Sub theme 2: Theorising from practice and building knowledge

Communicating disability through networking-

Dr V.Janaki, Chennai drvj70@gmail.com

‘Alone we can very little, together we can do so much…’ said Helen Keller, one of the most iconic influencers of the disability movement. This is especially true when it comes to the issue of disability, people with disabilities, inclusion and access issues,education, employment… the whole gamut of life spaces in today’s changing world.

Disability is a complex, interconnected, biomedical, social and environmental phenomenon, interrelated by a web of issues that transcends the personal lives of individuals. Just as one says, the whole is the sum of its parts, disability too is a compartmentalized fact of life. It is a term that is variously understood/perceived as: handicap, disorder, problem, liability, to be helped, to overcome; these are some commonly used/ associated words when people discuss disability. The person is never the focus, only the disability. This is reinforced in personal interactions at various points( attitudes, behavior, situations, different settings) mass media images, language, art and crafts and so on.

Towards inclusion, access..equity..

The productive utilization of all available human resources- the largely ignored, hitherto untapped potentialities of pwd’s- works on the premise, ’every individual is unique’. This has been the single motivating factor for the disability movement and the activists have all gelled well to prove a cohesive and formidable force to reckon with in terms of negotiating for their

human rights to dignity, self expression, right to movement and much more…

Inclusion is

• a philosophy built on the belief that all people are equal and should be respected and valued, as an issue of basic human rights.

• an "unending set of processes" in which children and adults with disabilities have the opportunity to participate fully in ALL community activities offered to people who do not have disabilities.

(UNESCO - at the UN-Committee on Rights of the Child, October 6, 1997 - Centre for Human Rights, Geneva)

The present scenario…

Disability, today, is much more than just a physical problem. The abilities, capacities of the person, irrespective of the disability- visual, hearing, locomotor, deafblindness, sensory-neural impairments, mental, intellectual, developmental and learning disorders, are all part of the affected person. Labelling a disabled person as someone who is incapable of decision making, who is not entitled to live a life on his or her own terms, or to make choices, or has the right to entitlements that every other individual has and more… is today unacceptable thanks to awareness campaigns and sensitization by organizations and other stake holders. They are barriers to the growth, acceptance and inclusion of the disabled person in mainstream society. Persons with disabilities are today synonymous with the huge, invisible and latent and untapped human resource, in terms of their abilities and potentialities. They are at the vanguard of great social innovations, breaking barriers, surmounting all odds at every stage in their march towards inclusion and access to every human activity on a daily

basis. Some of the greatest achievers in today’s technology driven landscape are persons with disabilities(pwd’s)- it’s all there in the news….a person climbed Mount Everest,(locomotor disability), a music composer(autism), lawyers, educationists…. More…all it takes is an open mind and heart… to be sensitive and sensible too….

Information technology, the great leveller and enabler in bridging the discrimination-equality divide, has marked the visibility of persons with disabilities, creating barrier free environments, forged partnerships and encouraged participation, inclusion and acceptance, change and development. Unity in Diversity, the axiom denoting India is reflective of understanding disability in the new millennium.

Technology has thus far proved to be a gamechanger in many ways, more so for persons with various disabilities. Breaking the so called socio-cultural-physical, environmental barriers, changing mindsets and attitudes through awareness and advocacy has been the raison d’etre of various activists and committed individuals and groups across diverse spectrums, streams of life activities in India and throughout the world. It has been and continues to be the symbolic tool of empowerment of pwd’s in negotiating their human rights to a life of dignity, in realizing their potentialities and maximizing the same, throwing up challenges and solutions alike.

India is a signatory to both the United Nations Convention on the Rights of Persons with Disabilities, 2006(UNCPRD) and Biwako Millenium Framework towards an Inclusive, Barrier-free and Rights based society for Persons with disabilities in Asia and the Pacific,2002. Towards realizing these humane goals, the Government as well as NGO’s work in tandem as well as collaboratively/collectively on various issues at different intervals with some success. However, the efforts have been sporadic and largely unsustainable, due to official and public apathy, lack of a strong enforcement machinery, a dedicated

and committed wing for information dissemination, red tapism, communication gaffes and more. By and large, the initiatives are wholly ‘welfarist’ schemes, restricted to doles and freebies at every public function that demands it- provision of hearing aids, wheel-chairs and other devices for the poor and more marginalized amongst the disabled population.

Multiple vulnerabilities….marginal identities……

Approximately 3-4% of the population in India according to Census of 2001 are persons with various disabilities. The large majority amongst the disabled population continue to languish at the fringes of development, participation and decision-making…devalued in terms of media imagery-‘afterthought’ as well at the policy and implementation levels.

