disabilities from Denmark, Chair of Disabled Peoples’ Organisations Denmark and Executive Member of the European Disability Forum, conducted by skype, 12 April 2014, transcript at Annex B4 140 M. Edelman, The Symbolic Uses of Politics (Chicago, University of Illinois Press, 1985): 114-129

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People with disabilities and those working in the field of disability policy see

the UN CRPD as a recognition of their struggles and a validation of their needs and

concerns. Participants in the CRPD negotiations have drawn attention to the

importance of communicating their views in an international setting and representing

other people with disabilities from around the world. Many see this as part of an

important push to raise awareness, which goes a long way in changing perceptions,

and therefore behavior. For example, Liisa Kauppinen and Markku Jokinen from the

World Federation of the Deaf stressed that ‘importantly sign language and deaf

culture have received recognition’.141 Heidi Forrest and Phillip French from People

with Disabilities Australia note:

…the CRPD is our own collective composition: a synthesis of the diverse experiences and aspirations of persons with disabilities around the world; a fabric in which our past lives and future hopes are interwoven with those of others.142

Others perceive the negotiations as a fight for recognition by a group that has been

ignored and invisible in the past. Pamela Molina Toledo from a small Chilean NGO

writes:

I was ready to fight for those whose voice was inaudible, for those who had never had the opportunity or means to speak in the dominating language, and for those who had fallen into omission and oblivion.143

The ability to speak and be listened to in the international setting of the UN was

clearly a powerful experience for persons with disabilities involved in the CRPD

negotiations.

Among the many issues that were contested during the negotiations of the

convention, one of the most debated and most important for people with disabilities

was the issue of legal capacity, which is covered by CRPD Article 12: Equal

recognition under the law. Article 12 gives people with disability full citizenship

rights through legal majority. It sets out that ‘States Parties shall recognize that

persons with disabilities enjoy legal capacity on an equal basis with others in all

aspects of life’ and that ‘States Parties shall take appropriate measures to provide

access by persons with disabilities to the support they may require in exercising their

                                                                                                               141 L. Kauppinen and M. Jokinen, ‘Including Deaf Culture and Linguistic Rights’ in Human Rights and Disability Advocacy, eds. M. Sabatello and M. Schulze (Philadelphia, University of Pennsylvania Press, 2014): 144 142 H. Forrest and P. French, ‘Voices Down Under’ in Human Rights and Disability Advocacy, eds. M. Sabatello and M. Schulze (Philadelphia, University of Pennsylvania Press, 2014): 208 143 Molina Toledo, ‘The South Also Exists’: 171

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legal capacity.’144 This is broadly understood by disability advocates as giving people

with disability access to supported decision-making and forbidding substituted

decision-making arrangements such as guardianship. Article 12 also requires that

measures to support decision-making are subject to oversight and safeguards, and it

covers the right to ‘inherit property, to control their own financial affairs and to have

equal access to bank loans, mortgages and other forms of financial credit.’ This

article has a huge symbolic significance to people with disabilities based on their past

treatment. It has been described by people with disabilities as ‘a cornerstone of the

CRPD’,145 and ‘the most crucial article of the whole CRPD’.146 It is regarded as

‘central to the entire treaty in shifting the disability paradigm toward a social

model.’147 The disability law expert Gerard Quinn has said of article 12: ‘It provides

the legal shell through which to advance personhood in the lifeworld.’148 Beyond its

symbolic importance, there are issues associated with the interpretation and

implementation of article 12, and this will be discussed further on in this chapter.

The historical treatment of people with disabilities is often invoked by

disability activists to stress the changes that have occurred and to contribute to a

narrative of positive progress. As has been seen in chapter 3, many people working in

the movement represent the human rights model as a natural progression from the

emergence of a disability activist movement and provide a narrative that traces the

history of people with disabilities from the abuses of the past to their eventual

recognition through a human rights framework. A theme that appears regularly is the

past ‘invisibility’ of persons with disabilities and their transition to ‘visibility’ through

the human rights model of disability. On the sidelines of the CRPD committee

meeting in April 2014, I spoke with a human rights lawyer who is a person with

disability, and who has been involved in policy making at the European and UN level.

She talked about the four phases of disability policy; describing people with disability

as invisible citizens from 1945 to the 1970s, as subjects of rehabilitation from the

1970s to the 1980s, as objects of human rights from the 1980s to 2000 and finally as

                                                                                                               144 UN General Assembly, Convention on the Rights of Persons with Disabilities: Article 12 145 A. MacQuarrie and C. Laurin-Bowie ‘Our lives our voices’ in Human Rights and Disability Advocacy, eds. M. Sabatello and M. Schulze (Philadelphia, University of Pennsylvania Press, 2014): 33 146 Grandia, ‘Imagine: To Be a Part of This’: 153 147 T. Melish, ‘An Eye Toward Effective Enforcement’ Human Rights and Disability Advocacy, eds. M. Sabatello and M. Schulze (Philadelphia, University of Pennsylvania Press, 2014): 87 148 G. Quinn, ‘Personhood & Legal Capacity Perspectives on the Paradigm Shift of Article 12 CRPD’, HPOD Conference, Harvard Law School, 20 February, 2010, http://www.nuigalway.ie/cdlp/staff/gerard_quinn.html: 10

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subjects of human rights from the commencement of the negotiations of the CRPD.149

This narrative of demonstrates the symbolic dimensions of disability policy. The shift

from ‘objects’ to ‘subjects’ recognizes the importance of agency and involvement for

people with disabilities. The emphasis on ‘visibility’ is also particularly interesting.

The social model essentially suggested that disability is contextual and created by

society, however, an emphasis on visibility and recognition means people with

disabilities seek to be identified as disabled. This is consistent with the increasing

emphasis on disability sub-cultures and identities, and with the greater emphasis on

the individual under the human rights approach. The social model has always been

problematic from a policy implementation perspective, but the human rights and legal

model, which recognizes people with disabilities as individuals with specific rights, is

less challenging.

Human rights approaches are symbolically validating to civil society, but I

would also argue that they satisfy a crucial need for governments and international

organizations. Regardless of the actual progress that has been achieved, signing a

human rights agreement or a treaty signals the intentions of governments to improve

the situation of particular groups, such as persons with disabilities. For example, on

ratifying the CRPD, the European Union announced:

Following formal ratification, it is the first time in history the EU has become a party to an international human rights treaty – the United Nation's (UN) Convention on the Rights of People with Disabilities (…) It reflects the EU's broader commitment to building a barrier-free Europe for the estimated 80 million people with disabilities in the EU.150

Here the CRPD is used as evidence of commitment and willingness to change on the

part of the EU, even before concrete measures have been taken to implement this

change. In many senses, the convention is depicted as an end in itself. Don McKay,

who chaired the Committee that negotiated the Convention in the latter years of

negotiations writes:

The adoption of the Convention on the Rights of Persons with Disabilities by the United Nations General Assembly on 13 December 2006 marked the end of a long journey by civil society.151

                                                                                                               149 This interviewee is a human rights lawyer and person with disability from Germany who is also a member of the CRPD committee. She declined for the interview to be recorded. 150 European Commission, ‘EU ratifies UN Convention on disability rights,’ IP/11/4, 5 January 2011, accessed 19 April, http://europa.eu/rapid/press-release_IP-11-4_en.htm?locale=FR 151 Don McKay, ‘Forward’ in Human Rights and Disability Advocacy, eds. M. Sabatello and M. Schulze (Philadelphia, University of Pennsylvania Press, 2014): xi

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This statement signals the symbolic value of the Convention’s existence but fails to

recognize the reality of the implementation process.

Like people with disabilities themselves, governments and international

organizations also offer a positive narrative of progress over time. Historical disability

policies are described in order to contextualize current arrangements, and to stress the

progress that has been made and the logical progression towards a human rights

approach to disability. It is perhaps unsurprising that policy makers describe the

situation of persons with disabilities in the past in order to stress the superiority of

their current policies. For example in its background study to its European Disability

Strategy 2010-2020, the European Commission referred to its 1980s policies to stress

its revised emphasis on equal opportunities and non-discrimination.152 An interesting

example of how the human rights approach has been contextualized historically

comes from France, where the government’s public website dealing with disability

policy includes a lengthy chronology which charts the policies and laws relating to

people with disabilities from the Middles Ages to the twenty-first century. This

timeline covers developments in social welfare, compensation, and the emergence of

a non-discrimination approach.153 Once again it offers a story of progress and the

treatment of people with disabilities in the distant middle ages seems to be intended to

offer a contrast to today’s superior policies.

3.2 ‘Nothing about us without us’

The catch-cry of the disability movement has been ‘Nothing about us without us’. An

indisputable result of the UN CRPD and the rights based approach to disability is that

people with disabilities themselves are more extensively consulted as policy is

developed and implemented. The requirement for consultation at national level is

embedded within the CRPD, which sets out that ‘States Parties shall closely consult

with and actively involve persons with disabilities’. 154 This legally mandated

requirement provides a further symbolic and validating role for persons with

                                                                                                               152 European Commission, ‘Commission Staff Working Document accompanying the European Disability Strategy 2010-2020’, SEC(2010) 1323 final, accessed April 2014, http://eur-lex.europa.eu/LexUriServ/LexUriServ.do?uri=SEC:2010:1323:FIN:en:PDF, 153 ‘La politique du handicap – chronologie’, Vie Publique, accessed 25 April 2014: http://www.vie-publique.fr/politiques-publiques/politique-handicap/chronologie/ 154 UN General Assembly, Convention on the Rights of Persons with Disabilities: Article 4, paragraph 3

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disabilities in policy development but it also gives people with disabilities a measure

of real influence because governments and international organizations are obliged to

publicly consult people with disabilities as they develop any new strategy and reflect

the results in their policy documents.

However, this consultation process does reveal fragmentation within the

disability community and conflicts for influence amongst different groups. A senior

diplomat involved in the negotiation of the CRPD suggested that the unity that was

achieved during the negotiations has since broken down: ‘I think that the unified

language that the disability activists came out of the negotiations with, it very soon

dissolved. All the quarrels they had about funding etc.’ 155 There also remain

inequalities in the treatment of people with different types of impairment. The issue of

how to improve the situation of persons with physical and sensory disabilities remains

much simpler than effecting real change for people with intellectual disability or

mental health conditions. While there is wide consultation of persons with disabilities,

disability experts are predominantly people with physical disabilities. People with

intellectual disabilities only have a voice through representative organizations, which

are often founded by their families and carers.

The issue of what does and does not constitute a disability causes some

tension within the disability community and people with particular impairments might

be granted greater legitimacy as advocates than others. In an interview, Diane

Mulligan who is a member of the CRPD committee described her long history as a

mental health service user and her identification as a person with disability on that

basis. However, she claimed that her disability status was not recognized by the

disability advocacy movement because it was not clearly visible. When she suffered a

motorcycle accident and became an amputee she was able to use her more visible

physical impairment to gain greater legitimacy:

I returned to the UK and realized that my physical impairment was a really great way to open the door on disability advocacy, to get mental health higher up on the agenda because I was seen as one of the club, because before I wasn’t accepted at all as a person with disability working in disability advocacy.156

                                                                                                               155 Interview with a senior UN diplomat from Ecuador, Transcript at Annex B1 156 Interview with Diane Mulligan, member of the UN Committee on the Convention of the Rights of Persons with Disabilities from Great Britain, Working for CBM International in Disability and International Development, interview conducted in Geneva, 8 April 2014, transcript at Annex B3

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This anecdote reveals a modern disability advocacy sector that is certainly not entirely

guided by the social model of disability, and in which impairment at a personal and

individual level is an important factor.

3.3 Disability rights at the UN – after the CRPD

It has been seen that human rights approaches have a significant symbolic value, but a

closer examination will now be undertaken of the actual changes that have occurred

since the ratification of the UN Convention of the Rights of People with Disabilities.

The CRPD is largely considered to have been an immense success within the

disability rights community due to the speed of negotiations and the number of states

that have ratified it. Theresia Degener has written that:

…while the CRPD is a latecomer compared to its sister treaties, it has been a success from the start of its negotiations in 2002: Its negotiation history among UN human rights treaties is the fastest; its ratification record is splendid.157

The high rate of ratification of the CRPD was mentioned in particular by several

interview participants.158 The progress of states that have signed and ratified the

CRPD is monitored by the Committee on the Convention of the Rights of People with

Disabilities, which meets twice a year in Geneva. This Committee is made up of

eighteen members at any one time. Candidates are selected so as to ensure ‘equitable

geographical distribution, representation of the different forms of civilization and of

the principal legal systems, balanced gender representation and participation of

experts with disabilities’. 159  While it is not a strict requirement for committee

members to be persons with disabilities themselves, seventeen of the eighteen current

members are persons with disabilities. Candidates are nominated by their state and

elected for a term of four years with reelection possible only once. Elections take

place at annual conferences in New York, bringing together states that are parties to

the Convention.160 States who have ratified the Convention are required to submit

                                                                                                               157 T. Degener, ‘Challenges and Compliance of the UN CRPD’:1 158 Interview with Professor Ron McCallum, member of the Committee on the Rights of Persons with Disabilities from Australia, Former labour lawyer and legal academic at the University of Sydney, interview conducted in Geneva, 7 April 2014, Transcript at Annex B2 and Interview with a senior UN diplomat from Ecuador, Transcript at Annex B1 159 UN General Assembly, Convention on the Rights of Persons with Disabilities: Article 34 160 UN Committee on the Rights of Persons with Disabilities, ‘Rules of procedure’, CRPD/C/4/2/Rev.1, 16 December 2013, accessed May 2014 http://tbinternet.ohchr.org/_layouts/treatybodyexternal/TBSearch.aspx?Lang=en&TreatyID=4&DocTypeID=65

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reports on implementation to the Committee within two years of accepting the

Convention, and then every four years. Shadow reports are submitted by DPOs in the

concerned country. The role of the Committee is to examine these reports and make

recommendations to states. The Committee is also responsible for examining

complaints submitted by individuals in states that have signed the Optional

Protocol.161

The CRPD continues to reinforce the dominance of legal approaches to

disability. Ratification has driven many states to introduce new disability laws and

revise existing laws. The current CRPD Committee is not entirely composed of legal

experts, but six of the eighteen committee members have studied law and practiced as

lawyers.162 Increasingly, DPOs are also turning to legal approaches. Professor Ron

McCallum, a member and former chair of the CRPD explained: ‘You see a lot of

Disabled Persons Organizations going into law (…) We’ll see more and more of that

like in the United States and the same with the European Court.’163 Many DPOs in

developing countries have little capacity in law and require support in this area. The

International Disability Alliance (IDA) is an umbrella body that represents DPOs

around the world and supports them in their engagement with the CRPD committee.

The employees of this organization are predominantly lawyers, and they explain the

workings of the UN to NGOs and discuss representational strategies. IDA itself is

more and more looking towards strategic litigation as a pathway to achieve policy

outcomes.164 The capacity to pursue legal action is likely to vary across states

depending on their national legal systems, and in some areas there are regional

mechanisms where legal action can be taken. In Europe, the European Court of

Human Rights (ECHR) provides an additional forum where legal action can be

                                                                                                               161 ‘Committee on the Rights of Persons with Disabilities’, UN Office of the High Commissioner for Human Rights, accessed 21 May 2014, http://www.ohchr.org/en/hrbodies/crpd/pages/crpdindex.aspx 162 There are also a number of members with backgrounds in international development and disability advocacy in the civil society sector, with one medical professional and one social worker represented on the committee. 163 Interview with Professor Ron McCallum, Transcript at Annex B2 164 During the 11th session of the CRPD Committee I observed IDA bringing together a group of people with disabilities representing DPOs from Mexico and teaching them how the address the CRPD Committee in a common legal language. A member of IDA also told me that a major priority for the organization was increasing strategic litigation.

