11

Introduc�on

Introduc�on At the heart of new legisla�on is an impera�ve to understand the dis�nc�ve nature of

disabled people’s oppression. Only then can we tackle the discrimina�on they face. Disability

equality will therefore be important to those faced with the job of challenging inequality

within our services. This book presents clear ideas and simple steps that will help you ensure

that disabled children, adolescents and adult clients are fully respected and included in the

life of your organisa�on.

This book will help you:

• Gain a greater understanding of the character of disability

You’ll be able to be�er iden�fy the issues facing disabled people as a protected group under

the Equali�es Act 2011

• Re-evaluate your ideas, prac�ce, provision and par�cipa�on

Your service needs to comply, but we hope you can go further and drive forward the

empowerment and ethical commitment that meets everyone’s needs. For years, many

organisa�ons have tried to implement the theory of disability equality. However, many of

you have told us that applying the theory to daily prac�ce is a major challenge. This book

aims to make change both possible and prac�cal.

• Deepen your understanding

By broadening your insight into dealing with the discrimina�on disabled children and adults

face, you’ll discover more crea�ve ways to tackle it.

• Embrace change

Posi�ve development is not only essen�al, it’s an exci�ng challenge. When you understand

the stereotypes and how they unconsciously affect word and behaviour, you will be able to

break the prejudice that obstructs and damages many disabled people. With knowledge

comes enlightenment and the power to make change happen.

13

How to use this bookTo help you on your journey, we outline ideas on the pages marked with a purple bar. These

ideas represent a synthesis of current thinking from many sources: academic texts, popular

authors and current research. We hope that some ideas will stretch even the most

knowledgeable reader. However, it is wri�en clearly and directly so that all feel welcome to

join in.

Pages with a green bar show a number of ques�ons, examples or scenarios outlining the

difficul�es an organisa�on may have and examples of be�er prac�ce. The scenarios have

been inspired by our work with teams in many organisa�ons. However, they are fic�onal,

and we would not expect to find any single organisa�on with such clearly defined problems.

.

How to use this book

Part 1: Ideas and Theory

Be preparedWhile ge�ng the welcome right is important, crea�ng a deliberate invita�on is

fundamental2. One in 10 people are disabled, so it’s likely that many people using or working

in your organisa�on are affected by some kind of impairment. However, only one in four

disabled people are wheelchair users and since many impairments are hidden, you may be

unaware that colleagues and service users are indeed disabled29. There are a number of

reasons for this: if impairments are generally unseen (such as epilepsy or depression) there

would be no reason to share the informa�on, so it is not in the public domain. Not all

impairments are s�gma�sed or perceived as problema�c16. For example, some people with

visual impairments wear glasses but are not categorised as disabled. But where disabled

people have been perceived and treated differently, or excluded from mainstream

organisa�ons, a social divide develops. Social exclusion and s�gma means that many of us

have not had the experience of a meaningful rela�onship with a disabled person and we may

fear the unknown. For some people, interac�ng with disabled people may seem like a totally

new experience.

Unfortunately, disability is generally viewed as a problem and disabled people face a social

oppression. In other words, their daily experience is o�en more challenging than their

non-disabled peers. In order to restore fairness and return those who have been

marginalised back to the daily lives of our communi�es and organisa�ons, ac�on is essen�al.

This means deliberately invi�ng people back into the places where they may previously have

felt uncomfortable or alienated. It demands that any discrimina�on must be addressed,

allowing them a natural and ordinary experience. Many disabled people can s�ll recall the

pain of rejec�on, or the difficulty of having to ‘fit in’18.

15

01 Be Prepared

The law says that harm is done when professionals fail to take the necessary steps to ensure

that disabled people can access and par�cipate fully in an organisa�on’s ac�vity.

