Tom Shakespeare speech at British Library 30th May 2014

BL Equality Lecture

Introduction

Tom Shakespeare

SLIDE: LB

Disability provides a wonderful example of what the American sociologist C Wright Mills called “the sociological imagination”, by which he meant making public issues out of personal troubles. That’s exactly why I am now showing a slide of Connor Sparrowhawk, to whose memory I am dedicating this lecture, and I will say a little bit more about him in a moment.

Since the late 1960s, social policy and sociology researchers such as the late Peter Townsend and Michael Oliver and Colin Barnes and Jenny Morris have shown how disability is an issue of social structures and social relations, not just individual experience.
SLIDE: books

They have also documented the discrimination which disabled people face, in books including Disability in Britain; The Politics of Disablement; Disabled People in Britain and Discrimination; and Pride Against Prejudice.

Actually, this reconceptualization originated from the social movement of disabled people themselves.

SLIDE: Le Court

Forty years ago, UPIAS was a small group of radical disabled people, either living in institutions or newly living in the community, which developed a new account of disability.
SLIDE: Gramsci

To use the words of a disabled Italian communist, Antonio Gramsci, these were the organic intellectuals of the disability movement.

Disability is not simply a matter of biology. According to the social model, disability is not about what Oliver memorably called “personal tragedy theory” but instead should be understood as a form of social oppression. People with impairments are disabled by society, not by their bodies.

SLIDE: Reclaiming

Reclaiming our Futures, the UK disabled people’s manifesto uses this social model approach to identify what is wrong with Britain today, and demand human rights for all disabled people, following the UN Convention on the Rights of Persons with Disabilities.

SLIDE: CRPD

In this lecture, I will first review how Britain treats disabled people and ask how far the situation has improved over the last few decades. Second, I will discuss some of the ways in which disability is conceptualized. Third, I will show why I think it’s important to take account of impairment, not just disabling barriers. UPIAS thought of disability as something imposed on top of impairment. Jenny Morris argued that it was important to consider impairment alongside disabling barriers. I share these perspectives.

SLIDE: How does Britain treat disabled people?

Colin Barnes’ 1991 book had chapters on housing, transport, employment, education and other aspects of society, and in each case he marshalled the evidence to show that disabled people faced discrimination. In some of those areas, there has been really significant change.

SLIDE: stairs

a) accessibility

As a result of the Disability Discrimination Acts of 1995 and 2005, huge gains in accessibility have taken place across Britain. Coming to London today, for example, I can take any train. I can take any taxi. I can take any bus. I can get into the British Library, and I can get into almost any public building, except for some of the historic ones. The Underground is still largely inaccessible, despite recent improvements. And we have to be aware that accessible transport doesn’t always work: ramps break down, staff don’t turn up to get you on or off a train, and taxi drivers sometimes refuse to take a wheelchair user. But despite these reservations, Britain has vastly transformed over the last twenty years, and is now one of the most accessible countries in the world, after the United States.

b) attitudes and violence

In 2009, the British Social Attitudes Survey asked questions about attitudes to disability. 85% of respondents said that they thought of disabled people as being the same as everyone else – marking an improvement since 2005, when 77% of people felt they thought disabled people were the same.

Okay, if we stop the lecture now, all seems pretty good. Job done for the disability movement.

Yes and no. Someone like myself, for example, who is a disabled person but has a good professional job, earns a decent income, lives in his own home, drives his own car, and is in control of his own life is generally doing fine. I have a significant impairment, but I am not very disabled by society. However, I am not typical.

We know this, for the same reason that the name Winterbourne View is now legendary.

SLIDE: Winterbourne

This was the institution where people with learning difficulties were neglected and abused by the care workers who were meant to be supporting them. It may be an extreme case, but other places are also bad. Let me quote from a young man called Dan, who now is an inspector of care homes, and who used to live in another care home, about what life was like for him then:

“You were told what to do and it didn’t feel homely. It felt very cold in the atmosphere in the house because the staff used to sit in my living room on their mobile phones. This made me feel angry. The staff used to watch what they wanted on the television and they would turn the two other residents who were disabled women to the wall while they, the staff, watched the television.

One of the women who lived there, when she needed the toilet, the staff said she had to have 2 wees in her pad before they would take her. So every time she said she wanted to go to the toilet they just said ‘No’ and ignored her. I hated to see this but I couldn’t say anything because it would get me into trouble. I felt angry.