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pursued and IDA and the European Disability Forum have recently been involved in

an increasing number of cases at the ECHR.165

The existence of the CRPD and the CRPD committee also provides

opportunities for leverage and influence for people with disabilities and DPOs. As the

CRPD has been signed by a significant number of governments worldwide, disability

advocates can refer to it to remind governments of their commitments. Diane

Mulligan, who works for a non-governmental organization focusing on international

development described way in which her orgnaisation uses the CRPD as an advocacy

tool:

The Convention is an excellent framework in which to place a lot of our policies. So when I am writing my main policy stuff which is for influence at the UN level I am able to speak their language…166

Mulligan reveals how the convention is a useful tool for civil society, but also how the

CRPD itself shapes the language and approaches of disability advocates. It helps

determine how they represent themselves at an international level and their policy

priorities.

Unfortunately, there are a number of limitations to the effectiveness of the

CRPD. The CRPD committee has quickly become overburdened with work based on

the large number of states signing and ratifying the CRPD, and its capacity to monitor

implementation by member states is somewhat limited as it is dealing with a large

backlog of reports from states and NGOs.167 The issues that are being experienced by

the CRPD Committee are symptomatic of broader problems for all human rights

treaty bodies. Staff of the United Nations Office of the High Commissioner of Human

Rights, which provides secretariat for the human rights treaty bodies, including the

CRPD Committee, frequently refer to the ‘Treaty Body Crisis’ to describe the large

burden of work for these bodies, and their limited capacity to achieve the goals for

which they were established.168 This crisis was even acknowledged in a 2012 Report

by the High Commissioner for Human Rights on Strengthening the United Nations

                                                                                                               165 Many of the news stories that appear on EDF’s website concern cases at the European Court of Human Rights: ‘News’, European Disability Forum, accessed 15 May 2014, http://www.edf-feph.org/Page_Generale.asp?DocID=13855&langue=EN&namePage=news 166 Interview with Diane Mulligan, Transcript at Annex B3 167 Degener, ‘Challenges and Compliance of the UN CRPD’: 1 168 As an intern within the OHCHR, I often heard reference to the ‘Treaty Body Crisis’ and it was generally accepted by many that the treaty bodies are a poor place to work or undertake an internship due to the lack of progress and heavy workload.

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human rights treaty body system.169 This report reflected on the limited capacity of

treaty bodies to fulfill their mandate, the reporting burden on states and the general

lack of timeliness and effectiveness. It called for the strengthening of treaty bodies

through streamlined reporting processes and increased funding, 170 but this is a

difficult task given the limited financial capacity of the UN.

Another major challenge for the CRPD Committee has been the interpretation

of the Convention. Laszlo Lovaszy, who is a member of the CRPD Committee noted

in an interview:

…the Committee is in a very fragile situation due to the fact that the Convention has to be and will have to be interpreted continuously for further understanding and better application.171

To address the issue of interpretation, the CRPD Committee has devoted much time to

the development of General Comments, which clarify the intent of particular articles

for all states. To date General Comments have been adopted in relation to Article 9 on

accessibility and Article 12 on equal recognition before the law. The development of

these General Comments was a lengthy process starting with a day of discussion with

DPOs on each topic, the preparation of a draft by the Committee with the support of

the secretariat, and the publication of these drafts with submissions sought from

interested bodies. Forty-three submissions were received in relation to accessibility,

and seventy-three submissions were received on equal recognition before the law.

These submissions came from a mix of DPOs, governments, national human rights

institutions, regional organisations, universities and individuals. 172 The General

Comments were revised and adopted by the committee following a public reading in

April 2014.

In addition to the development of General Comments by the CRPD

committee, there have been other efforts to clarify the intent of the CRPD. The IDA

seeks to provide guidance to DPOs in its network about the implementation of the

                                                                                                               169 N. Pillay, Strengthening the United Nations human rights treaty body system – A report by the United Nations Human Rights Commissioner (Geneva, OHCHR, June 2012), http://www2.ohchr.org/english/bodies/HRTD/docs/HCReportTBStrengthening.pdf 170 Pillay, Strengthening the United Nations human rights treaty body system: 10-15 171 Interview with Laszlo Gabor Lovaszy, Member of the CRPD Committee from Hungary and Adviser to Ádám Kosa, member of the European Parliament, this interview was not conducted in person as the subject, who is a deaf person and sign language user, expressed a preference for responding to questions by email, response received 23 April 2014, text at Annex B5 172 ‘Draft General Comment on Article 12 of the Convention - Equal Recognition before the Law & Draft General Comment on Article 9 of the Convention – Accessibility’, UN OHCHR, accessed 15 May 2014, http://www.ohchr.org/EN/HRBodies/CRPD/Pages/DGCArticles12And9.aspx

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CRPD at a national level and has worked with its members to develop implementation

guidelines, which provide advice on the adoption of national legislation, on working

within a UN legal framework, and also looks at examples of how other UN

conventions have been implemented.173 Finally, Marianne Schulze, who is a disability

advocate who was involved in the negotiations of the convention, has also published a

handbook on Understanding the United Nations Convention on the Rights of Persons

with Disabilities, which lists every article and explains its background and the

positions taken by civil society representatives during negotiations.174 This handbook

was described as an enormously useful resource by a number of disability advocates

during informal discussions at United Nations meetings. The proliferation of

documents aiming to explain the CRPD is indicative of ongoing issues with its

interpretation.

Coupled with the lack of understanding is a lack of interest and engagement

amongst member states and their citizens. Lovaszy observed that ‘most State parties

that ratified it so far have not been observed and engaged in constructive dialogues’.

Diane Mulligan who is another CRPD member who I interviewed, commented that ‘a

lot of people in the UK have never heard of the Convention’.175 As there is significant

confusion surrounding the exact meaning of many articles, states that ratify the

convention may take a limited view of their own responsibilities. Given the limited

capacity of the CRPD Committee there is also little to force them to do more to meet

their obligations.

Article 12 remains the most controversial article of the CRPD and illustrates

some of the issues associated with interpretation and lack of engagement. An

employee of EDF noted in an interview that most member states fail to understand

this article.176 Article 12 states that people with disabilities should ‘enjoy legal

capacity on an equal basis with others’.177 Civil society representatives who were

involved in negotiations of the CRPD believe that this clause abolishes all substituted

                                                                                                               173 International Disability Alliance, ‘Towards the full implementation of the CRPD’, 31 January 2012, accessed 15 May 2014, http://www.internationaldisabilityalliance.org/sites/disalliance.e-presentaciones.net/files/public/files/Final%20Report_CRPD%20Implementation%20Guidelines%20Project_AusAID.pdf 174 M.Schulze, Understanding the UN Convention on the Rights of Persons with Disabilities (New York, Handicap International, July 2010), accessed May 2014, http://www.equalityhumanrights.com/uploaded_files/humanrights/unconventionhradisabilities.pdf 175 Interview with Diane Mulligan, transcript at Annex B3 176 Interview with a Human Rights Officer at the European Disability Forum, transcript at Annex B6 177 UN General Assembly, Convention on the Rights of Persons with Disabilities: Article 12

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decision-making, including guardianship, 178 however, this has not been the

interpretation of many states. The EU Agency for Fundamental Rights (AFR)

revealed that many EU states have revised their laws on legal capacity since

ratification of the UN Convention. Nevertheless guardianship can still be applied

across all member states except Germany and Sweden.179 The recently agreed General

Comment has sought to provide clarification and calls specifically for the abolition of

substituted decision-making including plenary guardianship, judicial interdiction and

partial guardianship.180. The General Comment was worded strongly in response to a

number of submissions suggesting that Article 12 had not been effectively

implemented in many states, including a submission from the AFR.181

One issue of particular relevance to supporting the legal capacity of persons

with disabilities, but which also applies to anti-discrimination approaches more

generally, is that access to courts can be costly and requires resources. The General

Comment on Article 12 outlines the obligation of states to provide support to people

with disabilities to exercise their legal capacity, but is not specific about what form

this support might take and therefore does not strictly require that funds be allocated

directly to assist people with disabilities accessing legal representation. States can also

argue that they have improved support for people to exercise their legal capacity

through smaller measures such as placing ramps at the entrances of court buildings.182

There are still significant opportunities for states to interpret their obligations

narrowly if they desire.

The CRPD acknowledges that the rights of people with disabilities extend

across a broad range of government policy areas and it contains articles on education,

health, employment and justice. These are gigantic issues and are largely under the

control of member state governments through their mainstream systems, in which is

difficult to promote the recognition of disability as a policy issue. One of the aims of

the CRPD is therefore that states consider disability when developing policies on

health, education, employment and justice.

                                                                                                               178 Schulze, Understanding the UN Convention on the Rights of Persons with Disabilities: 91 179 EU Agency for Fundamental Rights, ‘Legal capacity of persons with intellectual disabilities and persons with mental health problems’ (Luxembourg: Publications Office of the European Union, 2013) http://www.ohchr.org/Documents/HRBodies/CRPD/GC/EuropeanUnionAgency1Art12.pdf 180 UN CRPD Committee ‘General Comment No. 1 (2014) - Equal Recognition before the Law’, http://tbinternet.ohchr.org/_layouts/treatybodyexternal/Download.aspx?symbolno=CRPD/C/GC/1&Lang=en: 1-4 181 EU Agency for Fundamental Rights, ‘Legal capacity of persons with intellectual disabilities’ 182 UN CRPD Committee ‘General Comment No. 1’: 4-5

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Despite this intention, there is evidence that disability remains somewhat

marginalized even within the UN system. The buildings of the UN are often

physically inaccessible to people with disabilities. During an interview, a senior UN

official recounted the story of a blind person being unable to take his guide dog into

the UN premises in New York to attend a consultation on disability inclusive

development.183 The Human Rights Council is the main UN body that deals with

Human Rights issues, but it rarely addresses issues relating to the rights of persons

with disabilities. There is an annual discussion on the rights of people with

disabilities, but this is usually poorly attended in comparison to other Sessions. A

recent project has aimed to improve the accessibility of the Human Rights Council to

people with disabilities by making one panel discussion fully accessible at each

session, including through sign language interpreting and real time captioning.

However, the panels selected for this project have been those relating to disability

issues or the rights of other disadvantaged groups such as women and indigenous

persons. These panels receive less attention than high profile agenda items, such as

discussions about the situation in the Syrian Arab Republic.

In today’s UN, disability largely remains the concern of the CRPD committee,

which has more work than it can handle, and many working within the field of

disability policy within the UN lament the lack of attention towards disability within

the other treaty bodies including the Committee on the Rights of the Child, the

Committee on Torture, the Committee on Economic, Social and Cultural Rights, and

within the broader UN system.184 The main priority in the UN today and the key focus

in all internal conversations in the Office of the High Commissioner for Human

Rights is the post-2015 development agenda, which will set priorities after 2015, the

original deadline for achieving the Millennium Development Goals (MDGs). Despite

the large number of persons with disabilities in the developing world, there were no

references to disability in the original MDGs, and as an intern in the OHCHR I heard

many individuals within UN disability policy circles voice the fear that, despite

lobbying from the disability community, disability might not be considered in the

post-2015 agenda. This on-going struggle for recognition suggests that disability is

still not a high profile issue within the UN system. The failure to mainstream

                                                                                                               183 Interview with a senior UN diplomat from Ecuador, transcript at Annex B1 184 This was a point that was raised in numerous conversations with staff of the United Nations during my time there as an intern.

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disability fully is also suggested by a recent resolution passed in March 2014

supporting the appointment of a Special Rapporteur on Disability, reporting to the

Human Rights Council.185 Despite the existence of a specific committee on the rights

of people with disabilities, the Human Rights Council felt a further mechanism is

necessary to address the issue of disability.

As has been seen, there are a number of challenges at UN level, including

interpretation of the CRPD and the capacity of the CRPD committee to monitor

implementation. There is also an ongoing battle to ensure disability is recognized as

an issue of importance within the broader UN. If these challenges are evident even at

the UN, it seems that significant problems may also be encountered in addressing

disability at a state level and at a regional level. This leads to the question of disability

policy at the EU today.

3.4 Disability rights in the EU

The European Union has continued to emphasise the human rights of people with

disabilities in its publications and its website stresses that ‘The EU promotes the

active inclusion and full participation of disabled people in society, in line with the

EU human rights approach to disability issues’.186 The European Union signed the

CRPD in 2007 and ratified it in 2010. The ratification of the CRPD will eventually

require the EU to report to the CRPD committee in Geneva on implementation. This

raises questions about what the EU can reasonably be expected to achieve in disability

policy, when it largely remains the responsibility of individual member states. Laszlo

Lovaszy who works within the EU parliament and is a member of the CRPD

Committee, stated in an interview:

I think that the EU itself has not recognised its entirely new role as the first regional organisation [that] joined the UNCRPD and perhaps it has not understood fully the obligations stemming from the UNCRPD.187

The European Union’s disability policy today is broadly set out in the European

Disability Strategy 2010-2020, which sits under the broader framework of anti-

discrimination, signaling the continued importance of anti-discrimination approaches.                                                                                                                185 Human Rights Council, The Right to Education of Persons with Disabilities, Resolution 25/L.30 (24 March 2014): http://www.un.org/ga/search/view_doc.asp?symbol=A/HRC/25/L.30 186 ‘People with Disabilities’, European Commission, accessed 25 April 2014: http://ec.europa.eu/justice/discrimination/disabilities/index_en.htm 187 Interview with Laszlo Gabor Lovaszy, Text at Annex B5

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This European Disability Strategy is thematically based around eight areas for action:

accessibility, participation, equality, employment, education and training, social

protection, health, and external action.188 These thematic areas for action are heavily

based on the CRPD, but many actions under these themes will need to be

implemented at member state level and there are few specific initiatives which the EU

itself can develop and implement.

The European Commission’s website for disability highlights two small EU

accessibility initiatives. The first is the development of a common EU Disability

Parking Card,189 and the second is the Access City Award, which recognises the

efforts of European cities to improve accessibility.190 These initiatives both broadly fit

within the framework of other EU priorities and activities, as the common parking

permit is focused on improving the mobility of citizens, and the Access Cities Award

looks to improve the competitiveness of Europe’s tourism industry. A new piece of

Accessibility legislation, the European Accessibility Act, is also under development.

It was planned for introduction in 2012191 but this is yet to occur. These small

initiatives reflect the limited opportunities for the EU as a direct actor in disability

policy.  

