Tom Shakespeare | ukwatch.net

An Old Word For a Growing Problem

Tim Holmes — Fri, 28 Sep 2007 08:39:32 +0000

In recent months, a series of deeply disturbing stories have hit the media. In each case, a vulnerable and lonely person is befriended and exploited by a group of people who proceed to torture him to death. The common feature of these horrific crimes was that the victim was disabled.
A policeman on guard at a crime scene

I admit, I was sceptical about the concept of hate crime against disabled people when it first began to be discussed a few years back. The research evidence was very scant, and I felt that the term “hate crime” was over-dramatic and risked creating unnecessary fear among disabled people. While black and ethnic minority people have always been vulnerable to racist abuse, and gay and lesbian people often the victims of homophobic treatment, it seemed to me that hatred of disabled people was a rare phenomenon. Disabled people will often be more vulnerable to crime, but this is usually impairment creating vulnerability and hence opportunity, rather than ‘disablism’ as the main motivation.

I still think we need to be cautious about exaggerating the situation. Actual violence, let alone murder, remains rare. The growing profile of attacks against disabled people may be more about the way these stories are reported in the media, or the increasing willingness of disabled people to report crimes carried out against them, rather than about any actual rise in the figures for such incidents.

However, perhaps something less dramatic, but more disturbing is going on. Over recent decades, society has become more individualist. Old values such as respect, deference and politeness have been eroded. People have more freedom, and feel less inhibited. Many people feel that they have a right to express any views they want, or make fun of anyone they want, perhaps emboldened by the way that the media and comedians make personal comments about celebrities or ridicule those who are eccentric or different. At the same time, we are less inclined to intervene when we see people being picked on or abused by others: it’s not our business, and we don’t want to become victims ourselves.

Another contemporary trend is the polarisation of society. All the research evidence shows that Britain is becoming more unequal. While many have seen their income and opportunities improve, others are stuck on welfare benefits or in dead-end jobs, unable to afford the consumer products and glamorous lifestyles which they see on TV or in the papers. Many young people in particular are alienated and excluded. Often, society’s ‘rejects’ resort to drink or drugs, making their behaviour even less restrained.
Police sign on top of a patrol vehicle

Perhaps these social and economic factors explain the current situation, where there is a small section of the population who take out their frustrations and resentments on the most vulnerable people in our society: disabled people, older people, and those from minority backgrounds. People who look visibly different, or who are struggling to live independently, are easy prey for this anti-social behaviour.

If this analysis is right, then I think we already have a good term for what’s going: bullying. In school, in the street and in the workplace, people who do not feel good about themselves can make themselves feel better by picking on someone else – someone who is a little odd or unusual, who is isolated already, or does not conform to the prevailing social norms.

Bullying is not rare at all, as all the evidence proves. It was a theme of the research my group did with disabled children in the 1990s. It was a theme of the research we have done with restricted growth people since 2004. And bullying is reported over and over again in studies of many different groups of disabled people.

On two occasions this year, I have personally experienced very nasty incidents which left me shaken and unhappy. Each time, a group of teenagers chased after me, and surrounded me, mocking me, making personal comments and taking photographs on their camera phones. I am not claiming to have been the victim of hate crime, and no physical violence was involved. But the experiences were very distressing, and made me feel powerless and unsafe. As a result, I feel more anxious using public transport, where these incidents occurred, and less likely to use it in future. I am used to being stared and laughed at, but these bullying incidents were a new and nasty phenomenon.

Hate crime, rare as it is, should perhaps be regarded as the tip of the iceberg. Of equal concern is the widespread experience of bullying and social exclusion which is usually unreported, but which makes many disabled people feel unsafe and unhappy. We need a culture of zero tolerance against abuse of disabled people in any form, and we need to take collective responsibility for inclusion. Of course, the police should take hate crime against disabled people more seriously. But parents, teachers, employers and even passers-by have a role to play too. Bullying is ubiquitous and it is getting worse. We need to stop it now.