The first step in ge�ng this right is to take �me to audit and plan our par�cular

organisa�on’s priori�es. Then, once we expect diversity to come through door and are ready

with a mul�tude of strategies to suit all types of individuals, we need to make sure people

feel comfortable: giving them what they need is not the same as invi�ng them to join. As we

will see later, for someone used to being excluded the offer needs to be posi�ve and made

with integrity. Asking disabled people to join in needs to involve a commitment to change

those elements which may cause distress. Therefore a posi�ve invite comes with a promise

to listen! Belonging is everything here! Simply being in the room together is not enough. For

people to feel they belong they need to feel part of the ac�vity and the dialogue.

Furthermore, par�cipa�on includes a sense of power, something which must be handed

deliberately to those who have previously been denied it. It is as important for us to feel

listened to as it is to actually get what we need: compromise is fine as long as the decision is

shared.

16

01 Be Prepared

Proac�ve invita�on

Consult people within your locality:

• Are there organisa�ons that support disabled people who could help you with your audit?

• Are there families within your service with disabled family members willing to help?

• Are there disabled professionals with the correct exper�se willing to share advice?

Scenario 1

Workers in Organisa�on A are willing, competent and qualified. However they assume that

disability does not concern them: they have never met anyone with a significant disability

and think disabled people all need wheelchairs and lots of specialist help. As a result, they

are insular although in general their prac�ce is outstanding.

Scenario 2

Organisa�on B have been involved with a reasonable numbers of disabled children and

adults over the years. They audit their organisa�onal priori�es every 18 months. They also

make an effort to talk to new mums, local ac�on groups and na�onal organisa�ons to keep

abreast of developments and new legisla�on.

01 Be Prepared

17

Acknowledging differenceEquality is not about being treated the same, but rather being valued for who we are. It may

be that some accommoda�ons required by disabled people will not suit everyone. A�er all,

some requirements are complex and accommoda�ons may suit only the few. However, this

does not mean that we cannot do more to be fair: a spirit of flexibility is pivotal. Some

changes may help everyone (eg large print, ramps and flexi-�me). But if an accessible parking

space or Braille is essen�al for one par�cular person’s par�cipa�on it is only fair to make the

change to enable that individual to experience what is for others ordinary and everyday,

their basic needs must be met. How they are met may differ. Ensuring parity of experience is

not dependent on having the same ‘por�on size’ but a fair por�on size. It follows that this

book is not about giving everyone the same thing. Equality means that everyone in all

communi�es can enjoy fair opportunity. By contrast, inequality is the lack of fairness

imposed by the different opportuni�es offered or withheld on the basis of individual

characteris�cs. Inequality currently prevails, and to restore fairness we need equity – specific

ac�on which accommodates, or removes barriers. Equity also demands longer-term

strategies that will empower and enable contribu�on for all. An equal share of all outcomes

are the aim, therefore in the short term posi�ve ac�on will be essen�al to accommodate

even the smallest number of people while wider fairness is tackled.

18

02 Acknowledging difference

Acknowledging difference

• As a result of your audit are all needs being met?

• Do you know who within your organisa�ons may be disabled?

• What tac�ul and effec�ve methods will you use to find out?

Scenario 3

In Organisa�on C there are ramps and an accessible toilet, but beyond the physical

environment, there has been li�le thought about challenging exis�ng prac�ce. Service is not

regarded as something which can be made be�er and more ethical. For example, although

people with learning difficul�es might be invited to par�cipate, signage is not made

accessible with images or symbols, and those with mental health needs are not given the

working flexibility that helps them cope with their condi�on.

Scenario 4

Organisa�on D has had an implementa�on plan running since 1999. Ini�ally they could not

afford to make every room accessible, so they ensured that the easiest-to-reach rooms were

made accessible as need arose. This o�en meant swapping rooms if wheelchair users arrived

unannounced. The high degree of flexibility also generated a greater sense of shared

ownership of the space and helped break through many other divisions and barriers. While

managers accepted the situa�on was far from ideal, every effort was made in the short term.

Long-term strategic planning ensured that changing the building or reloca�ng was ac�vely

discussed.