One change that has come about in EU policy since the ratification of the

CRPD is that funding under the European Structural and Investment funds is

contingent on capacity for implementation of the UN CRPD.192  Structural and

Investment funds provide support to the poorer regions of the European Union, and

make up a large proportion of the EU budget. Essentially, this EU structural funding

cannot be allocated where it is inconsistent with the CRPD. An example would be that

                                                                                                               188 European Commission, European Disability Strategy 2010-2020: A Renewed Commitment to a Barrier-Free Europe, Brussels, 15.11.2010, COM (2010) 636 final, http://eur-lex.europa.eu/legal-content/en/ALL/?uri=CELEX:52010DC0636 189 ‘EU Parking Card’, European Commission, accessed 27 April, 2014http://ec.europa.eu/justice/discrimination/disabilities/parking-card/index_en.htm 190 ‘Access City Award 2014’, European Commission, accessed 27 April 2014, http://ec.europa.eu/justice/discrimination/disabilities/award/index_en.htm 191 European Commission, ‘European Accessibility Act: legislative initiative to improve accessibility of goods and services in the Internal Market’, June 2011, Accessed 27 April 2014, http://ec.europa.eu/smartregulation/impact/planned_ia/docs/2012_just_025_european_accessibiliy_act_en.pdf 192European Parliament and European Council Regulation (EU) No 1303/2013 of 17 December 2013 laying down common provisions on the European Regional Development Fund, the European Social Fund, the Cohesion Fund, the European Agricultural Fund for Rural Development and the European Maritime and Fisheries Fund and laying down general provisions on the European Regional Development Fund, the European Social Fund, the Cohesion Fund and the European Maritime and Fisheries Fund and repealing Council Regulation (EC) No 1083/2006, (2013) OJ L347/320, http://eur-lex.europa.eu/legal-content/EN/TXT/?uri=CELEX:32013R1303

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funding could not be provided to build or maintain residential institutions for people

with disabilities, as this would be contrary to the CRPD’s emphasis on community

living.

  A specific area of focus for the EU has been disability and ‘external action’,

which means how disability is taken into account in the EU’s foreign policy,

particularly as regards its international development policy. This element stands out

within the European Disability Strategy, which states:

The EU and the Member States should promote the rights of people with disabilities in their external action, including EU enlargement, neighbourhood and development programmes. The Commission will work where appropriate within a broader framework of non-discrimination to highlight disability as a human rights issue in the EU’s external action.193

This emphasis is consistent with the European Union’s more general focus on

promoting human rights through external affairs. Human rights are a critical aspect of

the EU’s enlargement policy, with aspiring EU member states required to meet strict

human rights standards in order to achieve membership.194 When negotiating trade

agreements with other nations from around the world the EU also requires that they

adhere to human rights standards. This emphasis on human rights through external

action is part of the international branding of the EU as an entity focused on the

values of human rights, and it is one way in which the EU can expand its influence

and define its identity in an international context.195 However, it can also be extremely

difficult for the EU to enforce the fulfillment of these requirements in practice.

Whether states have met these requirements is usually assessed based on whether they

have signed and ratified the UN CRPD, but as has been seen, states often take a

limited view of their responsibilities under the CRPD.

Today in the EU there are a number of working groups and bodies devoted to

disability. Since 1980, there has been a Disability Intergroup at the European

Parliament, bringing together members of the European Parliament with an interest

and an involvement in disability policy. This group was re-established in December

2009 and now focuses more strongly on the obligations of European nations under the

                                                                                                               193 European Commission, European Disability Strategy: 9 194 Basu et al ‘The European Union’s Participation in United Nations Human Rights and Environmental Governance: Key Concepts and Major Challenges’ in The European Union and multilateral governance: assessing EU participation in United Nations human rights and environmental fora, ed. Wouters et al. (Basingstoke: Palgrave Macmillan, 2012): 8-9 195 Michael Smith, ‘Foreign policy and development in the post-Lisbon European Union’, Cambridge Review of International Affairs 26: 3 (2013), 520-21.

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UN convention.196 There is also a High Level Group on Disability, which was

established following the European Union’s 1996 human rights-based disability

strategy. This group is composed of representatives of social services departments

within EU member states. Since 2006, the role of this group has also turned to

monitoring the implementation of the CRPD in member states. Consistent with the

requirements for all states under the CRPD, the European Union involves civil society

in many decision-making processes. The EDF provides the secretariat for the

Disability Intergroup and also has observer status on the High Level Group on

Disability. A staff member of EDF noted in an interview:

I think you can see that our area is one the areas most consulted for civil society because of the CRPD and the ratification of the EU of course. They have a little bit more obligation towards consulting us than other groups.197

She did note, however, that the European Commission and the European Parliament

were accessible and easy to consult, but that access to the Council of the European

Union is more challenging.198 The EDF acts as an intermediary between people with

disabilities and European Union. The interviewee interpreted the role of her

organization as representing ‘the lived experience of people with disabilities’ and

providing ‘practical solutions’,199 yet her language and description of the daily work

of the EDF was largely characterized by European Union bureaucratic language. She

spoke mostly of EU working groups and institutional frameworks rather than the lived

experiences of people with disabilities, suggesting that her organization works as a

conduit between people with disability and the complex legal and bureaucratic

systems of the EU.

Finally, a major role of the EU has been to sponsor research in the field of

disability. The Academic Network of European Disability experts (ANED) is funded

by the EU and conducts research to guide European disability policy. It was

established in 2007 and is funded by the European Commission. ANED brings

together academics from centres of disability research such as the University of Leeds

in the United Kingdom, where experts including Mark Priestly and Anna Lawson are

based, and also involves other academics such as Lisa Waddington from the

                                                                                                               196 ‘Disability Intergroup’, European Disability Forum, accessed 26 April 2014, http://www.edf-feph.org/Page_Generale.asp?DocID=18390 197 Interview with a Human Rights Officer at the European Disability Forum, interviewee was a young Belgian woman, interview conducted by skype 24 April 2014, transcript at Annex B6 198 Interview with a Human Rights Officer at the European Disability Forum, transcript at Annex B6 199 Interview with a Human Rights Officer at the European Disability Forum, transcript at Annex B6

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University of Maastricht. The ANED has a range of work priorities, but its dominant

focus appears to be studying laws and legal approaches. Its first priority is monitoring

the laws and policies of EU member states, its second priority is monitoring data and

statistical indicators and its third priority is monitoring the laws and policies of the

EU. Other research areas include employment, social inclusion, independent living

and accessibility.200 The ANED research team has a number of ‘strand leaders’, who

coordinate in particular research areas with Professor Lisa Waddington coordinating

in the area of European Law, Mark Priestly coordinating on national strategies and

social policies and Stefanos Grammenos from the Centre for European Social and

Economic Policy leading on statistical indicators.201 A staff member of EDF identified

Waddington as the academic with whom they worked closely and who guides their

academic work.202. In fact, Waddington holds the EDF Chair in European Law at

Maastricht University, which is a position funded by the EDF and therefore also

supported by the EU. Gerard Quinn, who is another legal expert, is also frequently

consulted at European level. He used to work for the European Commission himself

and was the First Vice President of the European Committee of Social Rights at the

Council of Europe.203 His name came up regularly in informal conversations with

policy makers and civil society representatives. The EU ensures the continued

dominance of legal and anti-discrimination approaches to disability through its

support for these academic experts.

3.5 The rhetoric and reality of EU disability policy

It is critical to note that the expansion of rights based policies and disability

legislation in the European Union does not necessarily translate into specific benefits

for people with disabilities. Twenty-five current member states of the European Union

have now ratified the CRPD and are taking action to implement it.204 A 2012 ANED

                                                                                                               200 ‘Themes’, Academic Network of European Disability experts, accessed 26 April 2014, http://www.disability-europe.net/theme 201 ‘About Us’ Academic Network of European Disability experts, accessed 26 April 2014, http://www.disability-europe.net/about-us 202 Interview with a Human Rights Officer at the European Disability Forum, transcript at Annex B6 203 ‘Prof Gerard Quinn’, University of Galway, accessed 1 June 2014, http://www.nuigalway.ie/cdlp/staff/gerard_quinn.html 204 European Commission, ‘Sixth Disability High Level Group Report on the Implementation of the UN Convention on the Rights of Persons with Disabilities’, September 2013, accessed 26 April 2014,

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report prepared by Mark Priestly on ‘National disability policies in European

countries in the context of the 2012 National Social Reports (NSRs)’ found that the

number of countries with National Disability Strategies and Action Plans has

increased in the context of the CRPD, which requires states to report on the situation

of people with disabilities in their jurisdictions. Disability legislation has also been

introduced and revised in a number of countries, particularly legislation relating to

accessibility and the built environment.205 However, despite a proliferation of national

disability strategies and disability legislation, the report also drew attention to cuts in

social services and pensions for persons with disabilities in many countries, and

reported little evidence of reforms targeting workforce participation.206 In Austria, for

example, a 2012 National Action Plan on implementation of the CRPD and on the

human rights of persons with disabilities was agreed,207 but the nation has also seen

benefits cuts and has delayed plans to make all public buildings accessible.208 The

reports of the High Level Group on Disability are also suggestive of this state of

affairs. The reports focus on the efforts taken by EU members to implement the

CRPD, however, the main focus is on the development of coordination mechanisms

within governments such as working groups and monitoring committees. The

existence of these mechanisms reveals little about the actual situation of persons with

disabilities. This emphasis on processes could be understood for the member states

that have only ratified the CRPD very recently, however, it is also the case for

member states that were early to ratify the CRPD. For example, Germany ratified the

CRPD in 2008, but the most recent report of the High Level Group from 2013 still

emphasizes the establishment of coordination and monitoring mechanisms and

processes to involve persons with disabilities in policies. There is no reference to

concrete outcomes.209

This situation has also been acknowledged by people working in the field of

disability policy. In an interview conducted for this study, Stig Langvad, a member of

                                                                                                                                                                                                                                                                                                                             http://ec.europa.eu/justice/discrimination/files/dhlg_6th_report_en.pdf. The states which have not yet ratified are Finland, Ireland and the Netherlands. 205 M. Priestly, ‘National disability policies in European countries in the context of the 2012 National Social Reports (NSRs)’, Summary overview prepared by Mark Priestley on behalf of the Academic Network of European Disability experts (ANED), accessed 27 April 2014, http://www.disability-europe.net/: 5-8 206 M. Priestly, ‘National disability policies’: 9-18 207 M. Priestly, ‘National disability policies’: 5 208 M. Priestly, ‘National disability policies’: 14 209 European Commission, ‘Sixth Disability High Level Group Report’: 30-33

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the Executive Board of the European Disability Forum and the Chair of the body

representing Danish Disabled Peoples Organisations, concluded that the European

Union had made some important achievements, particularly coordinating accessibility

arrangements based on extensive lobbying by EDF. However, he was generally

pessimistic about the disability policy environment in Europe based on the actions of

national governments:

The last few years we have discovered that the willingness, the political willingness, to support the disability perspective, or disability politics is declining. On one hand you have the perspective of human rights as also covering persons with disabilities, but on the other hand you have less political willingness to pay for the content of the disability politics and that is actually quite a problem.210

This evidence calls into question the impact of the rights based approach to disability

in Europe, beyond its symbolic value. In another interview, Diane Mulligan reported a

similar result from a British perspective:

…we’d established a lot of rights and a lot of quite good welfare policies that established the rights of people to live independently as part of the community, that kind of thing, which have been eroded away through the Coalition government’s austerity measures. And they’ve just been cut and cut and cut and I think now persons with disabilities in the UK face their most challenging time that they’ve ever faced.211

This gap between rhetoric and reality in contemporary European disability policy

aligns with Edelman’s theory that increased symbolic attention may actually be

associated with decreased real benefits. Governments are still able to congratulate

themselves on their progress in the field of disability policy because of the existence

of policies and strategies, and if this symbolic reassurance is effective they can

effectively reduce real benefits.

Availability of financial resources plays a large role in the challenging

situation for people with disability in Europe today, but it is not the only factor.

Mulligan links the current environment for people with disability in the UK to

austerity measures stemming from the financial crisis. Langvad, however, has a more

nuanced reading of the situation. He acknowledges the effects of the crisis, but

suggests that it is not the sole cause of the current situation. He draws attention to a

more general preference for talk and an unwillingness to act to improve the situation

                                                                                                               210 Interview with Stig Langvad, transcript at Annex B4 211 Interview with Diane Mulligan, transcript at Annex B3

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of people with disabilities on the part of European politicians.212 Langvad does not

perceive there to be intentional discrimination against persons with disabilities, but

suggests there is a lack of understanding and interest on the part of policy makers and

citizens. He identifies changing attitudes as the most critical issue for the future,

providing the example of public transport accessibility in Denmark. In the past ten

years, Denmark’s buses have been made fully accessible following pressure at the EU

level. However, Langvad notes:

…the European Union and EDF could make the rules for creating accessible buses in city environment, but they could not change the attitude so it is also allowed for the driver to get down from his or her seat and assist the person in a wheelchair in getting on board.213

This situation means that people in wheelchairs can only travel on public transport if

they are accompanied by a carer. Despite the progress that has been made in some

areas, there are still barriers that remain and these barriers are not only linked to

financial resources but also relate to deeply ingrained social attitudes.

3.6 Employment and the European economy

Improving the employment rates of people with disabilities has always been a critical

area of European disability policy. Employment reintegration was a particularly

prominent focus for the EU for many years, as has been seen in Chapter 1. Through

the rights-based approach, the EU expanded its focus to include a range of other areas,

but employment continues to be particularly important. Employment provides an

opportunity for people with disabilities to be more integrated and included in society

due to the economic and social benefits associated with having a job. The EU’s

Employment Equality Framework Directive, which was discussed in Chapter 2, is its

primary instrument for encouraging the employment of persons with disabilities. This

legislation is a traditional anti-discrimination instrument, which includes an obligation

to make reasonable accommodations.214

Another method for increasing the employment of people with disabilities has

traditionally been the establishment of employment quotas, and they have been a

feature of the national policy of many European states. While they are unsurprisingly

                                                                                                               212 Interview with Stig Langvad, transcript at Annex B4 213 Interview with Stig Langvad, transcript at Annex B4 214 Waddington, ‘Evolving Disability Policies’: 160

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ineffective when voluntary, quotas have had some success when accompanied by

penalties for employers who did not comply, as was the case in Germany.215 Quotas

have gone out of fashion in recent years as anti-discrimination approaches have

become dominant. Lisa Waddington describes this trend away from quotas and

towards anti-discrimination measures. She supports the move to an anti-

discrimination approach as she suggests that quotas stigmatise people with disability

as less valuable employees. She also draws attention to the limited success of quotas

in most countries, although she does acknowledge that most quotas were voluntary

and that enforced quotas were more successful.216 Quotas and other coercive measures

certainly do not appear in the policies of the EU, nor do other coercive measures such

as tax incentives and subsidized jobs as these measures are inconsistent with the

liberal economic policy of the European Commission which ‘aims to improve the

lives of individuals, as well as bringing wider benefits for society and the economy

without undue burden on industry and administrations.’217 The anti-discrimination

approach with its emphasis on the individual as a holder of legal rights is far more

consistent with the EU’s free market policies.