They made her go to bed. She said she wanted to stay up but they convinced her she wanted to go to bed and in the end she agreed with them.

They never cooked my tea so one time I went for 3 days without eating. Whenever I wanted tea they would leave it in the microwave, they would never make it fresh.”

If you live in residential settings or depend on social care services, you are going to be at greater risk.

Disabled people are also at risk when they live in the community. Disabled people are reporting more hate crimes being committed against them, and the police are finally taking this issue seriously. Disability hate crimes were only recorded for the first time in 2009, when 1,211 such crimes were reported to the police. For 2011-12, there were 1, 744 such crimes, as compared to 35,000 race hate crimes and 4,252 sexual orientation hate crimes.

SLIDE: LPA

In my view, this does not capture the full picture of negative treatment of disabled people. Many people are reluctant to classify everyday experiences of bullying and harassment as hate crimes. When my team conducted research with people with restricted growth a few years ago, we found that:

 

  • 96% have experienced staring or pointing.
  • 77% have been on the receiving-end of verbal abuse.
  • 75% feel they often attract unwanted attention.
  • 63% of respondents have often felt unsafe when out.
  • 33% have been physically touched by people in public.
  • 12% have experienced physical violence.

c) poverty

Another area where there has been minimal change is employment. According to the Labour Force Survey, roughly 12% of working age people are defined as having a disability – in other words, an impairment which substantially and adversely affects amount and/or type of work, as well as activities of daily living. Disabled people are about twice as likely to be unemployed as non-disabled people. However, the Black report (2008) identified a slight reduction in this employment disadvantage. During the last government, the increase in the numbers of people employed in the public sector, from 19% to 21% of the work force, would have had a very positive effect on disability employment, while the recent cuts in public sector employment will correspondingly have had a negative effect.

A recent paper by Jones and Wass (2013) also reports a gradual fall in the number of disability benefit claimants from 7.4% of the working age population in 2000 to 6.5% in 2011. This may be due to the tightening of eligibility with the transition away from Incapacity Benefit to Employment Support Allowance, because while the disability employment gap has reduced, it remains at over 55% for men and 45% for women.

SLIDE: wheelie worker

There’s a couple of other important points about disability and employment, which came through in the research project that my team did with people with restricted growth, as well as in other studies. Some groups of disabled people are less likely to be unemployed. But even working disabled people are still economically disadvantaged. Disabled people are 14% more likely to work part time than non-disabled people. This means of course that their incomes are likely to be lower: 30% earn less than the Living Wage, according to the EHRC (as compared to 26% of nondisabled people). Disabled people are far more likely to retire early than non-disabled people, as we found in our restricted growth study and Nick Watson found in his ageing with cerebral palsy study.

Disabled people are also overrepresented in lower occupational roles, and much less likely to be in managerial and professional roles. This may be partly due to discrimination, partly due to poor educational achievement. But we found our restricted growth respondents had educational qualifications equivalent or better than their nondisabled peers. However, we found that they had been discouraged from considering better careers, because of low expectations of others. They had also tended to stick in a junior role which they were performing well in, and where they were accepted, rather than risk losing what they had gained by attempting to be promoted to a more senior role. The notion of the glass ceiling which we are familiar with from women’s employment seems completely relevant to disabled people’s employment. Finally, the 2008 Fair Treatment at Work survey shows that 27% of disabled people, as compared to 17% of non-disabled people, had suffered unfairness, discrimination, bullying or harassment at work.

SLIDE: Hardest Hit

As a result of these barriers to employment, and barriers in employment, disabled people are more likely to be poor. The Life Opportunities Survey (Wave 1) found that households with a disabled member were twice as likely as other households to have great difficulty in meeting their usual weekly expenses. Remember, disabled people are also likely to have additional costs related to their impairment or illness.

Given that things like health and education and pensions have been protected, a large proportion of this government’s spending cuts have come out of the disability benefit and disability services budgets. The think tank Demos estimated that £9billion was taken out of the disability budget. Other measures such as the Bedroom Tax and the axeing of the Independent Living Fund have also disproportionately affected disabled people. This is why we hear the phrase “Hardest hit” being used by disabled people who protest the impacts of “welfare reform” and other government cuts. In 2012, Mrs Pat Onions started an e-petition on the Government website which was signed by 62,722 people and has since become known as Pat’s Petition. It was only one sentence long: “Stop and review the cuts to benefits and services which are falling disproportionately on disabled people, their carers and families”. I will come back to Pat’s Petition in a moment.

