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.
How to use this book
How to use this book To 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. .
01 Be Prepared
Part 1: Ideas and Theory Be prepared While 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.
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.
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.
02 Acknowledging diﬀerence
Acknowledging diﬀerence Equality 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.
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.
03 Size and scale
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
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.
03 Size and scale
Stereotypes and prejudice Stereotypes
Ins�tu�onal or professional reac�on
Helpless, incapable and costly Stupid, dumb and clueless Vic�m Nasty and frightening Brave and courageous Unpredictable Funny and weird Overcompensa�ng Aggressive Dishevelled and ill-kempt A burden or outcast Non-sexual or not in a rela�onship A taker Incapable of contribu�ng Invisible
Avoid Call in help Ask people to prove themselves Over protect Segregate Test Overcompensate Exclude Lie to protect from harm Cross the road to avoid Bully and denigrate Send elsewhere Expect higher standards Impose harsh restric�ons
Disabled people then feel:
Disabled people then:
Angry Depressed Vengeful Sad Insecure Fearful Suicidal Withdrawn Ashamed Frustrated
Withdraw Insult Overcompensate Swear Disappear Fight back Feel ungrateful Grumble
04 Understanding disablism
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.
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.
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
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.
05 Diﬀerent perspec�ves
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’
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.
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.
06 The medical model of disability
The medical model of disability The ‘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.
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.
Addressing the implications of the Equalities Act, our new practical handbook is set to provide more exciting insights in an easily accessib...