The EU’s economic approach is also evident in the way it justifies measures to

assist persons with disabilities. The European Union’s statements about disability,

including the European Disability Strategy, place a particularly strong emphasis on

the advantages to the EU economy of improving the situation of people with

disabilities. The European Disability Strategy notes that ‘full economic and social

participation of people with disabilities is essential if the EU’s Europe 2020 strategy

is to succeed in creating smart, inclusive and sustainable growth’, and the aim of the

strategy is to is to ‘empower people with disabilities so that they can enjoy their full

rights, and benefit fully from participating in society and in the European Economy,

notably through the Single market.’218 The expectation is that the measures put in

place in the European Disability Strategy will achieve this improved economic and

social participation. This reflects a common assumption amongst many policy makers

that assisting people with disabilities through social services and addressing

discrimination through legal means will help people with disabilities find

                                                                                                               215 L. Waddington, ‘Reassessing the employment of people with disabilities in Europe: from quotas to anti-discrimination laws’, Comparative Labor Law and Policy Journal, 18 (1996-1997): 68-9 216 Waddington, ‘Reassessing the employment of people with disabilities in Europe’: 70-101 217 European Commission, European Disability Strategy: 4 218 European Commission, European Disability Strategy: 4

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employment, and will therefore have broader economic advantages. Diane Mulligan

stated when interviewed:

…if you look at the cost benefit analysis for every investment of a dollar you are going to get at least double that back from the well functioning participation of people with disability in the workforce…219 While the belief that disability law and welfare policy can improve economic

productivity is reassuring, and provides a justification for the allocation of resources

there are also much broader factors at play. Chapter 1 considered the extent to which

exclusion of people with disabilities can be related to industrial labour markets, which

exclude and marginalize the non-able bodied. Many of these barriers remain present

in the current workplace. Colin Barnes has argued that the United Kingdom’s

Disability Discrimination Act and successive years of policies aimed at improving

workforce participation have failed because of ongoing inequalities in the structure

and organization of the workplace. He suggests that the most significant determinant

of employment outcomes for people with disabilities will be changes to the way in

which society organises work in the context of globalization and the transition to an

information society. However, while new technologies have the potential to improve

outcomes for some educated people with physical disabilities, the disappearance of

low-skilled jobs also has a potentially negative effect for many people with mental

illness and intellectual disabilities.220 Professor Ron McCallum, a member of the

CRPD committee whose background is in labour law rather than disability rights law,

is dismissive of the capacity of disability services and disability rights law to improve

economic productivity and draws attention to the larger structural barriers within the

workplace:

Many of the jobs that many of my sisters and brothers with intellectual disabilities did, have been taken away. Many young persons with disabilities were the photocopiers and the coffee makers. What we’ve run into is a situation where companies are driven by quarterly reports and stock exchanges. What every CEO wants to do (…) they want to cut down labour costs, their share price will go up. So you can do this by outsourcing and eliminating and the groups at the bottom, which tend to be persons with disabilities (…) and tend to be casualties.221

                                                                                                               219 Interview with Diane Mulligan, transcript at Annex B3 220 C. Barnes, ‘A Working Social Model? Disability, Work and Disability Politics in the Twenty-First Century’ Critical Social Policy 20: 4 (2000): 441-457 221 Interview with Professor Ron McCallum, Transcript at Annex B2

  67  

McCallum draws attention to broader economic forces that exclude people with

disabilities and which are unlikely to be solved quickly by welfare policies or by anti-

discrimination legal action.

When disability is considered through the prism of employment, questions

also arise as to how it is defined. The rise in unemployment amongst people with

disabilities in Europe is partly the result of a more general increase in unemployment

amongst the population as a whole, as those who are non-abled bodied or have health

problems are likely to be at the end of the queue. However, as McCallum points out,

the large number of people receiving disability pensions in Europe today has also

coincided with the transition to a more skilled workforce. The growth in recipients of

these payments is largely amongst older unskilled workers who may have health

problems.222 These workers generally do not fit the stereotype of persons with

disabilities, which usually focuses on people in wheelchairs, with vision or hearing

impairment, or with severe intellectual disability. Policies are often not made with this

group in mind at international institutions and these individuals are generally not

receiving care and support through the welfare system. They are also unrepresented in

Disabled People’s Organizations and are therefore unrepresented at the extensive

consultation processes organized by the EU, the UN and national governments.

Nevertheless, these low skilled workers make up a large proportion of recipients of

disability unemployment benefits. While they may not fit the classic image of persons

with disabilities, they are effectively disabled by the modern skilled workforce and by

the economic situation, therefore they meet the definition of disability under the social

model. It can be questioned whether the policies of international organizations such as

the UN and the EU are effective to respond to the needs of this emerging group of

persons with disabilities. They may have access to the courts as victims of

discrimination, they are largely out of sight in policy-making and consultation

processes. Governments and international organizations tend to be cautious about

employing negative stereotypes of persons with disabilities, but it is this group in

particular that still tends to be stigmatized as unworthy and unproductive members of

society and many countries have made efforts to tighten eligibility for pensions.223

                                                                                                               222 OECD, Sickness, Disability and Work: Breaking the Barriers: A Synthesis of Findings across OECD Countries (OECD Publishing, 2010), http://dx.doi.org/10.1787/9789264088856-1-en: 9-10 223 OECD, Sickness, Disability and Work: 9-11

  68  

This group in particular demonstrates the extent to which the situation of people with

disabilities is determined by broader social and economic factors.

As has been seen, the European Union has increased its involvement in a

number of fields since the transition to rights-based approaches to disability, yet it can

be questioned whether its involvement has more than a symbolic value. The growth of

rights-based approaches has been accompanied by a decrease in tangible benefits for

many people with disabilities living in European nations. Many social and economic

barriers remain today and there is significant uncertainty on the part of policy makers

as to how to genuinely improve the situation of people with disabilities. One of the

critical factors for enabling inclusion of people with disabilities is increased

workplace participation, yet there are strong structural barriers that remain in the

workplace that will not be simply addressed through anti-discrimination legislation.

Several interview participants identified awareness raising as particularly important

priority, as society’s attitudes towards disability remain disabling. 224 Changing

attitudes, however, remains a fundamental challenge.

This chapter has considered how human rights approaches have translated into

the modern policy environment at the EU and the UN. The symbolic importance of

the recognition of disability as a human rights issue and the validation of the legal

capacity and autonomy of persons with disability cannot be underestimated in light of

their past treatment. Rights-based approaches have also prompted the development of

a range of laws and policies and have served to raise awareness about disability.

However, it must be concluded that there remain significant barriers for people with

disabilities that are unlikely to be addressed effectively by rights-based approaches.

   

                                                                                                               224 Interview with Professor Ron McCallum, Transcript at Annex B2, Interview with Stig Langvad, transcript at Annex B4 and Interview with a Human Rights Officer at the European Disability Forum, transcript at Annex B6    

  69  

Conclusion

This thesis has looked at changing disability policies over time, in particular how the

human rights approach to disability entered into institutional discourse at the United

Nations and the European Union and how it has been implemented in recent years.

To understand current disability policies the history of attitudes towards

people with disabilities has been considered. While different societies have reacted to

disability in different ways, there is a long and consistent history of prejudice against

those who do not meet physical and mental norms. From ancient times people with

disabilities were the subjects of fear and exclusion. In the nineteenth century people

with disabilities were increasingly treated as objects of charity and medical study and

were placed in institutions where they were physically separated from mainstream

European society. They were also shut out of the industrial workforce, which

marginalises and excludes less productive, non able-bodied workers.

The First and Second World Wars were critical in shaping early disability

policy due to the large number of war veterans with disabilities who were seen as a

highly legitimate and deserving group. Between and following these wars, disability

was treated through medical, physiotherapeutic and pedagogical solutions, and the

focus was on normalising and erasing disability. There was a strong emphasis on

rehabilitation and workforce reintegration that continued to dominate the policies of

international institutions in the 1970s and 1980s.

Since the 1960s and 1970s, the treatment of people with disability has been

questioned and contested by people with disability and their representative

organisations, as they have become more politically engaged and challenged existing

definitions of disability. Disability activists drove a paradigm shift in which disability

was seen as the result of an interaction between individuals and a social environment,

rather than being a deficiency at the level of the individual. This ‘social model of

disability’, caused policy makers to reassess how people with disabilities have been

treated, and international organisations such as the UN and the EU were responsive to

new ideas about disability.

However, the social model of disability was difficult to translate into policy as

it subverts and contests the entire notion of disability. This is problematic for those

designing policies and programmes, as breaking down long held prejudices and

boundaries in society is an enormous and often intangible task.

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In the United States, people with disabilities had also questioned their

treatment in society, but rather than problematizing the notion of disability itself, a

civil rights approach was adopted that saw people with disabilities as a minority group

whose situation could be improved through anti-discrimination legislation. The

Americans with Disabilities Act, which was introduced in 1990, was the most

important example of this kind of legislation and similar legislation was adopted in

many parts of the world, including in the European Union.

The anti-discrimination approach to disability was attractive to international

organizations like the UN and the EU, and became incorporated into their legal

systems in the 1990s and 2000s under the broader discourse of human rights. The

United Nations Convention on the Rights of Persons with Disabilities, which came

into force in 2006 was a particularly important milestone in the transition to a human

rights approach for the UN and the EU. This emphasis on human rights and anti-

discrimination at the UN and the EU today is often equated with the social model of

disability but it is not precisely the same thing. Human rights and anti-discrimination

law, which is its main tool, are easier to apply in a policy setting than the social

model. Anti-discrimination law creates a common language and uniform tools and

definitions that can be applied in different countries, despite the political, social and

cultural differences between nations. This common language is particularly useful for

international organizations that work across a variety of systems, but it also proved

effective to unite diverse civil society groups. In the case of the European Union, the

language of human rights, which can be applied across national boundaries, allowed it

to gain greater influence in an area traditionally dominated by member state

governments and therefore enabled it to increase its legitimacy.

Today the human rights approach to disability continues to be promulgated by

policy makers from international organizations and people with disabilities

themselves, and it is largely unquestioned. The academic experts that provide policy

advice to international organizations are those that support human rights and anti-

discrimination approaches, and they further legitimise this approach. Human rights

and anti-discrimination approaches have given people with disabilities an

unprecedented level of recognition and are highly validating and affirming on a

symbolic level. People with disabilities are now regularly consulted in policy making

at the UN and at the EU, and countries around the world have been forced to reassess

their laws and policies.

  71  

Nevertheless, a closer examination of the implementation of human rights

approaches has raised a number of issues. Despite an increased recognition of

disability rights through the CRPD, the issue of disability continues to be peripheral in

the United Nations system. The Committee on the CRPD, which was created to

oversee its implementation, does not have sufficient capacity to fulfill the tasks for

which it was established. There is a lack of understanding and lack of willingness

amongst many states that have ratified the CRPD to meet their obligations. The

European Union’s actions in the field of disability also reveal a significant gap

between rhetoric and reality. There has been a proliferation of policy strategies and

anti-discrimination laws in member states, but at the same time concrete benefits for

people with disabilities, such as pensions and social services, are being reduced. A

cynical observer could conclude that human rights approaches are a cover to remove

benefits from people with disabilities by providing symbolic recognition of their

concerns and ensuring their quiescence. While it seems implausible that governments

are consciously seeking to worsen the situation of persons with disabilities, this trend

towards greater legal rights and fewer social services is potentially of concern for the

wellbeing of people with disabilities if it is to continue.

It is necessary to recognize that many structural barriers for people with

disabilities remain in our societies. The human rights model has provided important

legal recognition, but the legal and anti-discrimination approach has not succeeded in

addressing some of the deeply ingrained social and economic barriers, which

contribute to the exclusion of people with disability from mainstream society.

Defining disability and the fluid and culturally relative nature of disability as a

concept also remains problematic for policy makers. A challenge for the future is

shifting attitudes and raising awareness of the barriers faced by people with

disabilities, but it seems that the human rights approach may not be the appropriate

mechanism to do this.

This thesis has shown the particular historical context within which the human

rights approach to disability has emerged and how this context has shaped its

implementation. A more nuanced and less teleological view of the human rights

approach to disability has potential to inform future policy making at international

organizations such as the United Nations and the European Union.

 

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Annex A: List of key UN and EU documents relating to disability United Nations The United Nations was not involved in disability until the 1970s. It published a number of non-binding declarations and resolutions, culminating with the Convention on the Rights of Persons with Disabilities in 2006, which is a legally binding instrument. 1971 Declaration on the Rights of Mentally Retarded Persons. GA res. 2856

(XXVI) Medical definition of disability and emphasis on rehabilitation. 1975 Declaration on the Rights of Disabled Persons. GA res.2856 (XXVI). Medical definition of disability and emphasis on rehabilitation. 1982 World Programme of Action Concerning Disabled Persons. Resolution 37/52

Continued emphasis on rehabilitation but also a new emphasis on ‘equalization of opportunities’ and the impact of disability in other domains such as education and culture.

1993 The Standard Rules on the Equalization of Opportunities for Persons with

Disabilities. Adopted 20 December 1993, resolution 48/96 These rules summarized the message of the World Programme of Action, but

the prior emphasis on rehabilitation had disappeared. 2006 Convention on the Rights of Persons with Disabilities. A/RES/61/106. An anti-discrimination instrument covering a broad range of domains

including justice, accessibility, employment, education and health. European Union From the 1970s the European Union published a number of policy documents and strategies relating to disability, however, its focus was initially on rehabilitation and workplace reintegration. The EU did not represent disability as a human rights and anti-discrimination issue until the mid to late 1990s.  1972 La communauté européenne et les handicapés: The European Community and

the handicapped. January 1972 Brochure emphasizing rehabilitation and employment integration. 1974 Comparative study on the rehabilitation of handicapped persons in the

countries of the Community. Legal, administrative and technical aspects. Volume I: Introduction, Belgium, France, Italy, Luxembourg. 3229/74. EU Commission Working Document

Volume II: Federal Republic of Germany, Netherlands. 4055/74 Compares existing rehabilitation arrangements in EU member states.

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1979 Report from the Commission to the Council on the initial community action programme for the vocational rehabilitation of handicapped persons (period 1974-1979). COM (79) 572 final. Describes the European Union’s early efforts to coordinate rehabilitation across member states.

1980 The European Community and the handicapped. European File 8/80. Short publication emphasizing rehabilitation and employment integration 1988 Report from the Commission on the application of Council Recommendation

86/379/EEC of 24 July 1989 on the employment of disabled people in the Community. COM (88) 746 final.

Looks at employment policies for people with disabilities across different EU member states. Also continues to refer to rehabilitation.

1991 Interim Report by the Commission on the implementation and results of the

Helios programme promoting economic and social integration of disabled people in the European Community (Period 1.1.1988 - 30.6.1990). SEC (91) 299 final

Continued emphasis on vocational rehabilitation and workforce integration. Also refers to other areas of disability policy such as education and accessibility and the use of new technologies.

1996 Communication from the Commission to the European Parliament, the

Council, the Economic and Social Committee and the Committee of the Regions. Interim evaluation report on the HELIOS II programme. COM (96) 8 final.

  A greater emphasis on equal opportunities and the rights of people with disabilities. A greater involvement for NGOs.  

 1996 A new European Community disability strategy. Communication of the

Commission. Draft Resolution of the Council and of Representatives of the Governments of the Member States meeting within the Council on equality of opportunity for people with disabilities. COM (96) 406 final.

Strong focus on equalization of opportunities and the negative effects of exclusion and discrimination. This document was influenced by the UN Standard Rules on the Equalization of Opportunities for Persons with Disabilities.

2000 Equal treatment in employment and occupation. Directive 2000/78/EC of

27 November 2000, establishing a general framework for equal treatment in employment and occupation. This directive focuses on anti-discrimination primarily in the field of employment. It demonstrates the emergence of anti-discrimination law in the EU.

2003 Equal opportunities for people with disabilities: a European action plan (2004-

2010) COM(2003) 650 Strategy focusing on the rights of people with disabilities and aiming to

implement the Employment Equality Directive of 2000.