SLIDE: CRPD Cttee

The United Kingdom is party to the UN Convention on the Rights of Persons with Disabilities, and therefore is subject to the process of periodic review. The Government has to submit a report on how it is meeting the rights of disabled people, and will be coming up before the Committee on the Rights of Persons with Disabilities in the spring of 2015 to be questioned. Civil society is invited to submit a shadow report, and it will be very interesting to compare the government report with the parallel report submitted by the Reclaiming Our Futures Alliance of 10 disabled-controlled organisations.

SLIDE: How should we think about disability?

So, we’ve established that disabled people are disproportionately poor. They are subject to hate crime and domestic violence to a higher extent than non-disabled people. They face a glass ceiling. This is beginning to sound familiar to other equality struggles.

SLIDE: Proud Lion

The disability movement have followed a similar path to other disadvantaged groups, like Black and minority ethnic people, women, and lesbian and gay people. Often, in disability studies literature we read comparisons between disabled people and other disadvantaged groups in society. And there are certainly many many parallels.

However, I think that there are also significant differences, which make this is a slightly misleading analogy. Nobody in mainstream society would say that the reason why black and minority ethnic communities are poor is to do with any innate difference. Nobody would claim that women were inferior in capabilities to men. Most people would identify racism, sexism, misogyny and homophobia as the main obstacles to these disadvantaged groups.

The concept of disablism is increasingly used in disability theory, drawing the parallel with racism and sexism. And disability discrimination is certainly there, and we need to do more to counter it. However, I do not think that equal treatment will liberate all disabled people, in the same way as it has the potential to liberate other disadvantaged groups. I believe that a level playing field is not enough to equalize opportunity for disabled people. It may work for those disabled people who do not experience major limitations in their functional abilities, but it will not work for people with more significant or complex impairments. It won’t work for people with mental health conditions or learning difficulties, for example. Whereas for gender, race and sexuality, the main solution is to remove discriminatory treatment and prejudiced thinking, I suggest that this approach will not suffice to equalize the situation for disabled people.

Is the strong social model the best approach?

In my own research and analysis, I have disagreed with what you might call the “strong” social model of disability. Rather than the social model claim that people with impairment are disabled by society not by their bodies, I want to say that people are disabled by society and by their bodies.

I am not alone in thinking this. Disabled for Life?, a research project undertaken by the Department of Work and Pensions in 2003 found that found that 52% of DDA-defined disabled people did not define themselves as disabled people: young people were particularly likely to reject this identification. Of course this might indicate a reluctance to identify with a stigmatised social label, and an ignorance of the social model redefinition of disability. A 2002 survey of 200 disabled people conducted by the British Council of Disabled People found that only 3% of them had heard of the social model (Rickell, 2006).

So turning back to the 2009 British Social Attitudes Survey provides some interesting data which is relevant to this debate on the social model of disability. That survey did not use the term social model. Instead, it asked what people thought were the main problems facing disabled people.

Slide: graph

The traditional view of disability would be that it’s all about health problems. This is often called the medical model. Only 36% of non-disabled people believe that health problems are what prevent disabled people living a full life.

The social model view is that it’s all about attitudes and barriers in society. Even fewer non-disabled people – 17% of them – believe that this is the major problem.

The majority, 47%, believe that it is a combination of health problems, together with attitudes and barriers in society, which prevent disabled people leading a full life. So they agree with my analysis.

What about disabled people? We know that the radical wing of the disability movement absolutely disagree with me. They think it’s all down to attitudes and barriers, because they follow the social model. However, if you go out and survey the wider disability community, they don’t agree with the leaders of their movement. Only 15% of disabled people, according to the British Social Attitudes Survey, believe that the main problem is attitudes and barriers.

More than twice as many, 38% of disabled people, agree with me, that the issue is a combination of health problem alongside barriers and attitudes.

I was interested to see that the majority of disabled people, 46%, believe that health problems alone are responsible for them not leading as full a life as non-disabled people. So they’re actually much more likely to explain their disadvantage in terms of health problems than non-disabled people.