Empowerment is even today, just a word to pay lip service, since in recent times, the government has largely and selectively ignored sustained efforts/protests by the disabled organisations, when it came to violations of the rights of the pwd’s. This is in sharp and glaring contrast to protests against FDI, scams and political scamsters, corruption and other issues.. which will make or break the government at the turnstiles.

Despite the myriad and contrasting scenarios prevailing today, a dedicated and committed group of disability activists from across a wide spectrum of disabilities in the country, have initiated, sustained and continue to engage with all stake holders towards realization of implementating the UNCPRD as well as the disability act including its modifications.

It is indeed remarkable how the group has garnered tremendous response and success in this herculean task of ensuring inclusion and equity of pwd’s in every sphere of

human activity. Slow but sure and firm steps, the manner and approach of the group is worthy of a management manual, a teaching aid, of communication strategies….. all through the online way as well as the personal interaction and equation with everyone in the group. Being a part of this online community of activists has been a real eye opener. It makes me wonder, ‘who really is disabled?’ is it disabling conditions,(an unfriendly and inhospitable socio-economic-political- cultural environment, inaccessible human activity spaces) or disabled mindsets(prejudices, biases, apathy, indifference), or a skewed and flawed political system that thrives on sychopancy, dogmatic beliefs) or a sloppy and ill-adviced planning and utter mismanagement of funds and resources, or the deeply entrenched societal apathy that still marks the Indian citizenry’s attitudes to civilian issues of inclusion and access? …without any doubt, these continue to be the bane of realistic progress and inclusion of a critical yet vibrant section of the Indian population.

Today, thanks to the sustained efforts of the various disability activists and their organisations, utilisng ICT (Information, Communication Technology) and the legal framework, there is a greater visibility towards issues affecting persons with various disabilities- with regard to problems, needs, related to access, info, basic life needs….issues achievements,problems etc highlighted in mass media, cinema, social media like facebook, youtube etc. This has provided a window of opportunity and hope that all issues of access and inclusion of pwd’s will be addressed, debated in the public fora. This is as it should be.

Googlegroups were a response to a felt need to synchronise, co-ordinate, network, negotiate, collaborate, share….. unity in diversity- myriad differences in perception, various disabilities of individuals and organisations working towards inclusion in various capacities, in multifarious socio-economic-linguistic-cultural-regional-situations…located in societal set up…

flight-wethepwd@googlegroups.com , accessiblechennaimetro@googlegroups.com

Genesis- much information, need to filter the same, collaborate and network, share, engage, negotiate amongst organisations, persons with disability across the length and breadth of India.. raison’d’tre- United Nations convention on the Rights of persons with disabilities(UNCPRD)

Besides a series of regular incidents of harassment and denial of right to privacy and mobility to disability activists who had a valid ticket

- Felt need to act as a pressure group- community of activists with and without disabilities.. committed to the issues…according to the UN mandate and the PD act

- To collaborate with government departments and other decision making bodies like various committees on issues of access and inclusion vis a vis pwd’s

- Lobbying for inclusion, accessible infrastructure, accessible transportation, accessible information, lobbying for change in awareness creation and attitudinal change

- Networking with other groups. Ngo’s, individuals

- Acknowledging the differences in perception and accepting the same with regard to different issues affecting pwd’s..across the spectrum of gender and disabilities

- Rethinking strategies to get the message across

- Information, communication and technology(ICT). The mantra of success.. a game changer…bridging the info divide

Modus operandi…

# emailing an issue- highlighted in the print media/sourced info from those in the know

# soliciting views/suggestions of group members,

#sharing…putting them together..conducting audits wherever possible eg access audits , finding solutions based on them and communicating the same to the group..

#submissions of draft guidelines, suggestions after consultations with the group

#workshops, consultation-discussion wherever possible

#meeting up with the policy level/implementation officials….to get the groups message across at every stage..towards inclusion

#Respecting everyone’s views/opinions by incorporating the same where relevant….

All according to the relevant legal provisions and framework..prioritising the fact of the need to engage with all stake holders/persons, including government n bureaucracy on a consistent basis- an ongoing agenda

#right to know-infomation access to information, resources, highlighting the same, informed consent.. issues affecting pwd’s

#dissemination of the info…keeping things simple…

#understanding the dichotomy between theory and practice of disability built on the prism of the welfarist model of development and acknowledging and accepting the diversity amongst the disability populace

#negotiating the ignorance and apathy on the part of the public as well as the administration with respect to

issues/problems/needs of the pwd’s and addressing the same through working together with every stake holder including the media..

#presence in social media- facebook, twitter, linkedin… both in individual n group capacities, sharing info…leveraging on contacts….

The issues at stake…and action so far…

-accessibility issues related to banking, broadcasting, voting rights,

-Copyright law

-right to education- inclusive education

-Draft national policy for children

-Industrial policy

-indecent representation of women act

-representing views to the Justice J.S.Verma committee on sexual offences against women, especially women with disabilities

-Draft sports development bill

-Universal single number in emergencies…

National design for buildings… access issues, Chennai metro rail..