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2008 First High Level Group Report on the Implementation of the UN Convention

on the Rights of Persons with Disabilities Focusing on strategies and coordination mechanisms in place for the

implementation of the UNCRPD. 2009 Second High Level Group Report on the Implementation of the UN

Convention on the Rights of Persons with Disabilities Focusing on strategies and coordination mechanisms in place for the

implementation of the UNCRPD. 2010 European Disability Strategy 2010-2020: A Renewed Commitment to a

Barrier-Free Europe. Brussels COM (2010) 636 final. Strategy based on the UN CRPD. Covers non-discrimination in a range of domains including health, education, employment and accessibility.

2010 Third High Level Group Report on the Implementation of the UN Convention on the Rights of Persons with Disabilities

Focusing on strategies and coordination mechanisms in place for the implementation of the UNCRPD.

2011 European Accessibility Act: legislative initiative to improve accessibility of

goods and services in the Internal Market. An outline of intended accessibility legislation. Legislation yet to be passed. 2011 Fourth High Level Group Report on the Implementation of the UN

Convention on the Rights of Persons with Disabilities Focusing on strategies and coordination mechanisms in place for the

implementation of the UNCRPD. 2012 Fifth High Level Group Report on the Implementation of the UN Convention

on the Rights of Persons with Disabilities Focusing on strategies and coordination mechanisms in place for the

implementation of the UNCRPD. 2013 Sixth High Level Group Report on the Implementation of the UN Convention

on the Rights of Persons with Disabilities Focusing on strategies and coordination mechanisms in place for the

implementation of the UNCRPD.  

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Annex B: Interviews  

Interview Methodology In the course of research for this thesis, I conducted interviews with individuals working in the field of disability policy at the UN and the EU. Most interview candidates were contacted by email, but I also approached several candidates in person while working as an intern at the United Nations Office of the High Commissioner for Human Rights. In my initial contact with the candidates, I explained that the topic of my thesis was the transition to a human rights approach to disability. The majority of individuals I contacted agreed to be interviewed, however, two individuals declined: a representative of an international DPO, and a disability academic and civil society advocate. The following interviews were conducted:

1. A senior diplomat from Ecuador who was heavily involved in the working group that negotiated the Convention on the Rights of Persons with Disabilities, conducted in Geneva, 9 December 2013 (Recorded, transcript below)

2. Professor Ron McCallum, member of the Committee on the Rights of Persons with Disabilities from Australia, Former labour lawyer and legal academic at the University of Sydney, interview conducted in Geneva, 7 April 2014 (Recorded, transcript below)

3. Diane Mulligan, member of the UN Committee on the Convention of the Rights of Persons with Disabilities from Great Britain, Working for CBM International in Disability and International Development, interview conducted in Geneva, 8 April 2014 (Recorded, transcript below)

4. Stig Langvad, Member of the Committee on the Convention on the Rights of Persons with Disabilities from Denmark, Chair of Disabled Peoples’ Organisations Denmark and Executive Member of the European Disability Forum, conducted by skype, 12 April 2014 (Recorded, transcript below)

5. Laszlo Gabor Lovaszy, Member of the CRPD Committee from Hungary and Adviser to Ádám Kósa, member of the European Parliament, this interview was not conducted in person, as the subject who is a deaf person and sign language user expressed a preference for responding to questions by email, response received 23 April 2014 (email response below)

6. A Human Rights Officer at the European Disability Forum, interviewee was a young Belgian woman, conducted by skype 24 April 2014 (Recorded, transcript below)

7. A German law professor, person with disability and member of the Committee on the Rights of Persons with Disabilities, interview conducted in Geneva, 7 April 2014 (interview unrecorded as permission to record was not granted)

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I sought to record all interviews, but one participant declined to be recorded. I also offered to make all interviews anonymous in the final study. Three interviewees accepted this offer and four were happy to be named. I applied a similar interview technique for all interviews, with the exception of my interview with Laszlo Gabor Lovaszy, who is a deaf person and sign language user and therefore asked to respond to my questions by email. For this particular interview, four general questions were posed and a written response was received (See response at B5) The remaining interviews were conducted in a semi-structured manner. I asked subjects to speak about their personal experience in disability policy and followed up with further questions to explore issues that they themselves had raised. During the interviews I also gave cues to interviewees to seek their views on the following specific issues:

• Changes in disability policy during the time they had worked in the field • The emergence of human rights approaches • The negotiations of the UN CRPD (where relevant) • The expertise (academic and other) that guides their work in disability policy • The involvement of the EU in disability policy

The weakness of my interview sample is that I made contact with interview participants while I was an intern at the UN OHCHR and while attending the 11th session of the CRPD Committee in Geneva. The majority of participants were therefore working within UN policy circles. Five of the six interviews were conducted with UN CRPD committee members and one with a UN diplomat. I did, however, make separate contact with the European Disability Forum, to establish a more independent European angle and conducted an interview with a Human Rights Officer. As individuals working closely with the UN and the EU, it could be expected that interview participants would be in favour of the human rights and anti-discrimination approach. This was broadly the case, however, several participants (McCallum, Mulligan, Langvad, Lovaszy) were also highly sensitive to the implementation problems associated with the human rights approach and were prepared to speak about these issues. Interestingly the four interview participants who were willing to be named in this study were the most critical of current disability policy. This is probably because they were less strongly attached to the EU and the UN and therefore more willing to speak openly. The interviews reveal participants’ evaluative opinions on the human rights approach and the current situation in disability policy. The interviews also provide information about the functioning of the United Nations and the European Union, through the way in which participants represent their own work and the work of their organisations. The transcripts of the six recorded interviews are presented below.

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B1. Interview with a senior diplomat from Ecuador Interviewee was heavily involved in the working group that negotiated the Convention on the Rights of Persons with Disabilities, conducted in Geneva, 9 December 2013. Interviewer: The focus of my research is how disability policy has shifted to a human rights framework. Previously disability was not really seen as a human rights issue… Subject: The United Nations was heavily involved in the issue of human rights and disability. It had the decade of disabled persons, it had the standard norms and from there the Human Rights Commission approved the resolution, I think in 98, and that went up to New York and went to the General Assembly and was prompted by the Mexicans among other governments to create a working group that would analyse, elaborate…it’s a long chain. In 2002 the General Assembly accepted that, approved it by consensus, the working group, you know the history of it… (extract removed for anonymity) …Then it was signed in March 2007. Ecuador was the 20th country to ratify it so it came into force. The first country was Jamaica, but you can find that in UN enable web. Interviewer: I would be interested in your view on what you think made the convention possible at that point in time. Were there particular states that heavily pushed it? Subject: There were states who pushed it and there were states who opposed it. The states that opposed it were the United States and Europe. They were the most adamant ones. I remember an American delegate who said something like “why don’t we study the 192 legislations of the countries of the United Nations and come back in a decade”. I think the American experience was an interesting one because it exemplified what happened in the others. The Americans in the George Bush period were not very involved in the United Nations and weren’t going to sign and weren’t going to ratify it, and then the civil society and especially the disability society participated in lobbying and got Barbara Bush, I believe, to help since, this is what I recall, people there who got the American administration to change position from saying “I won’t sign it and I will oppose it” to saying “I will not sign and I will not ratify it but I will be helpful”. The ambiance in the hall changed because many people followed the American example of opposing it. The Europeans changed faster than the Americans because of Brussels. I remember a delegate from Spain saying that “we are opposed to the disability convention. The next thing will be something like the Roma convention in the future. We think that the treaty bodies are enough to deal with this issue.” But it also meant a shift in mentality and the paradigm shift from a medical model to a human rights model. Now the initiative of doing this came from UN New York, DESA especially, not from the Human Rights world. The Human Rights office was very adamant about not having a convention at this point in time. It was not really engaged. It sent some minor, not very high level, delegates to New York. In the beginning delegates sent people, there is an Australian gentleman you should contact called Brian Burdikin, who worked here in Geneva under the auspices of (inaudible) He was in a project here in the Office of the High Commissioner on

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Human Rights National Commissions. Look him up. He was in one of the first meeting and was a friend of mine. To end the American story the ambiance changed when President Obama came in. He had offered to sign the convention and in fact he signed and I was at the Whitehouse…That is to say that the Americans were still trying to ratify and civil society still trying to ratify. Interviewer: It’s interesting because the human rights model seems to have first emerged in the US back in the 1990s with the ADA… Subject: The Americans with Disabilities Act was basically a George Bush senior initiative. This is why Barbara Bush was involved in this because she believed that this was a major success of his presidency. My impression is that the issue of rights was there, but it ran into a serious of problems because if you were disabled, in order to get work using it, if you took your pill, therefore you weren’t disabled and you didn’t have any rights to the job market. They had to legislate later and this was done 2006 or 2007 when Congress passed another law on this issue. Yes it stands to reason that if you have an ADA act it is more advanced in many cases than other legislation, besides of the 192 countries at the time, 70 or more did not have legislation. And at this point, you have 158 countries who have signed it and then you have many countries that will not be signing or are in conflict. My impression in that sense is that the human rights based model as the convention cited a whole range of issues that were never contemplated in the documents because you had work, education, universal design, accessibility, the right to death, the right to life. You had all these issues and you had a monitoring body, which is the one we have here with a trigger mechanism not like the convention on torture, that is that if you get to a certain number of countries ratifying you have 6 more experts to deal with these issues. It is still extremely complex the issue of disability. They’re still having to deal with this. I know for a fact that many of the people who are working in the secretariat have problems with accessibility. The United Nations is not the bureaucratic entity many people think it is. I was talking to a person who is disabled in the secretariat. Normally when a person is disabled in a wheelchair she needs someone to help her so there are a range of things. Why the change from the medical model to the human rights based model? I think that it became a human rights based issue because you had the capability of looking into legislation that was enacted for persons with disability, which violated their human rights, their political and civil rights, many were impeded from voting, were not accepted as candidates. There were limitations on travel. You could not travel from one site to another if you had a mental disease as it was called. You had a whole range of issues here. You couldn’t get married. There are two distinctions, the persons who have visible disability or who are in wheelchairs because they were either born with this or they acquired it or because of ageing. These people intellectually may be functioning adequately in a society. The ones that are extremely challenging are intellectual disabilities. That is why the definition of the convention is so (inaudible) because you had disability that was permanent and that was temporary. Is a person who is depressed disabled? Interviewer: Or a person who has hurt their back?

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Subject: So when you have these issues, I was reading a story in the Financial Times this weekend. There was a story on the consequences of the Iraqi war and the Afghan War. One of the comments was that after these two wars there are half a million Americans who have returned with depression or posttraumatic syndrome and they are incapable of making their livelihoods. You have the same in Australia because you sent soldiers. This is part of what you are normally dealing with. I have to make a distinction. It didn’t change because of the United Nations. It changed because of civil society. If the leaders of disability society have not taken it upon themselves to move this, I don’t think you would have had the convention, I don’t think you would have had the change that occurred in the world during and after the convention. During and after the convention you had a disability society that joined together. I used to meet them every lunch and would have sandwiches with all civil society, with all major NGOs. There were so many that we had to ask them to form a caucus, so I would meet with the caucus because there were no rooms for 200, but I think that’s an issue and of course that’s where the battle cry of “nothing about us without us” came into play, as of the nature, the reasoning that those who understand disability are disabled. Now I agree with that because I’m a diplomat, I’m a facilitator, what I try to do is put 1 and 2 together and rationalize to them that there’s a consensus. I’m not a specialist on disability. I don’t pretend to be and I don’t think that after 12 years or 13 years of doing I am. What I can express is the nature of how you can use the system in a negotiating pattern for the issue. So what we did was get disabled people to explain to those diplomats what you were talking about when you were talking about accessibility. Not only accessibility in the physical sense, accessibility in information technology. That’s why we founded G3ICT, that’s why I’m a member of the board of the universal design commission. I’m a member of the board of the special Olympics and so on. So you have to see that by the year 2002 when this resolution was adopted by the Commission to the year 2006 when the General Assembly approved the convention, you only have 4 years. And that in the life of the UN is very short. When the secretariat told me it would take between 12-15 years, I thought I won’t be here. In that sense, the real issue at hand is the Convention as an objective was obtained. You had this as a very successful convention because there were a huge number of countries that had ratified, a number of countries that had signed and ratified. So clearly it jumped. More than any other convention in United Nations History it was done rapidly, it was the first human rights treaty of this century, therefore it became part of the 10 treaty bodies of the United Nations. What did it do? It created this body of experts to monitor states and it has an optional protocol. The optional protocol as always has the best signees because it represents an evolution, a very drastic evolution, because then an individual could take his state or other states to the committee. All this is soft law. There is a basis of saying this is soft law. It has its importance, it can deal with this issue more than a criminal type of legislation. The evolution of that has been that many countries have adopted laws under the guidance of the CRPD. Many countries have enacted Commissions inside the country to monitor compliance with the convention. Ecuador is a textbook case of that. It became one of the principal actors in the realm. It actually has one of the most advanced programmes of disability in the world. Of course it has an element of disability that it didn’t have before 2000. I know a lot of people in Australia who have dealt with this, for example Michael Fox who was president of RI in Sydney. He was the one who designed the house with no steps in Sydney. And you had a number of New Zealanders and Australians who were involved in this issue. Andrew Bynes is a

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professor at the University of Sydney, he was one of my friends of the chair. I formed a group that is called the “friends of the chair” who were academics like Andrew Bynes and Michael Stain who became the persons, academics and theoreticians, who helped the chair in guiding the process. Interviewer: What academic disciplines did they tend to come from? Subject: Well they were basically lawyers, because you needed an expertise in disability law and they were very good lawyers who had been doing this, but from a theoretical point of view. Now, that theoretical point of view, as an anecdote, stands from the point of view of saying if a person has a disability, can he take the person who doesn’t give him employment or who discriminates against him to court and what will he get if he gets a positive decision. You have a lot of questions with that though. Interviewer: What countries did the majority of the experts come from? Were they European or American? Subject: Well for my part of the world, the Mexicans, the Ecuadorians, the Costa Ricans became the standard bearers of the issue. They were joined by others but fundamentally those three. From Europe, I would say that, you know the European Union has a model of negotiation that is very complicated because it’s a model in which the Europeans decide on positions and then go to negotiations and they have to lock into this and they can’t retract, so they are very difficult to negotiate with. Now that being said, the European Union and its coordinators, because they were going to meetings coordinated by Denmark, then by Ireland, by whoever, and you were going to meetings coordinated by whoever was on the list. They had different modalities so sometimes I thought, and I said this to them, it’s like they’re beginning again. Ireland goes to a meeting and says, what the other guy said we don’t agree so we’ve changed. It was complicated. Besides, in every negotiation there is a difference of patterns of reasoning. Patterns of reasoning mean that I come from a culture that is basically codified in law. I’m a catholic, I’m a lawyer, I deduce. Anglo-Saxons, Australians induce, so in the context of that, in the negotiations, it’s extremely interesting to see and important to know where this comes from, or how this guides his process of reasoning, because you can agree verbally, but not necessarily in written form. They come from different areas and when you read it they say I didn’t say this, you did say this but it’s interpreted as this and the other because there is a context that is different. Now that’s technical, this has no bearing on this, except that you have to know that in order to negotiate in the United Nations, but besides that you have to rationalize that you have to do it in a language that is universally understood. If you do it in English, only 12 countries speak English. Well you guys, the Americans, the British and then you get into the lower segments, the Canadians, well the anglo world. Then you have the Indians and the Pakistanis who are English speakers also, but the rest of the world doesn’t. So when you enter into a negotiation in English, the translation feed for the interpreters is English, French, Spanish, okay but the English is the one that is taken as the basis for Chinese and Russian. If you really end up speaking in Spanish, which is then translated into English and into Chinese or Russian, you might not end up with what was originally being said. Now those are technical issues. Let’s get back to the field where you are interested.