The 2007 Experiences and Expectations of Disabled People Survey (EEDP) for the Office of Disability Issues came out with similar findings. Of those disabled respondents who said they were not able to lead a full life, 87 per cent said it was because of their disability, only two per said that it was due to attitudes and barriers in society and 8 per cent said it was due to both (ODI, 2008).

So is the social model or the minority group model the best approach to disability?

The “Reclaiming our lives” alliance, who I referred to earlier, states upfront and proud that their Manifesto is based on a social model definition of disability. However, I would say that it is actually based on two approaches.

  1. Social model approach, in which people are disabled by society. The implication here is that it is discrimination, prejudice and lack of access which render people with impairments disabled.
  2. Minority group approach, in which disabled people are a specific subgroup, who deserve a bigger slice of the cake.

In fact, most of the demands in the Manifesto are for more state investment in the disability community. For example, one of the five key principles in the Manifesto is that “Disabled people must be provided with the support, assistance and equipment that will enable them to participate with other citizens (both disabled and non-disabled) on equal terms, and with equal opportunities, across all areas of life.” Later, the Manifesto says “Welfare support must be based on need and the recognition of the inherent value and human rights of every person; it must not be restricted or limited to those that are viewed as ‘deserving’ or productive.”

I agree with this approach. As I have said, I do not think it is enough to remove barriers. It is dangerous to suggest that if we have a level playing field, then disabled people will not need further assistance. I think it is necessary to provide the support which every individual needs to thrive. Remember those disabled people who worked part time, usually because of fatigue or other physical or mental symptoms. Think of those people with fluctuating mental health issues which make it very hard for them to work in a regular job, 37 hours a week, 48 weeks a year. Think of those with significant learning difficulties, who cannot work at all. All of these people, in a humane society, are entitled to have a good quality of life and reasonable standard of living. We need to take account of both the problems caused by impairment, AND the barriers imposed by social organization, and try and overcome those barriers and compensate people for the limitations which their impairment imposes.

SLIDE: Marx

This is the principle which Karl Marx outlined in his Critique of the Gotha Programme: from each according to ability, to each according to need. That was his definition of communism, of course, but I do not think it is a conception which any Christian should have a problem with, and I’d hope that most liberals would agree also.

SLIDE: Taking account of impairment

I want to give you two contemporary examples of why it is important to take account of impairment

First, the debate on labelling

SLIDE: Label jars

There’s a wonderful tee shirt, which I think came from People First:“Label jars not people”. This reflects a frustration with always being known as your diagnosis. When Nick Watson and I led a research project with young disabled people in the 1990s, our researchers kept on getting introduced to folks in terms of their conditions: “Meet Peter, he’s Aspergers”. One headmaster of a special school told us that when he started his career, he just had kids who were ESN or retarded. Now he had over 130 different syndromes in his school: same kids, just different labels.

In healthcare, it’s known as “diagnostic overshadowing”, where a doctor focuses on the primary health condition, and ignores the other general health needs a person may have. For this reason, progressive practitioners in social work and psychology, as well as education and disability studies researchers are always opposed to labelling.

SLIDE: Name

But I think this rejection of labelling can go too far. If we reject diagnosis, we fail to see the specificity of people’s needs. Getting a correct diagnosis can be liberating to a child and their family: it can be a passport to services and benefits. They can get the correct medical or educational interventions. If you are without a diagnosis, it is confusing and unsettling, which is why parents of babies with undiagnosed intellectual impairments feel much more stressed than parents of newborns with Down syndrome (Lenhard et al 2005). Ginny Russell and Brahm Norwich found that mothers of ASD diagnosed children were enthusiastic about the benefits of diagnosis (“Come on in, the water’s fine”). Sara Ryan has researched the diagnostic journeys of people with ASD and describes how this might mark “a radical redefinition of self, offering answers to longstanding social and emotional puzzles, tensions and difficulties experienced since childhood.” One respondent in her study said:

“I’d got that many labels shoved on me, I wanted the correct label […] I’ve had ‘stupid’, ‘thick’, ‘wierdo’. I’ve had all sorts, so I just wanted… if they were going to call me weirdo, then obviously I wanted the correct label to go with it, you know.”