02 Acknowledging difference

19

Size and scale Far too many disabled people encounter rejec�on and nega�ve a�tudes almost as a ma�er

of course. Everyone can cite an instance where they were underpaid or turned down for a

job. However, it is the frequency and some�mes the violence of the abuse of disabled people

that o�en shocks and surprises8. They are far more likely than their non-disabled peers to be

out of work. Many may have had a poor experience of school and with fewer qualifica�ons

may find it hard to prove their worth. Only one in four disabled people of working age are

currently in employment, compared with four out of five non-disabled people. They are

more likely to experience problems with hate crime or harassment: one quarter of all

disabled people say that they have experienced abuse and this number rises to 47% of

people with mental health condi�ons27. In other words if you are a young woman with a

learning difficulty it would be surprising if you reached 18 without having experienced some

kind of abuse. These are worrying sta�s�cs, as they show the profound nature of a social

problem that goes far beyond difference and ability. Nega�ve stereotypes and the legacy of

segregated ins�tu�ons and different treatment mean that despite the significant popula�on

of disabled people in society, many s�ll remain marginalised by years of restricted

opportunity. To make ma�ers worse, many are then blamed for their lack of skill and

exper�se, or ridiculed for their efforts. The reac�on of many disabled people is to fight back,

become angry or give up. Unfortunately this behaviour (a clear reac�on to social rejec�on

and s�gma) merely stokes the cycle of inequality.

Just as racism, sexism and classism all promote stereotypes, so disability is manifested in

nega�ve a�tudes and false stereotypes that lead to prejudice. Unlike sexism or racism,

however, you won’t find disablism in the dic�onary. Yet it describes an all-too-real

issue - discriminatory, oppressive or abusive behaviour arising from the belief that disabled

people are inferior to others. ‘Ins�tu�onal disablism’ describes a whole organisa�on’s

disablist a�tudes, prac�ce and culture. 8

20

03 Size and scale

Unfortunately for many this is a concealed problem, making it difficult to challenge the

stereotypes and prejudices about disabled people. Just as we would challenge racist or sexist

behaviour in an office situa�on, more ac�on should be taken to prevent stereotypes from

limi�ng expecta�ons about individual achievement.

21

03 Size and scale

Stereotypes and prejudice

03 Size and scale

22

Stereotypes

Helpless, incapable and costly Stupid, dumb and cluelessVic�m Nasty and frighteningBrave and courageousUnpredictableFunny and weirdOvercompensa�ng Aggressive Dishevelled and ill-kempt A burden or outcastNon-sexual or not in a rela�onshipA taker Incapable of contribu�ng Invisible

Ins�tu�onal or professional reac�on

Avoid Call in help Ask people to prove themselvesOver protect Segregate Test Overcompensate Exclude Lie to protect from harmCross the road to avoidBully and denigrateSend elsewhere Expect higher standards Impose harsh restric�ons

Disabled people then feel:

AngryDepressed Vengeful Sad Insecure Fearful Suicidal Withdrawn Ashamed Frustrated

Disabled people then:

WithdrawInsultOvercompensate Swear Disappear Fight backFeel ungratefulGrumble

Understanding disablism The social oppression disabled people face has a deep impact which adds to the problems

some impairments may cause. And while impairments are personal, disablism is imposed by

society at large. Therefore, it is essen�al that we all understand disablism, and take a shared

responsibility to remove it from the public domain. We need to acknowledge that oppression

occurs and that disabled people are subject to the very real effects of other peoples’

a�tudes and beliefs. We do not need to give disablism a posi�ve spin: instead, we need to

demys�fy, explain and understand this nega�ve force. Different communi�es will have

different a�tudes to their disabled members. Whether these a�tudes are posi�ve or

nega�ve is not the issue. What ma�ers is the influence they have on our expecta�ons of

disabled individuals and consequences for their lives17.