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Interviewer: Backtracking a little to the role of the European Union, you mentioned that Europe was opposed to the Convention originally. How did the EU as a block play a role? Subject: Well the EU accepted the resolution but had a major confrontation with Mexico constantly on what that mandate represented, because the EU stood in a position of saying we are still analyzing if we should have a convention. And then they began to block. They began to make things difficult. They would lock into the negotiations in ways that made it more difficult. That I think was overcome after we changed the model and we created a working group and I think we created a group under the Presidency of Don McKay who replaced me when I went to Australia. Don McKay he is a very brilliant New Zealand ambassador and he negotiated the end of the convention. Don McKay chaired this working group, which was integrated by governments and by civil society. That is not common in the United Nations, because in the United Nations it’s an intergovernmental process. I had to give out a (…) statement during the negotiations because I thoroughly believe that the NGO community, especially the NGO community with disabilities should be in the halls and integrated into the negotiations. Some countries did not believe that and especially the Arabs and the Africans, so we had to negotiate with then until the last moment. I chaired that statement, I submitted that statement to the plenary because I could have been challenged. But fundamentally it broke one of the rules, it accepted that civil society, that person with disabilities, the disability community, would be integrated into the negotiations and we asked also that countries bring in their delegations of persons with disabilities, but that is one of the factors. Another factor that I think is important in dealing with this is modern negotiations. There were some people in the back of the room who had their laptops with them who and would be sending out reports on what the discussions were about. This was not something that was accepted. The United Nations accepts that when you talk into the microphone that is the, the minutes are taken from that speech. Okay? As the minutes are taken, the secretariat takes that, it edits that and it publishes that. The summary of the meeting is done in all languages in three years or something. It costs a fortune. I’m not sure exactly how much, but somebody told me it must have cost $10,000 or something, I’m not sure. The aspect of what I’m saying is that internet, being used intelligently by civil society, you were communicating to your people in the capitals of countries and these people in the countries would be able to talk to the members of parliament or lobby the persons in parliament to lobby for change to the positions of their delegations. This is something that was unheard of because normally a delegation is a government executive delegation, and although you have parliamentary governments in your part of the world, this type of activism was not known because you would be instantly in the halls. Now it’s common practice. There’s a video feed of everything, that changes… Interviewer: It’s a completely different environment Subject: …and it’s completely different for diplomats to deal with cyber meetings because before they were shielded from whatever was said and what was done. Their capitals would know from eventual reports, but not from looking at them in real time in video. So I think that those two elements also helped to have a speedy negotiation.

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Interviewer: That’s interesting. I hadn’t thought of the internet as a factor in negotiations. You mentioned that the European Union and the US were blocking. Which states were strong supporters, was it Mexico or others? Subject: Yes Mexico and we were very strong supporters, but you get to the point of having this, in a negotiation, you have what is said on the floor of a negotiation in speeches and you also have outside meetings and those outside meetings you would confront. I think in many cases the notion that we would have a convention came after the working group met and we had regional meetings on the CRPD, which meant that we had meetings in every region. We had one in Latin America and Ecuador and we had one in Bangkok. The one in Bangkok actually produced a template of a convention and I adopted that template of a convention as the draft of what we would be negotiated, or what could be negotiated and that draft became the working document for the working group and then it evolved into what was the last project to be tabled as a document at the general assembly. Interviewer: What was the role of developing nations in this? Was there any involvement? Subject: Well there’s an article there about cooperation. The Europeans and the Americans thought that this was an article was the back door to getting their money, which was nonsense, but that’s how they think. It’s about money, it’s budget driven, which is sometimes an error. But I can tell you frankly that because 80 per cent of those who are disabled live in under-developed countries it becomes a very big problem of resources. I have friends in the developed world who go around in wheelchairs that climb stairs. They cost 30-40 thousand dollars each, while in the under-developed world there are countries that don’t even have sidewalks, and a wheelchair is useless in rural areas. So it depends on how you deal with it. My vision of this, and I repeat this often, is that you are born with a disability or you acquire it during your life though sickness, accidents, war, climate change, malnutrition or any factor that will take you to a disability, but certainly as you age you will be disabled so the calculation by the World Bank and the WHO that there are a billion people who are disabled is not to my liking. I mean it’s not an absolute. To my inclination there are much more, because as you age the ageing population that affecting our countries now, will take you to the level of saying your parent, your grandparents, you will be disabled one day. So the issue is not they who are disabled, the guy in the wheelchair over there, but we who are disabled. So that shift of perception is extremely important because I know that disability is not a sexy topic. It’s not something you talk about over cocktails. People fear disability, people are ignorant, for religious purposes for discrimination purposes of disabilities. So when you look at the convention per se it is a discrimination instrument. Interviewer: That is what I am interested in, how the shift came to anti-discrimination Subject: Well there’s a long history and there’s a lot of contributions from many scholars on this issue, because what you wanted fundamentally was to give this person, to integrate them into society and their contribution to make society whole, a holistic society. On the other hand you have this question of how to you integrate

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people with disability into the workplace, how do you accommodate, reasonable accommodation, how do you do this in a family setting and how do you educate people to do this. So if you are talking about a billion people that are disabled and I am giving you the reasoning that there are much more, three billion people of something that, whose households are affected. So when you calculate, you say that 40 per cent of people have someone in their family, someone in their household who is disabled or will be disabled potentially and must be prepared for this challenge. We must be prepared for this and reintegrate these people socially. (content not transcribed – not relevant) Do you know what is the major cause of death for people with disabilities? People with disabilities commit suicide. So from the medical model, which is a need. There are people who need doctors and nurses to treat them. The other issue is families caring for people with disabilities and the time and resources they devote to that. (content not transcribed – not relevant) Interviewer: It would be good to follow up on the experts you drew on. Were they all from the legal field or were they sociologists etc.… Subject: Well I think that there were because we had some people who came originally to explain what disability was to members of delegations, so we established panels in the first meeting and the second and the third meeting. We established panels of experts to guide us and tell us exactly what, and what we got was a huge range of options. At the beginning like anything else you had a civil society that was not unified, by the end you had a civil society that was and that was aided by experts in the legal fields and the social fields and so on, was even better than the government expressions because they were attuned to this issue and they were hard workers. I think that you had a negotiation in the halls of the UN. First of all there were no rooms for people with disability, so you had to improve access and ramps and so on because the buildings of the UN in New York were not built for disability. You had security concerns, and the security people were driven nuts because of what this entailed if you had a fire or so on. And you had ignorance, the guards didn’t know what a dog for a blind person does and they think the dog can’t come in. Interviewer: And I think that still happens Subject: It happened to me at the high level segment on disability in New York. They said to me no no, your friend’s dog can’t come in. I said it’s not my friend’s dog, it’s a guide dog. And I do think the way the convention worked was that for each issue you named a facilitator and this facilitator had the duty of consulting intersessionally until the meetings came up. Now that’s a very interesting phase because they would consult and many of the people involved in these negotiations would tell them one thing and the national delegations would come up with something else later. You know a negotiation is a complex process. Interviewer: Of course, and especially with the involvement of civil society.

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Subject: But I think they were a plus Interviewer: There is an academic field of disability studies. Were they consulted at all? Subject: I think they probably were. Because there were a wide range of people consulted. What we tried to do was have people with disabilities integrated into their national delegations, integrated as civil society within their national delegations. We have also seen that they were important aids to the negotiations both for governments and for NGOs. How do you say this in English, they were the “stakers”? Interviewer: The stakeholders? Subject: Yes they were the stakeholders, where you had everybody involved. But I think that the unified language that the disability activists came out the negotiations with, it very soon dissolved. All the quarrels they had about funding etc. One of the things we tried to tell them in New York [at an October 2013 meeting on disability inclusive development] was that they need to get disability into the post 2015 development goals. If you do not get that into the development goals, for the next 15 years you will have the same problem as in 2000. In 2000 this was not on the radar of the international community, nothing was said about disability. It should be integrated but there is no guarantee that it will be. Interviewer: Even with the Convention Subject: The convention is the start of a process rather than the end of a process. But what it has done is made it mandatory for the UN agencies to apply themselves. It has meant that countries have signed and ratified it and have therefore become motivated by that. It has meant that you have a sort of roadmap for countries that don’t have this and who do have this to complement their internal legislations, many of this has been adapted again, reformed and so on, in order to comply with the convention, and in order to make it more broad, because fundamentally the legal aspect of the convention is to get legislation to try to do that. You were asking a question about cooperation and I didn’t answer it fully. The developed world always thinks that when you’re asking a question about cooperation, you’re asking for resources, and one of the things that happens in disability is that yes you need resources but you also need technology and exchange of experiences. (content not transcribed – not relevant) When you have war like you do in Iraq or Afghanistan, the level of disability you have, when you have demining, mines bring casualties. Interviewer: A lot of the developments in disability policy came following the First World War Subject: You would see a lot of lame people, people who were disabled in the streets. I remember in Spain when I went there as a young diplomat you see people in the

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streets disabled because of the war. You go to Vietnam, you go to Cambodia, hundreds of thousands of people are disabled. And that creates a public consciousness that creates change. I think that is why there is a whole chapter on public awareness and the responsibility of states to promote this. You have an autistic child, a person who goes into a theatre with children with intellectual disabilities. That is why we work so hard on the Special Olympics, but we know of cases where they don’t accept them in restaurants with their parents because of fear Interviewer: There is still a lot of segregation Subject: There is a lot of segregation but as we begin to have more children with disabilities because women are working longer, you get to a problem. Interviewer: And with the ageing population Subject: The ageing population is a major concern to me because I think that your parents, your grandparents and yourselves will be disabled in some way. When I was young being disabled [wearing glasses] was something that you couldn’t be a military guy, you couldn’t fly a plane, you couldn’t do a lot of things. Now everybody uses glasses. You take away the glasses and I can’t see 5 meters ahead of me. Interviewer: It’s an example of the social model of disability really. Subject: Yes how you perceive this, how you do this is a perception. I’m working on cases of leprosy for discrimination. Leprosy is something that you have the medications, you have the capabilities of dealing with, but you do not have the capabilities of dealing with discrimination the product of people who have had leprosy. So simply it’s horrendous for society. Interviewer: It’s combating those social stigmas Subject: Yes but you’re a woman, you know discrimination against women. Children, indigenous and disability, those are the three main groups of persons discriminated against. You come from an equilibrated society, but in other parts of the world… (interview interrupted by next meeting)

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B2. Interview with Professor Ron McCallum Member of the Committee on the Rights of Persons with Disabilities from Australia, Former labour lawyer and legal academic at the University of Sydney, interview conducted in Geneva, 7 April 2014 Subject: You can record now, that’s fine. Look we have 143 or 144 countries that have ratified it. It’s the fastest ratified convention in the history of the UN. It shows that governments recognize that there’s a gap, recognize that something needs to be done for their citizens with disability. The CPRD, I think we would not have had the Australia’s Development for All under AusAID without the CRPD. Interviewer: It’s driven a lot of changes, for example in the European Union as well Subject: Well it’s also the first treaty that allows a suprastate like the EU to ratify, and the EU ratified it and the executive and the parliament in Brussels have had to deal with it. When I was chair we went to Brussels and spoke to the EU. That has a huge effect. Interviewer: How was that, working with the EU. Subject: Well they either ratified it or they didn’t. They eventually ratified it, the convention allowed them to ratify it. The question was then what sort of discrimination law are they responsible for and what parts are the separate states of the European Union responsible for. Interviewer: I think it varies a lot between different states. Subject: Well it varies a great deal, but I think as a committee the European Union will have to report to us and it will be interesting to see what it says its responsibilities are. When we are dialoguing with states in the European Union how much do we say, you’ve got to rely on European Union law, and that’s an interesting question, because so much of European Union stuff is in directives, and they’re almost like soft law so it’s very complicated. Interviewer: It seems implementation is the most complicated Subject: Well up until the beginning of the 20th century, disability was seen as something separate, it wasn’t going to happen to me. There were still notions that it was to do with the sins of the parents and most children didn’t survive. One of the huge turning points was World War I, when so many people were disabled and people realized it could have been them in the trenches, so you saw the development of the guide dog, you saw all sorts of things and legislation for disabled war veterans. Then you saw it with World War II, if you look at the development of the Americans with Disabilities Act in 1990, the Australian one in 1992 and the British one in 1995, much of the development was driven by veterans, by Vietnam veterans. Interviewer: I wasn’t aware of that

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Subject: Often it’s the people who get injured by war or by accident and who remember what it was like before they were injured who become some of the greatest advocates. The whole movement, the social movement, was spearheaded in Britain by people like Goldstein [Finkelstein?] who you’ve probably heard about. He’s a psychiatrist, South African born who suffered a car accident and became a paraplegic. It was a group of spinal cord injured people who were the pioneers of the social movement. Interviewer: I guess people who had experienced what is was like before being disabled Subject: Exactly, exactly. And Britain’s a case study of that. We people who are born disabled learn to accept it as toddlers, we’re not so much the crusaders. I mean obviously there are some exceptions, Theresia [Degener] is quite a crusader. I thought in 2007 when Bill Shorten took up disability he wasn’t going to get so far. To his credit, with the ratification of the CRPD it became so significant that no one jumped up and down when the Medicare tax was doubled. Interviewer: Let’s just hope it doesn’t lose its momentum Subject: Now you take something like Tony…what’s our Prime Minister’s name? Interviewer: Abbott Subject: His parental leave scheme, which I think is terrific, it should be based on salary. If you were to say that in public, that we think this is a great idea and we’re going to increase your Medicare levy, given the sexist state of Australia, people would be jumping up and down and people would be hitting the barricades. Australia’s still a very sexist country but nobody’s going to say anything about the disabled. Now the rubber will start hitting the road. One of the reasons for the National Disability Insurance Scheme was that money was being spent on disability and it was increasing faster than health and you know that health costs are unsustainable. Politicians have jumped on the NDIS because the theory is that if you get people organized, they’ll be able to work and that will add to the productivity. I’ve yet to see an increase in the employment of we persons with disability. In fact it’s gone down, it’s gone down. Interviewer: In fact some of the evidence in the US was that after the introduction of the Americans with Disabilities Act employment decreased. Do you think this happens because it’s a difficult employment environment or there’s more prejudice? Subject: Well no it’s a difficult employment environment and many of the jobs that many of my sisters and brothers with intellectual disabilities did have been taken away. Many young persons with disabilities were the photocopiers or the coffee makers. What we’ve run into is a situation where companies are driven by quarterly reports and stock exchanges. What every CEO wants to do, and I sit on a couple of boards and have to fight this, they want to cut down labour costs, their share price will go up. So you can do this by outsourcing and eliminating and the groups at the bottom, which tend to be persons with disabilities, not high up people like me I guess, tend to be casualties. That’s part of the problem.