So we need to assess need and use labels in a non-stigmatising way.

SLIDE: LB

This is where I want to remind you about Connor Sparrowhawk, a young man with autism and epilepsy who was known to his family and friends as Laughing Boy, or LB. Connor was the son of the researcher Sara Ryan, who I have just quoted. On 4 July 2013, LB drowned in a bath at Slade House, Headington, Oxford. He was in the “care” of Southern Health at the time. It appears that they had not adequately assessed his needs, because he had a seizure while unattended.
SLIDE: LB campaign

So we need to have a social care system which ensures that people with additional needs are not at risk of abuse, as at Winterbourne View, or death, as with LB. If we do not properly take into account people’s needs, they will suffer.

Second, the question of labour force participation

Campaigning against the government’s welfare reform agenda and Work Capacity Assessment, Pat’s Petition and CarerWatch have argued that not all disabled people can compete in the employment market place. Some people are limited in the type of work or the amount of work they can do – in the Life Opportunities Survey, this was reported by a third of people in work and two thirds of people out of work. Some people will never be able to work at all. Pat’s Petition and CarerWatch have said the following, in their response to the recent Labour Party statement on disability:

SLIDE: Elephant

We need to reclaim the idea that Impairment may actually Impair. Stop airbrushing this away as an inconvenient truth. And make sure that all government programmes take this on board and stop pressurising disabled people to do something they cannot do.” 

They call this the elephant in the room: something which people do not want to acknowledge. They feel that the social model approach, by concentrating on barriers, has downplayed the limitations that many people with impairments or chronic illnesses actually face.

So we need to have a welfare state which ensures that people are not rendered impoverished or unequal because they have greater needs than others.

Conclusion: What does equal participation require?

The problem of a level playing field approach is that it risks ignoring difference. Disability is different from other equalities issues, because in the case of disability, removing the barriers is not enough. I welcome the new language of disability human rights, enshrined in treaties such as the United Nations Convention on the Rights of Persons with Disabilities and the Equalities Act 2000.

SLIDE: Theresia

My colleague Professor Theresia Degener, who is both a law professor and a member of the UN Committee on the Rights of Persons with Disabilities, talks about the human rights model of disability. She distinguishes this from the social model, because she says that the human rights model can account for the additional needs that disabled people have. She writes

“Even in a society without barriers and other forms of discrimination, people need social, economic and cultural rights. People need shelter, education, employment or cultural participation. This is true for all human beings, and thus for disabled persons. However, because impairment often leads to needs for assistance, it is especially true that disabled persons need more than civil and political rights.”

We do need to create a level playing field, where disabled people can get around, and can have an equal chance of a job. But we also need to take individual needs into account. This is not about medicalization or special treatment, it’s about justice.

SLIDE: Michelangelo’s Aristotle

Remember Aristotle’s approach: justice consists in treating like cases alike, and unlike cases unalike.

Some people cannot work full time, or cannot work without additional support, or retire early, or cannot work at all. Working part time or retiring early renders an individual poor. Not working at all renders an individual poor, unless we have a benefit system which enables everyone to achieve a reasonable standard of living and quality of life.

Some people are at risk of drowning in the bath, if we do not adequately assess their needs and attend to those needs.

People with impairments and long-term illnesses are disabled by society, but they are also disabled by their bodies and/or brains. We need to meet civil rights, but we also need to acknowledge and respond to needs, which is what human rights demand. For example, reasonable accommodation or reasonable adaptation in the workplace, in education, in healthcare. We all have needs, but on average, disabled people generally have greater needs than non-disabled people. If we fail to meet those needs, as well as those rights, disabled people will always remain unequal in dignity and quality of life.

SLIDE: Thank you for listening
REFERENCES

Jones M, Wass V (2013) Understanding changing disability-related employment gaps in Britain 1998-2011, Work, Employment and Society 27, 6: 982-1003

Russell G, Norwich B. Dilemmas, diagnosis and de-stigmatization: parental perspectives on the diagnosis of autism spectrum disorders, Clinical Child Psychology and Psychiatry 2012b, 17, 2: 229-245

Ryan S, ‘I thought if I haven’t got Asperger syndrome, then there really is something wrong with me’: capturing the diagnostic journey of an autism spectrum condition, paper presented at the Nordic Network for Disability Research Annual Conference, 2013