Success stories

-incorporation of universal design/separate facilities suggested by disability activists in Chennai metro rail

-Justice Verma committee had included suggestions for protection of women with disabilities- criminal law amendment

-accessible features in print media

-national child policy- concerns of children with disabilities noted

These are some noteworthy success stories- but the process for greater inclusion and access is a continuing agenda…

Synergy of minds and hearts..the googling experience-what it has done and shown so far

- Leveraging on the information highway

- At the click of a mouse..instant connectivity

- Is a veritable clearing house of info and resources

- Clearing misconceptions, creating awareness and advocating the same

- Jargons explained, clarified.. through group interaction by email or even personal contact

- Paved the way for consultations with the administration and policy experts

- Barrier free approach

- Participatory and non-judgemental process of interaction amongst a large and diverse group of persons with disabilities, policy and accessibility experts and other professionals.

- Acknowledging the uniqueness of every individual, by respecting their opinions, suggestions..

- Immense possibilities and opportunities through the gains made by engaging with decision making authorities in a sustained manner

- Members are also a part of the various government committees that look into various issues open to public debate-cited in print and other media.

SWOT ANALYSIS

STRENGTHS

- Participatory approach

- Non judgemental attitude

- Open to new ideas and information

- Knowledge enhancer

- Enabling environment

- breaking barriers of every kind

WEAKNESSES

Question of access and affordability to view the info/resources for all persons with disabilities(pwd’s)

- Overlapping of issues eg banking access and disability insurance, media imagery of disability and

- Issues often subsumed by ‘other more important issues’; changing dynamics of the public sphere of influence vis a vis media coverage of issues affecting pwd’s as against the ’larger’ and ‘more important so called core issues’ of government formation, scams and scamsters gaining more prominence.

- participation of all people- with and without disabilities… a long way to go….confluence of different minds and abilities – a

dire need to enhance opportunities to work cohesively –breaking more barriers

OPPORTUNITIES

- To be a part of the decision making bodies, representating the issues for the disability population

- Change agents in terms of awareness and attitudinal changes in administration, civil society, policy level

- Strong media presence on the social media network.. garnering support

- Petitions, representations on key issues can be utilized on individual and group basis too- www.change.org www.avaaz.org

THREATS

- continued official and civilian apathy in enforcement

-reinforced stereotypes, biases, deeply entrenched social customs and practices, the social conditioning systems in the family, in thinking, implementation, media coverage of issues concerning pwd’s.

- socialization patterns that encourage dependence and discourage empowerment, independence of persons with disabilities. Very true despite the visibility of the disability sector over the past decade.

- discriminatory practices vis a vis male and female child with a disability

Activist speak…

‘Inclusive policy making and speaking in one voice is a huge tool in social change and empowerment’ – Amba Salelkar,

lawyer and activist, Inclusive Planet, Chennai www.inclusiveplanet.org.in

Emailed views of Amba Salelkar, Inclusive Planet, one of the prime movers in the drafting of various policy considerations

genesis of the formation of the googlegroups,

I think the formation of the group was by Rahul Cherian, the late founder of Inclusive Planet. He was finding it very difficult to really gather everyone together and solicit inputs individually, this gave an opportunity for everyone to contribute and for everyone to discuss the contributions of others as well

strategies used to highlight used

We compiled a list of NGOs and individual activists and enthusiasts that we could reach out to every time a policy intervention presented itself. Many people started asking to be included on these lists. We reached out to different disability groups, accessibility experts, groups focused on gender and disability, and groups from both urban and rural sectors to get a healthy mix. We didn't want to lose out on anyone. We make sure we credit contributors and supporters in all our representations.

gains and achievements

The gains have been tremendous. Our policy interventions would not be complete but for the inputs from this large circle. I come from a history of psycho social disability, and Rahul lived with a physical disability. Between the two of us, as much as we could imagine what problems were faced by persons of various disabilities, it really takes someone living with those disabilities to really drive the point home. Policy makers also really stand

up and take notice when interventions are made by such a large number of groups.

success and failure

It's been mostly happy stories. Many policy interventions on our side have been sucessful after doing a holistic representation of the issues concerning persons with disabilities: The Justice Verma Commission Report and the consequent amendment to criminal law, the TRAI took note of our raining concerns with the single-stop emergency number, the National Child Policy includes the concerns of children with disabilities to a greater extent, etc.