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Of course we’re interested in doing everything cheap. We cut down on baggage handlers at airports, we cut down on people doing service jobs, and this really affects everyone. Interviewer: Is not a gain in the long run is it, if people are relying on welfare? Subject: The other problem with welfare is that we’ve used the Disability Support Pension, and I sit on appeals, to disguise unemployment. If you’re on a disability pension, you’re not counted as unemployed. So we have these hoards of men aged between 50 and 60 who’ve lost manufacturing jobs. They’re never going to retrain. Women are much more flexible, they’ll take up cleaning jobs if they have to, men are not going to do that, maybe they should, they’re not going to take up cleaning jobs, they’re not going to take up child minding jobs, and we don’t know what to do about it so we shove them on Disability Support Pension. We put them on Newstart and they have to look for jobs and we know there are no jobs for 55 year olds who’ve just been in manufacturing. So it’s really very complex. I’m a great supporter of the NDIS. I’m less worried about productivity and more worried about giving people a better life. If people think that it’s going to save us on productivity, it’s only going to save us if we run programmes to get people with disabilities into work. So we’re in for a lot of seesawing in the next 5 to 10 years. Interviewer: I guess you always have to justify something by looking at an economic benefit. Subject: Everything runs on economics and finance is everything. It isn’t but people perceive it to be, unless it’s expenditure on the military we don’t dare to say it’s going to be too financially costly. The European Union’s a case study and Australia’s another interesting case study that you know about, that you’ve worked in. And you can see this in various other countries. Britian’s another interesting case study as they’ve been cutting welfare payments, what they call their ‘swingeing’, I don’t really understand that word, and we’ve seen that around Europe as the economy drops. Britain’s an easy example because they speak English. Interviewer: Do you think an instrument like the CRPD helps to address those issues that are down on a national level? Subject: I think the CRPD makes people more aware but it can’t do everything. Budgetary cycles take over and the short term effects of the three year election cycles in this country. There’s no going back. What you see the current government doing, they’ll delay the roll out and they’ll narrow some of the benefits and I’ll tell you what, I think a Labor government would have done the same thing. I mean she’s a friend Julia [Gillard], but remember when she said the women whose children turned 8 had to go back onto Newstart, that was unbelievably drastic. Interviewer: I guess that’s similar to what’s happening in many countries around Europe.

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Subject: It’s a real problem (extract not transcribed – not relevant) Interviewer: The expertise consulted by the CRPD committee, is that predominantly legal? Subject: Yes you’ll see the reading of article 12 tomorrow. We got a lot of submissions from Disabled People’s Orgnaisations, they got their legal people involved, and from governments. You see a lot of disabled persons organizations going into law. In Australia you had that supported wage, which was challenged, quite rightly, and people didn’t expect that sort of legal maneuver. We’ll see more and more of that like in the United States and the same with the European Court. Women have used the courts for equality, racial groups have used that route and I think you’ll see more and more of that sort of thing. We’d better get going soon… (interview suspended)

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B3. Interview with Diane Mulligan Member of the UN Committee on the Convention of the Rights of Persons with Disabilities from Great Britain, Working for CBM International in Disability and International Development, interview conducted in Geneva, 8 April 2014 Interviewer: If I could start by asking how you came to be involved in the committee? Subject: Okay, I started out working on human rights issues and my first taste was around environmental rights and then women’s rights and then indigenous rights, and then I worked for a development agency that brings volunteers to developing countries, VSO, I don’t know if you’ve heard of them, they’re a British organization that’s been around since the second world war. The program that I was involved in was in Indonesia, a big disability rights program between Indonesia and Thailand that involved bringing about 70 volunteers over 5 years. So the main focus of that work was building a national network of DPOs across Indonesia and that happened in the time that I was there. And I’ve been a lifelong mental health service user and I worked with DPOs and explained my background, but they never really took my mental health condition seriously because I’m high functioning and in an executive position and don’t show any obvious sign of being mentally distressed because I’m controlled in my medications. It was during that time that I had a motor bike accident and had my leg amputated and realized quite quickly that I couldn’t stay in Indonesia because there are no prosthetics and orthotics service in the country and this is one of the areas of work that VSO was working on was community based rehabilitation. But they have one training school for prosthetics and orthotics in a country of 120 million people so I realized there was no way I was going to get the sort of prosthesis I needed to continue so I returned to the UK and realized that my physical impairment was a really great way to open the door on disability advocacy, to get mental health higher up on the agenda because I was seen as one of the club, because before I wasn’t accepted at all as a person with disability working in disability advocacy because mental health was not…in a country like Indonesia you’re either in an asylum or you’re shackled and left at home and so people like me are just not in the community or working, Interviewer: And that’s a large group of people. Subject: It’s a huge number of people. And it’s one of the few places where shackling is happening in psychiatric institutions regularly across the country. And a lot of people with disabilities who we were advocating for and working with, some of our rehabilitation staff and therapists would find these young children who had been shackled in a hut while their parents went out to work because they weren’t safe to leave them in case they wandered off. So there were lots of people being treated really badly and who were completely invisible and hard to find. Interviewer: Have you observed changes in the field of disability policy, through the negotiation of the convention or before that? Subject: Well the negotiation of the convention was taking place while I was in Indonesia, so I was far removed from the theory of what was happening in New York.

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I was on the rock face, and also my own amputation I was dealing with. So when I returned to the UK and became part of an advisory group to government on disability rights. We had a Labour government at that point so they were really interested in the voice and participation of persons with disability in policy. There were a group of us, over 20, all persons with disability, there were people with learning difficulties, all range of impairments, men, women, lesbians, all mixture of intersectional groups of persons with disabilities. And that eventually became a small panel of people that the government could call on to get advice on persons with disability. I also became a member of the National Human Rights Institution’s specific Committee on Disability Rights, so they had a committee that informed the whole National Human Rights Institution on all of their protected areas, cross cutting disability, if they were working on ageing issues we would given them the disability angle on ageing etc. The reason they did that was because originally there was a number of different bodies that regulated government activity around. (extract not transcribed – not relevant) During that time I worked for sight savers, an NGO that worked with saving sight and also working with all those people whose sight couldn’t be saved (…) And then I switched to another NGO called CBM, who I currently work for and I work in a department advocating for disability rights, mainly in developing countries. Interviewer: I know there are massive inequalities between the developed and the developing world. Is that a major challenge for the convention? Subject: I think there are many challenges. I think Article 32 is not well understood, international cooperation. I think many people see it in terms of bilateral donor relations, you give some money to a poor country and maybe some people with disability are included in programmes. But actually it’s so much wider than that in terms of really south-south cooperation or technology transfer or National Human Rights Institutions Working together, all manner of different ways to cooperate. So a lot of my work in my charity at the moment is how to influence the post 2015 development agenda, how to get disability rights mainstreamed. I’ve been working on that for 3 or 4 years now. In terms of the Committee we ran an open selection a few years back and I applied along with other folk to run for the election and now as the UK member of the committee I have to remain completely independent from the UK. So I’m aware of everything that’s happening in the UK but if we have a petition or an inquiry that’s going to happen here and in terms of the list of issues that will be discussed next session in September, I can’t be any part of that. In terms of my advisory committees I have stepped back from all of that. I have plenty of friends and allies who still do that and there’s been a change of government and now that we have a Coalition there’s been a shift away from all of the rights that we were…we’d established a lot of rights and a lot of quite good welfare policies that established the rights of people to live independently as part of the community, that kind of thing, which have been eroded away through the Coalition government’s austerity measures. And they’ve just been cut and cut and cut and I think now persons with disabilities in the UK face their most challenging time that they’ve ever faced. Subject: In a lot of countries you are looking at welfare benefits being cut back, which seems at odds with countries ratifying the convention.

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Subject: The two are very difficult. There are…addressing disability rights well is costly, if we’re going to do it well it is going to cost some extra money, but the long term gains, if you look at the cost benefit analysis for every investment of a dollar you are going to get at least double that back from the well functioning participation of people with disability in the workforce, in political participation, across the board, the benefits are huge, starting right from inclusive education so I’m the country rapporteur for Germany and seeing what’s happening in Germany, it hasn’t been progressive at all in terms of inclusive education. 85 per cent of children are in special schools, so then you are getting a workforce a labour market where there is hardly any exposure to persons with disability, lots of persons with disabilities end up working in sheltered employment and then the government is criticized for not having many persons with disabilities in the labour market, but it started when they were children and they’ve been segregated. So it’s almost an apartheid in that country and then of course you’re not seeing people with disability at work, at school your peers are not persons with disabilities, so then you have a society that’s segregated and the only options as an adult are to be living in an institution and not as part of the community because it’s cheaper for the government. And to be honest if you’ve gone though segregated schooling, you’ve worked in a segregated sector you’re not going to feel confident living in the big wide world either. So if someone says we can keep you living alongside other people, you’ve lived you whole life like this, it’s really easy, otherwise you are going to have to jump through a hundred hoops. It’s not easy and a lot of people in the UK have never heard of the Convention and the understanding of the convention, the implementation at the grass roots level is the responsibility of national governments to get their populations understanding. It’s part of their, as duty bearers to ensure their citizens are aware of what rights they have. But of course once citizens are aware of their rights they are demanding their rights and actually if governments don’t feel they are in a position to fulfill them or actually it’s regressing on disability rights because of austerity measures it’s a mess. (Extract not transcribed – Not relevant) The Convention is an excellent framework in which to place a lot of our policies. So when I am writing my main policy stuff, which is for influence at the UN level I am able to speak their language but I am able to bring really nice rich case studies from the ground roots… (end of interview)

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B4. Interview with Stig Langvad Member of the Committee on the Convention on the Rights of Persons with Disabilities from Denmark, Chair of Disabled Peoples’ Organisations Denmark and Executive Member of the European Disability Forum, conducted by skype, 12 April 2014 Interviewer: What changes have you observed in disability policy in the time that you have worked in the field? Subject: I think that the changes that you have seen, especially in the Nordic countries, in Scandinavia, is that the approach to persons with disabilities, I don’t know how to say this but there are several changes that you can discover. First of all you can discover the changes from the more medical model to the human rights model, you can see or listen to the difference between the charity approach towards the human rights approach, but you can also see changes right…at the moment it seems that we have been over the hill, I mean for many years we have had improvements. The last few years we have discovered that the willingness, the political willingness, to support the disability perspective, or disability politics is declining. On one hand you have the perspective of human rights as also covering persons with disabilities, but on the other hand you have less political willingness to pay for the content of the disability politics and that is actually quite a problem. Interviewer: Do you think that that’s for economic reasons? Subject: It’s sometimes difficult to really understand what is the philosophy behind the cuts, but it is, or course it has something to do with economic possibilities within our societies, but you cannot see this as only something that is about political willingness to pay for the disability politics because there is also something about the attitude or the support or whatever. I find that when you talk to politicians in Scandinavian countries, in European countries, it is often so that they talk on one level and are supportive, but when it comes to concrete implementation and perhaps allocation of resources, then there is a difference. But when we’re talking about the development in relation to the perception of disability, I also see that there are some persons who are very human rights oriented and you have at the same time someone who is very scared of the human rights perspective because they think that they don’t want to have possibilities created through the struggle that often follows the changes from the changes from the medical/social model to the human rights based model. Interviewer: Do you mean the changes in terms of they’re afraid of having to spend more money on disability? Subject: They’re afraid that the battle will be too tough, that they will lose the support that they have. Defining themselves as persons with disabilities they are in a way putting themselves in a box where they are more marginalized. And then you have those that think that human rights are the political and you have those that think that human rights is a fundamental right that you can easily bring to

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court. So you have a lot of mixed approaches, attitudes, reasons for the development as you see it now. Interviewer: That’s very interesting because most people seem to be very positive about human rights, but there seem to be some examples, like you say, most European countries despite signing up to the convention are actually cutting benefits for people with disabilities… Subject: Yes. Well it’s quite difficult to get governments in European countries to go in and say we will prioritise and reduce the gap that persons with disabilities are experiencing. Interviewer: Why do you think that is? Is it a matter of discrimination? Subject: I don’t think that people do discriminate by intent, not many, but I don’t think they really understand the differences in possibilities between persons with and without disabilities. I don’t think that they can see how they always calculate the worst case scenario, I mean if they talk about having a disability in the existing environment and look upon it from the perspective of a person in a wheelchair they calculate how much does it cost to change all houses, all shops, all workplaces, all transport remedies, all this, then they come up with some very high numbers, billions of US dollars, and then they get afraid, instead of having a realistic approach, which can be implemented to a sum of money that is much smaller and which can be extended to several years. So a specific plan of action is probably easier to get through but not easier to communicate, and therefore the approach is often very antagonistic towards each other or it becomes more antagonistic. It becomes a tougher battle between persons representing persons with disability and politicians representing the citizens of one regional level or local level or international level. Subject: So there are many there that are afraid that if they claim the optimal conditions then it becomes so expensive that others cannot see how to solve the problem and others that are supposed to solve the problem they are afraid of everything because they calculate all the expenditures that are to be done within the next year and then it becomes so expensive that they simply don’t want to go down that road. Then of course you have the financial crisis which does put quite a burden on the shoulders of the more modern welfare societies because they are, it’s not possible to raise the taxes, especially not in Nordic countries and even if it were, the politicians want to reduce the taxes paid by the citizens of the Nordic countries. So you have a lot of pros and cons. Interviewer: Do you think it has become easier to push for change since the convention? Subject: I think it’s a little bit difficult to say, because you can never say, what would you have if you had not had the convention, but some areas have been changed because of the convention but not much. We have had some changes in relation to the right to vote in some countries. We have seen more focus on certain areas especially within the European Union based on the concept of the UNCRPD, but basically today I would say that you have not seen the convention become that vehicle for change that is needed, but it has definitely been part of that to put disability on the agenda, so you

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are getting the words in the right places so you are ready to move as soon as the political environment is changing. Interviewer: I’m interested as well in the role the European Union has played. I know you’re involved in the European Disability Forum. I was wondering how you see the European wide disability movement. Subject: When we talk about the European Union we have to distinguish between three different ways or different areas where the European Union can have influence. You have areas where the European Union has the competence to come up with changes in regulations because it is European competence and then you have what you call shared competence, areas of shared competence where the Union and the member states have overlapping authority and then you have national based legislation or regulation where the member state has control. So you have this mix between European competence, shared competence and national competence, and when we look upon the European Union and we look upon it from the last almost 20 years, we have seen that the EU, because of the non-discrimination perspective has made some significant changes to the benefit of persons with disability, especially in the area of mobility. Trains crossing national borders, city buses, aviation and during the last years we have seen some improvement in relation to standardization and to certain areas that were supposed to be only national competence, but in a way the European Union can put things on the agenda so that the member states have to do something, or have to engage themselves in the work, trying to obtain goals that are to the benefits of persons with disabilities. But I think that from my chair I see that the EU is actually doing quite a lot on incorporating the disability perspective, but when we are deciding even on European competence areas, you will see that it is the Commission, the parliament and the governments of the member states that are deciding so it is difficult to get something to happen at the European level without having the support of at least two thirds of the member states. So it is difficult to get the necessary support, but it is easier at the European level than at the national level at the moment. Interviewer: That’s interesting, because I know the EU published a lot of information on disability, but I guess national governments are very worried about money, but the EU is as well… Subject: But when you see the European Union taking the lead they are always limited by their, by the approach taken by, they are always limited by the national attitudes, so the European Union can take initiative, but it can be blocked for instance if Italy and Germany does not agree. Interviewer: And what about the role of the European Disability Forum in the European Context? Subject: It’s quite good. Interviewer: I know they’ve been an important lobby group in Europe for along time now Subject: They’ve been around for about 20 years