Disabled people have been subjected to nega�vity and prejudice for many years, so it is

hardly surprising that such impacts are o�en internalised. Oppressive a�tudes affect the

way we perceive ourselves and tend to limit our expecta�ons. Disabled individuals may not

experience the extremes of hatred, violence or aliena�on but for many, restricted

opportunity or the lack of encouragement to express free will, ideas, and dreams begins a

vicious circle of dependence. In turn, this influences wider cultural phenomena such as

segrega�on and hate crime17. Many disabled people develop a thick skin, give up the fight

and live with the situa�on. However, even the most minor act or comment may inflame (not

everyone feels pain in the same way). For those whose resilience is high, the internal radar

may stay firm and self-esteem is unaffected, but where people are struggling daily, just a

li�le extra pain can overwhelm. Surely, a�en�on must now focus not on the size of

charitable dona�ons that compensate for the tragedy of disablement, but on the rights of

every individual and the need for change in the system.

We must acknowledge the nega�ve impact of historical influence on our thoughts, a�tudes

and beliefs in order to understand why difference is such a rich source of fear and guilt.

23

04 Understanding disablism

History acts to deny the abili�es and value of disabled people. It explains the fear we feel

when dealing with any situa�on that goes beyond our experience. As a result we fail to

appreciate the part disabled people can play in our contemporary communi�es. By

ques�oning our past more rigorously we may shed light on our problem, allowing us to take

control and make our systems and organisa�on more equal.

24

04 Understanding disablism

Understanding Disablism

Few press stories challenge the social oppression or discrimina�on which leads to human

rights abuse on our very doorstep. As the following paragraph suggests, we all need to

become more able to recognise hate crime in all its guises.

For years, I have been scep�cal about the no�on of disability hate crime. While

acknowledging occasional grotesque crimes such as the death of David Askew, I refused to

believe that this was a common problem… things changed my a�tude… I asked several

colleagues who work as advocates and supporters of people with intellectual disability

about what they knew. They confirmed immediately that harassment was a constant

feature of the lives of every person they worked with. They told me about conferences and

gatherings where people had shared horrific experiences, which to them were

commonplace. People being sellotaped to trees while people laughed, people being

urinated on, people who had dog faeces put through their le�er boxes, people who were

beaten up. Faced with this constant exposure to the risk of abuse and violence, people with

intellectual disability remained stoical and uncomplaining. Some�mes they were unable to

make a complaint. O�en, they were disbelieved, or were not taken seriously as witnesses.

In most cases, the police were unwilling or unable to take effec�ve ac�on.

(Shakespeare, T. The Guardian, 15 March 2010)

While these are startling examples, the belief that disabled people lack feeling also fuels the

taun�ng that may be seen as the thin end of the wedge. More subtle behaviour, cloaked by

organisa�onal rules and culture is as damaging.

04 Understanding disablism

25

Scenario 5

In Organisa�on E, people have worked with disabled professionals in the past, but despite a

huge welcome they were not fully accepted as equal and were therefore not considered part

of the team. Where their exper�se was ignored, so� bullying (such as harsh and

unprofessional cri�cism not usually tolerated among the team) occurred. Rela�onships

inevitably disintegrated and the disabled colleagues le� angry and ridiculed.

Scenario 6

Organisa�on F has worked hard to change the behaviour of all staff so that disabled people

are not only made to feel welcome but the presence of disabled colleagues has altered ways

of working. In order to resolve bullying and related issues, a reverse mentoring scheme was

introduced. New rela�onships between managers and aspiring disabled leaders have helped

raise awareness on many levels because managers have come to value the experience of

their colleagues. With the understanding made possible within new rela�onships, managers

have wanted and therefore supported radical changes in working prac�ce. Furthermore,

culture has shi�ed significantly, as more people have felt able to tackle intolerant behaviour

because of the trust developed with the opportunity for dialogue. More subtle a�acks are

now rare, and everyone has been pleased with the changes.

04 Understanding disablism

26

Different perspec�ves Historical legacy

As Michael Oliver states in his introduc�on to the Poli�cs of Disablement:

On the experience of disability history is largely silent, and when it is discussed at all, it is

within the context of the history of medical advances. Just as women and black people

have discovered that they must write their own histories, so too with disabled people18.