Failure, to an extent, is to do with the short staff at Inclusive Planet and the deadlines of these papers, often I can only put them out with a few days to spare for the deadline and so quality inputs are not possible.

forward/backward mechanisms as a tool of social change/empowerment

Inclusive policy making and speaking in one voice is a huge tool in social change and empowerment.

your organisations's web links etc... all about u....and yr work

www.inclusiveplanet.org.in

The road ahead… long,winding, rough terrain..of opportunities and possibilities…

The little done.. the vast undone…..can best depict the current scenario. Hope continues, the struggle for Access, Inclusion

and Equity to all Persons with Disabilities an ongoing agenda…different places at different times, sustained and nurtured at every step…through Technology and Innovation…

Our minds are like parachutes… they function only when open..be openminded, flexible..open to change in mind, heart and spirit… of the immense possibilities, amazing opportunities..to make a difference in the lives of all persons with disabilities…at home, at school,in the street, hospitals, banks, government offices…. through the media.. and more……together we can…

Feel free to contact me…drvj70@gmail.com.,

Linkedin- linkedin/drvjanaki

Facebook- janakiramanathan

Twitter-drvjanaki

Thank you..

Annexure A: Article 9 of the UNCRPD: Accessibility

1. To enable persons with disabilities to live independently and participate fully in all aspects of life, States Parties shall take appropriate measures to ensure to persons with disabilities access, on an equal basis with others, to the physical environment, to transportation, to information and communications, including information and communications technologies and systems, and to other facilities and services open or provided to the public, both in urban and in rural areas. These measures, which shall include the identification and elimination of obstacles and barriers to accessibility, shall apply to, inter alia:

(a) Buildings, roads, transportation and other indoor and outdoorfacilities, including schools,

housing, medical facilities and workplaces;

(b) Information, communications and other services, including electronic services and

emergency services.

2. States Parties shall also take appropriate measures:

(a) To develop, promulgate and monitor the implementation of minimum standards and

guidelines for the accessibility of facilities and services open or provided to the public;

(b) To ensure that private entities that offer facilities and services which are open or provided

to the public take into account all aspects of accessibility for persons with disabilities;

(c) To provide training for stakeholders on accessibility issues facing persons with disabilities;

(d) To provide in buildings and other facilities open to the public signage in Braille and in easy to read and understand forms;

(e) To provide forms of live assistance and intermediaries, including guides, readers and professional sign language interpreters, to facilitate accessibility to buildings and other

facilities open to the public;

(f) To promote other appropriate forms of assistance and support to persons with disabilities

to ensure their access to information;

(g) To promote access for persons with disabilities to new information and communications

technologies and systems, including the Internet;

(h) To promote the design, development, production and distribution of accessible

information and communications technologies and systems at an early stage, so that these

technologies and systems become accessible at minimum cost

External resources- web links…. Sourced from SightSavers document on Disability and social inclusion

Disability Rights Fund: an extensive list of resource links, http://www.disabilityrightsfund.org/resources.html

Equality and Human Rights Commission: details of UNCRPD in the UK, http://www.equalityhumanrights.com/human-rights/international-framework/un-convention-on-therights-of-persons-with-disabilities/

Include Everybody: campaign on disability and MDGS, http://www.includeeverybody.org/

International Disability and Development Consortium (IDDC): http://www.iddcconsortium.net/joomla/

International Information Support Centre: introductory CBR resources and manuals:

http://asksource.ids.ac.uk/cf/keylists/keylist2.cfm?topic=dis&search=QL_DISCBR05

Making It Work: implementing the UNCRPD http://www.makingitwork-crpd.org/

Syracuse University College of Law: disability law: http://www.law.syr.edu/lawlibrary/electronic/humanrights.aspx

The Lancet: special issue on disability http://www.thelancet.com/themed-disability

United Nations Enable: UNCRPD, the MDGs and disability: http://www.un.org/disabilities/

World Health Organization (WHO) Disability: MDGs and CBR, http://www.who.int/disabilities/en/

WHO, ILO and UNESCO: CBR Joint position paper 2004, http://www.who.int/disabilities/cbr/en/

SOME INTERESTING BUT USEFUL LINKS

http://www.disabilityinfo.org/Resources/MNIP/MCR/InternationalLinks.aspx http://www.disabilityinfo.org/Resources/MNIP/MCR/default.asp

Disability Etiquette Links:

Disability Etiquette Tips for Speaker Engagements / Job Accommodation Network

http://www.jan.wvu.edu/media/etipresent.html

United Spinal Association

http://www.unitedspinal.org/disability-publications-resources/disability-etiquette/

San Antonio Disability Conversation Etiquette

http://www.sanantonio.gov/publicworks/dao/etiquettehandbook2011.aspx#CE

You Tube Videos on Disability Etiquette

Institute for Community Inclusion has six You Tube videos that tech people to communicate with people with disabilities.

http://www.youtube.com/playlist?list=PL493DE4B58144B586&feature=plcp

http://inclusiveplanet.org.in/policies

http://www.disabilityindia.com/html/assistivetechnology.html

http://barrierbreak.com/resources/keys-u-see-large-print-keyboard-a-typing-solution-for-multiple-disabilities