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Interviewer: And how did you become involved with EDF? Subject: Because I’m the chairperson of the Danish Organisation of persons with disabilities. Interviewer: Do you think that that voice within Europe makes a difference in terms of the EU’s engagement in this area? Subject: They are definitely making quite a significant difference , because without them there would not have been any united European voice speaking on behalf of persons with disabilities across all 28 countries. Subject: Today I see some difficulties because the EDF was created when we had 15 member states within the European Union and now we are 28, and the last 13 organizations that have been collected within EDF, those countries, the new countries, they don’t have the same and long traditions on exchanging information regarding the area, does not have any modern knowledge in terms persons with disabilities, they do not have a modern attitude towards persons with disabilities. So we are having 15 countries than in a way were newborn and then in the last 10 years you have had approximately the same number of countries where, the first 15 countries have had very high levels of exchange of information, exchange of experience, exchange of good examples etc. but the last 13 countries who are now members of the European Union have not experienced the same awareness raising regarding persons with disabilities, so they are mentally, politically, attitudinally on a completely different planet. Interviewer: So that creates a challenge Subject: It does really create a challenge within the European Union. It’s not easy to fight for disability politics at the European level because it is very complex so that is creating a lot of challenges, and even, and then, if you did not have EDF at the European level you would be very, then you would be in a very bad position because then you would not have anyone speaking on behalf of organizations of persons with disabilities within the member states. Interviewer: Is there a lot of representation from DPOs from the newer member states within EDF as well? I don’t understand Interviewer: I meant are the organizations of people with disabilities from the newer member states, are they active within EDF as well? Subject: We have European organizations representing persons with specific impairments across Europe and we have national umbrella organizations representing the organizational set-up within the area of disability within each country, and the newcomers are also members of EDF and they are often present at all meetings, or they are present at all meetings, but they are having difficulties in transforming the disability politics experienced in their own country. It’s difficult for them to have the

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European politics to respond to the challenges they have and it’s more about having our policy from the Nordic countries to be reproduced than it is to have a general raise on the political focus on disability in the old eastern countries. Interviewer: I don’t want to take up too much of your time, but if I could just ask, what do you see at the biggest challenges in European disability policy? Subject: I think that the most relevant issue is actually to create a new mutual understanding of what disability is, who is affected by the lack of looking after the needs of persons with disabilities, because if you do not have the right attitude you can stand and scream for getting your rights and still be one of the most marginalized groups in the world. So it is not just about having rules and expenditures etc. etc. it is also about having the understanding of what kind of needs that the diverse group of persons with different kinds of impairments have and how to solve it. If you do not have the right attitude you will never be able to obtain your human rights even if they are written into a convention, then the battle will be too tough so I think that awareness raising is still very important and I think it is much more important when you have a diverse geographical collaboration like you have in EDF and like you have in the European Union, I mean we have very poor countries and we have what I would call quite rich countries. You have countries with a high percentage of employment and countries with a small percentage of employment so the countries are very diverse and the persons with disabilities are very diverse and with this you have to find some political targets that you want to reach. Interviewer: It’s hard with such a diverse and different group Subject: So if you live in Australia, you have, of course you have differences between persons with disabilities and you have different provinces but the difference is much less than it is between the richest country of the European Union and the poorest country and there are extreme differences from Denmark, Sweden, Norway, Finland, Belgium, Holland and then all the way down until you reach the southern parts of Italy, Spain, Greece… Interviewer: And the new members like Romania and Bulgaria… Subject: Yes (extract not transcribed – not relevant) Subject: Just to give you an example of what EDF has been doing, EDF was very hard in fighting for the buses and coaches directive that made all buses accessible in city environments, and now it means that you don’t buy buses that are not accessible, and in Denmark you now have something 100 per cent of buses that are accessible, so you have reached a change in the way buying buses, you have changed that within 10 years and now you have changed the fleet of city buses within 10 years so now you are always able to go out and find a bus that you can get into and out of even if you are using a wheelchair. Interviewer: Well that’s a great example of change

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Subject: But the attitude is still not there because the driver of the bus is still not able to assist in putting out the ramp, so you have a bus that is accessible but not automatically accessible because you have to put out the ramp manually. The driver is not allowed to assist you. So this is…the European Union and EDF could make the rules for creating accessible buses in city environment, but they could not change the attitude so it is also allowed for the driver to get down from his or her seat and assist the person in a wheelchair in getting on board. Interviewer: So there are still barriers there Subject: That is mentally, so if you take the same in relation to civil aviation, then you can get the assistance to get into the flight and get into the aircraft, and you will have assistance all the way and you will have a guarantee, almost a guarantee that your mobility equipment is also taken on board, so there you can have assistance, but in the buses you do not have anyone to assist you getting into the bus, so if you do not have an independent living scheme or accompanying person according to the legislation, then you will never be able to utilize the benefits or the new possibilities that are created. I find that there are still so many contradictions when you talk about disability politics that it’s not easy to see where to start and where to end and we’re definitely not there. (conclusion of interview)      

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B5. Interview with Laszlo Gabor Lovaszy Member of the CRPD Committee from Hungary and Adviser to Ádám Kósa, member of the European Parliament, this interview was not conducted in person as the subject, who is a deaf person and sign language user, expressed a preference for responding to questions by email, response received 23 April 2014 Question: What changes have you observed in disability policy during the time you have been involved?

Response: I think, since the UNCRPD is a relatively young international body and legal measure, for the time being there is no established practice and clear interpretation of the Convention (see the number of General Comments, for example) and most State parties that ratified it so far have not been observed and engaged in constructive dialogues. Perhaps GC on Article 12 can be considered a new and important momentum; however, the Committee is in a very fragile situation due to the fact that the Convention has to be and will have to be interpreted continuously for further understanding and better application. And this process can ignite further conflicts between the Committee and State parties or even among the Committee and DPOs because we already have a very promising and courageously adopted text but at the same time we cannot overstep the laid lines. After having got the UNCRPD, I expect that further discussions and questions will have to be dealt with more professional and well-based approaches adapted to the reality (for the interests as well as for developing further legal safeguards of the disabled people) based on the adopted text at hand.

Question: Why do you think a human rights framework came to the forefront when it did? Response: In my opinion this phenomenon has been evolving since the Second World War (and this indeed relates to the horror of Holocaust and genocides of “the weak”, the disabled people in particular (in Hartheim, for example)) and started with the acknowledgment of efforts made for the interest as well as the integration of the blind at the UN in the 50s within the framework of the strengthened activity of the Social Committee of the UN. From 1953 relevant articles about integration of the disabled were published in the International Social Service Review (UN). On the other hand, the European Social Fund was set up in 1957 as the first European fund and was for the unemployed (and not exclusively for disabled people). The first important and social-related regulation was only adopted in 1971 (1408/71/EEC) trying to coordinate the different European social systems and services and paid little attention to disabled people. However, this regulation referred to disabled people in the EU legislation first time. In addition, we have to bear in mind that the socialist regimes outside the European Community wanted to hide the disabled and prevent their participation in society. These regimes mainly focused on medical approaches and solutions. Even a kind of perfect, healthy and loyal as well as “same and fit” and “socialist man” as an idea was found out and formulated for the “interest of the productive society”. Moreover, as we know, the socialist block did not support conventions on political and human rights. Apart from the fact that the important DPOs were involved when drafting the UNCRPD in mid 2000s, in the 80s the Delors’s European Commission introduced the so-called social dialogue of Val-

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Duchesse in which the Commission acknowledge its special role in social dialogues. This approach was in fact supported by the notion that the Court of the European Union established in the case Defrenne II (point 10). In this decision the Court stated that apart from the aspect of economy, the social aspects and aims should also be respected at European level. The first breakthrough happened in 1992 when the UN Assembly adopted the international day of the persons with disabilities and the so-called Standard rules one year later in 1993 – just after the European communist regimes fell. The next breakthrough was the Maastrich Treaty, and based on it the new general employment framework directive 2000/78/EC and Charter of Fundamental Rights of the EU in 2000, but these are another and newer stories.

Question: What role does the European Union play in the field of disability rights? Response: To be honest, apart from the Charter of Fundamental Rights and a new disability strategy for 2010-2020, I am not sure the EU plays a remarkable role in the field of disability rights in terms of the UNCRPD; however, we can see very active MEPs and NGOs in this field who launched different initiatives or pilot projects. I think that the EU itself has not recognised its entirely new role as the first regional organisation joined the UNCRPD and perhaps it has not understood fully the obligations stemming from the UNCRPD. I reckon that the fact that there are about 100 directors in the European Commission and no one is uniquely responsible for disability affairs makes any progress a bit more difficult. In fact it requires changing the Commission’s inner mechanism and the methodology of reviewing its procedures to meet the requirements of the Convention. Since there are shared and mixed competencies, especially in the field of anti-discrimination, I am afraid, we have to prepare ourselves to face serious confusions and debates in the future in terms of the implementation of the UNCRPD at EU level. Good news that as of 2014 no EU co-financed project can be implemented and financially accepted by the EU in which the disability-related needs are neglected based on the new cohesion policy in which accessibility has been firmly strengthened (visit Ádám KÓSA MEP cohesion policy related press communications).

Question: What expertise guides European policy makers? – in terms of academic experts, civil society representatives etc.? Response: In the new Cohesion Policy package, there are concrete references to CRPD Committee at the so-called ex ante conditionality (section Disability, p. 455) and I do hope that this legal innovation will help implement the UNCRPD at MS’ level, too. Visit: http://eur-lex.europa.eu/legal-content/EN/TXT/?uri=CELEX:32013R1303

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B6. Interview with a Human Rights Officer at the European Disability Forum Interviewee was a young Belgian woman, conducted by skype 24 April 2014 Interviewer: I’m interested about the role that EDF has historically and in the modern environment? How does EDF work to lobby the EU? Subject: With regards to the implementation of the UN CRPD? Interviewer: Yes and also European disability policy more broadly Subject: This is an extremely broad topic, but I can tell you a little bit about EDF and a little bit more about my work. So what we’ve been doing, EDF has been here since 96, gradually we’ve been lobbying to be involved in all decision making processes at the EU level and very concretely we take part in different working groups that concern disability rights. There is the European High Level group, that is basically a collection of member state representatives working on disability and for example EDF is part of that, just as an observer, but we can comment on the work they are doing. That’s one part of it. For example there is also a disability intergroup in the European Commission and the European Parliament of either Commission representatives or parliamentarians that are either working in disability rights or are interested in disability rights. And on the disability intergroup at the European Parliament level EDF holds the secretariat, so we convene the meetings, we discuss the topics of the meetings together with the MEP, so we try to influence there the work of the Parliament. So basically we work on the three different levels: you have the Commission, the Parliament and the Council. The Council is more closed, it’s harder to lobby there because we are not systematically invited into the meetings related to disability and we’re trying to aim for that, we are really requesting this but it’s harder, whereas with the Commission they have more of a policy to involve civil society in legislative process and legislation… (inaudible) …in the Parliament we have someone working specifically on the Parliament so he goes there, meets the MEP, tries to convince them to consider disability as part of the different legislative proposals. So that’s broadly how we operate. Is that clear? Interviewer: How long have you been with EDF? Have you seen many changes in the time you’ve been there? Subject: I’ve been only there a year and a half. I cannot tell you about 10 years ago, but I think it’s only increased, but I can tell you that we have to work hard for it and it’s not perfect at all, but at the same time I think you can see that our area is one the areas most consulted for civil society because of the CRPD and the ratification of the EU of course. They have a little bit more obligation towards consulting us than other groups. I think we have a bit of an advantage there. Interviewer: I am also interested in the academic expertise used by EDF and by policy makers, the research that goes on…

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Subject: I don’t work specifically on this topic, I have colleague so I could transfer you to him, but I can tell you we work closely Professor Lisa Waddington, she is working on disability at the University of Maastricht, so whenever we are after academic expertise we can contact her on different files. Then I know that EDF, and my colleague more specifically is in this DISCIT working group at EU level, but I don’t have much details on it, but I know that we are involved seeing what the next priorities of the EU could towards research on disability. And then of course we participate and we present our points of view at many academic seminars. We are invited to participate in research being done by different universities. They might say, we are doing research on this can you bring the perspective of disabilities or can you put us in contact with national members who know the situation in this or this EU member state, so we do all of that. Interviewer: Is it mostly legal expertise? Subject: It can be anything. It can be legal expertise but of course it most expertise that we can bring is the lived experience of people with disabilities or the really practical examples of how certain problems can be solved. I think that’s really where our added value is, to know if any new legislative proposal or policy might actually work in practice, to compare it to the lived experiences and the realities of people with disabilities and see if it will actually work in practice. Interviewer: I imagine it’s quite challenging as well because the nations that are represented are really quite diverse in terms of policy. Is that a challenge now Europe has expanded? Subject: Of course the situation is very different in the EU member states, mmmm, let’s see, of course it’s not so easy to be aware of everything that’s happening, that’s one thing. At the same time, when you are aware of the different practices in different EU states it’s also nice to compare them so to improve the situations in certain member states where they have difficulties on a certain topic and showing them the examples of other member states. So that’s also an advantage from EDF, to say look this member state is going well so you might be able to get in contact with them. So this diversity might also be an asset. Interviewer: Do you know about the role that EDF played in the negotiations of the convention back when that was happening? Subject: I know that EDF was really involved, because EDF is an active member of the International Disability Alliance. They were both, if I understand it, participating in this International Disability Caucus in this ad-hoc working group at UN level that drafted the convention, so we’ve been really active in that absolutely. At EU level what I want to share with you on your first question or you second question, on the evolution, with the implementation of the CRPD (extract not transcribed - technical problems) …with regards to the monitoring framework at the EU level, um, EDF has really actively lobbied to be part of the framework and so we are members now of the

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framework, kind of as the direct involvement of representative organisations in the monitoring body. So that’s also a point that I wanted to tell you about. Interviewer: I know the EU plays a role in terms of disability and development assistance. Does EDF have any involvement in that? Subject: Yes we’ve really been very active on the post 2015 framework, on the MDGs, Millennium Development Goals, together with the International Disability Alliance. Also we’ve been lobbying at EU level for the position of the position of the European External Services, again it’s another colleague of mine who has been doing this, so I don’t know exactly but I know that we’ve been lobbying a lot to include the disability perspective. Interviewer: What do you see as the big challenges at the moment in terms of disability policy? Subject: I think the first issue that comes up to mind it there will really be a challenge to mainstream disability in all the activities of the Commission, the Parliament and the Council, that today we still see that disability stays within a certain unit. It’s difficult to have everyone involved, maybe the areas that don’t necessarily think about disability in their work, consumer policy for example, so we really will have to see in the next years what the European Union puts in place to implement the convention at different levels, so that will be a challenge to achieve. Interviewer: But there have already been changes at the level of member states who ratified the convention? Subject: Yes absolutely, I mean it’s going slowly of course and I think a lot of member states didn’t really realize what they were signing up to. You can see that with the legal reforms around legal capacity, article 12 of the Convention. Some member states have made good steps forward and others have made some legal reform but only changing it a little bit in the right direction, but a lot of things are happening and a lot of debates are going on and discussions. I think it’s good, but at the same time again there’s still a lot of raising awareness that needs to be done at different administrations, because some people are not even aware of what’s a convention, let alone people with disabilities, maybe they’ve heard of the convention but they don’t really understand what it entails to them, what rights it brings to them and how they can effectively remedy if there have been violations of their rights. Interviewer: Awareness raising is really important isn’t it? Subject: And the mindset really needs to be changed, I mean it’s going a little, but there is still a lot of work to do. I think that’s the first thing that we need to do. I mean we can do something at the EU level, but I think it’s mainly the task of more the national level and local levels, the regional and local levels, to maybe reach out to people with disabilities and tell them about the Convention and maybe raise awareness about their rights. (conclusion of interview)