Because disabled people were segregated in the past, many non-disabled individuals will

view the past as devoid of disabled people even though the popula�on has always been rich

in variety. It may be that the silence we face today happens because segrega�on has meant

that many of us have never met a disabled person. In such circumstances, our perspec�ve on

their presence in our neighbourhoods is inevitably skewed. In other words, while disabled

people have always existed, our belief is that they do not because we don’t expect to see

them. Furthermore, it’s unlikely that people will ques�on what is not there13.

The voice of disabled people has long been ignored and this legacy is s�ll apparent in

contemporary service organisa�on. The lack of medical knowledge un�l the mid-nineteenth

century meant that impairments were seen as punishment for past sin. During and a�er the

industrial revolu�on, asylums were erected to house disabled people and keep them

removed from their local community. In the context of Britain’s burgeoning industrial

growth, disabled people were perceived as non-produc�ve, o�en ineducable and therefore

irrelevant to the na�onal economy. For example, people with speech difficul�es were

labelled ‘idiots’ and locked away under the 1913 Mental Deficiency Act. Around this �me,

the eugenics movement considered the destruc�on of the apparently weak, sick and

feebleminded. The early eugenicists were medical scien�sts who supported the mass

incarcera�on and lifelong sexual segrega�on of disabled people. Since disabled people were

perceived as a heavy burden on society, they also had to be stopped from reproducing ‘their’

27

05 Different perspec�ves

kind. Many disabled people all over the world were sterilised or killed. Society today is s�ll

heavily influenced by these pervasive historical a�tudes and prejudices.

Modern language and images

The power of the communica�ons media gives enormous poten�al for misrepresenta�on of

disabled people. Alarmingly, the message is o�en the same as in earlier centuries, if

some�mes less obvious. Glossy fashion and lifestyle publica�ons rarely feature disabled

people alongside celebri�es – the cult of the beau�ful thrives. News stories argue for

prenatal tes�ng to prevent the birth of severely impaired children, such as those who are

blind, have Downs’ syndrome, au�sm or severe learning difficul�es: their preven�on is

deemed to be in the public interest.

Adver�sements endorsing chari�es appear regularly on our screens and radios: these are

usually highly emo�ve both in design and language. Li�le regard is given to disrespec�ul

language that perpetuates ideas of dependency, cost, need and shame. ‘Survivor’, ‘brave’,

‘tragic’, ‘courageous’, ‘carer’, ‘sufferer’, ‘vic�m’: these words are used liberally, but they do

not depict an image with which disabled people would iden�fy. In films, soaps and books,

disabled people tend either to be evil characters or brave and courageous individuals who

are wri�en off or lose their sexual power. Unlike real life, few simply exist with their

impairment. Even so it is ironic that non-disabled actors are o�en assured awards and fame

by playing a disabled character.

28

05 Different perspec�ves

Consider this…

• For one week, collect evidence (eg press images and stories) about disabled people.

• Does your evidence reflect the stereotypes discussed above?

• How do these stereotypes affect your interac�ons with disabled people?

Scenario 7

The website of Organisa�on G, an employment agency, publishes its an�-discrimina�on

policy. It states that they ac�vely seek applica�ons from all ‘minori�es’, including women,

older people and people from ethnic backgrounds. When ques�oned why they did not

men�on disabled people the reply was, “Disabled people cannot work. It is their fault not

ours, as they are not able and cannot get be�er”. The respondent saw no problem with their

response. In fact, as well as being distasteful to many, the response breaks the law under the

Equali�es Act 2011.

Scenario 8

In Organisa�on H people have come to realise that some a�tudes are hard to challenge in

prac�ce. Erroneous ideas about disabled people’s lack of professional competence s�ll

unconsciously affect others’ behaviour and language. A�er an experienced and disabled

consultant was ridiculed at a presenta�on by a trustee, the lack of professional courtesy

remained unchallenged by others – a clear indica�on of covert discrimina�on. However, the

problem was iden�fied by managers. Disability equality training was arranged for the whole

organisa�on including the board. People now report feeling more confident about using

respec�ul terminology. Disability equality is explained to all newcomers and is clearly evident

in all policy and guidance.

05 Different perspec�ves

29

The medical model of disabilityThe ‘medical model’ embodies the overriding cultural and historical response to disabled

people22 23. Although today some responses are less radical, segrega�on and cure s�ll hold

sway in our understanding. The model is one of deficit: it focuses on an individual’s lack of

ability and iden�fies medical interven�on as the solu�on. Many organisa�ons have

tradi�onally been impairment-focused, led by non-disabled professionals employed to ‘fix’

the problem within the individual. They have provided specialist services and support which

are o�en seen as an addi�onal por�ons of pie given in an effort to compensate for personal

tragedy19. The medical model simply ar�culates the view of disabled people as passive

receivers, ‘the needy’, some�mes worthy of extra benevolence and charity (see Fig. 1). If

help can be provided in a mainstream se�ng without too much effort, then the individual

may be integrated within the ins�tu�on’s terms. Otherwise, disabled people may be offered

different op�ons, such as specialist placement or isola�on at home. All too o�en, the lack of

understanding has led to abuse of freedom, denial of personal need and loss of dignity.

Where expert power overrides family and professional judgement, clinicians have been given

the right to make decisions in people’s lives. Unfortunately, this can also affect areas in which

they do not have appropriate exper�se, such as schools, employment, housing and

transport17.

We have already considered the prevalent, nega�ve and unhelpful media images of disabled

people, but some�mes our professional language also lacks respect. Alas, people frequently

confuse disability and illness, and use the two words as though they have the same meaning.

However, they need to be understood as different. We cannot deny that the two are o�en

linked but while illness is something we are all subject to at different �mes, being disabled is

a reac�on people face to their difference which may be a stable condi�on or the result of

illness. The two meanings cannot be equated: illness is a personal ma�er while disablism is

in the public domain. Therefore, while a medical model of illness may indeed save a life,

applying treatments or cures to other aspects of a disabled person’s life makes li�le sense.

30

06 The medical model of disability

Yet confusion con�nues to permit medical categorisa�on and clinical interven�on that

amounts to an abuse of power in areas such as access to support, personal care, educa�on,

housing, and transport – areas which have li�le or nothing to do with medical ma�ers. The

extended power of some professionals in disabled people’s lives can place great pressure on

other priori�es equally cri�cal to wellbeing. For example, specialist appointments may leave

li�le �me for play, rela�onships and other life-building ac�vi�es22.

Families may struggle with the insensi�ve words and nega�ve assump�ons of those around

them when illness or condi�on a�racts inappropriate a�en�on from others. As a family is

subjected to the weight of a member’s oppression, they experience the physical, systema�c

and a�tudinal barriers by associa�on. People who acquire impairments later in life face

similar problems in coping. Not only may they have to deal with new personal difficulty, but

they have to make sense of others’ responses to their difference. For these reasons, coming

to terms with different circumstances can for some people indeed represent a tragedy, as the

experience can be extremely painful. While we cannot ignore this pain, we need to act

publicly to address the issues in our own profession, including the behaviours and daily

ac�vity that impact nega�vely on disabled people. We need to acknowledge that addi�onal

suffering is primarily due to ignorance and a lack of access to ‘ordinary’ opportuni�es that

others enjoy. The medical model’s significance lies in its contrast between the personal and

public domains. Disabled people may choose to share their personal and private ma�ers

although they cannot be made to: disclosure takes place most easily when supported by

trus�ng rela�onships. The medical model must also be seen in balance, contras�ng with a

social model of disability23.

31

06 The medical model of disability

EQTraining Publishing 978-0-9567131-1-7

www.equalitytraining.co.uk