Tom is a Research Fellow at Newcastle University. His non-fiction books include Genetics Politics: from Eugenics to Genome and The Sexual Politics of Disability.

Gis a Job

Tim Holmes — Wed, 16 May 2007 17:14:06 +0000

Somebody called me a cynic recently, a description to which I objected strongly. I’m a sceptic, not a cynic. A cynic believes the worst; a sceptic merely fears the worst.

One of the things about which I am sceptical is the Government’s Improving the Life Chances of Disabled People document, and the initiatives to which it has given rise. Many disabled people were thrilled when New Labour finally seemed to accept the social model of disability and prioritise the inclusion of disabled people. I wasn’t so sure. For many years, governments have been trying to save money by gettng disabled people off Incapacity Benefit and other expensive forms of social support. My worry is that New Labour’s disability rights rhetoric is a cloak for them squeezing entitlements, making life harder for disabled people who do not work.

With the Restricted Growth Association, last week my team launched “A Small Matter of Equality”, the report of a major research project exploring the lives of people with restricted growth, funded by the Big Lottery Fund. We were delighted to find that our respondents were generally successful in getting jobs, unlike other disabled people who are twice as likely to be unemployed as non-disabled people – 57% of restricted growth people had paid work as opposed to 61% of the general population. However, we were concerned that restricted growth people weren’t getting very good jobs.

Our respondents were less than half as likely to be in managerial jobs, and twice as likely to be in routine jobs – office work or shop-floor work. While they had excellent educational qualifications – as good as, or better than, non-disabled people – their occupational roles did not match their abilities or aspirations.

For example, we talked to individuals who had wanted to become teachers, nurses, or farmers. In each case, they had been discouraged and steered towards less stimulating jobs. This is despite the fact that we also found successful examples of restricted growth teachers – and nurses – and farmers. Lots of our respondents had been encouraged towards becoming nursery nurses, or classroom assistants, or clerks. We found one woman who was a special needs assistant, despite the fact she had a degree – probably the most qualified teaching aide in the country!

We began to suspect that a rather subtle form of discrimination was operating, where gatekeepers to employment felt that restricted growth people really were not capable of top jobs, particularly not jobs where they would be managing non-disabled people. Many people who responded to our research had gone for interviews, only to realise within minutes that they had no chance of being selected. And once employed, things were similar – one person had discovered that she was being paid at half the rate of the two non-disabled people she managed. When challenged, her employer said that no one else would give her a job, so she’d have to put up with it. Thankfully, this woman resigned immediately and got a better job within a week.

From talking to other researchers, I think the experience of restricted growth people is similar to that of other impairment groups: even when they do find work, the jobs they do are often low-paid and un-stimulating. Employers use excuses, particularly the old chestnut of “Health and Safety”, to justify not giving disabled people opportunities. Disabled people also seem to be steered away from training and promotion opportunities, particularly where these involve managing others. Many people are so glad to be in employment that they put up with not having a career.

Restricted growth people felt they had to work harder than non-disabled people to prove themselves capable, and many felt that they were over-qualified for the job they were doing. We found that the majority retired early due to poor health. This meant losing everything they had worked for, suffering a big drop in income and quality of life. If they were not in well paid jobs in the first place, the financial impact was correspondingly worse.

If we are really interested in improving the life chances of disabled people – as opposed to just saving the government money – then we should be as concerned about the quality of jobs that disabled people do as we are about the overall employment rate. It’s not enough to persuade employers or to give them pats on the back for tokenism – we need strong action to prevent discrimination and to ensure that disabled people have a true chance of a real career.

“A Small Matter of Equality” can be downloaded from http://www.restrictedgrowth.co.uk/

Disability Rights

Tim Holmes — Thu, 28 Sep 2006 19:07:48 +0000

Did anybody notice the anniversary on Wednesday 20th September? Thirty four years ago to the day, legendary disability activist Paul Hunt had a letter published in The Guardian, calling for ‘the formation of a consumer group to put forward the views of actual and potential residents’ of residential institutions, which he called ‘the successors to the workhouse’. His initiative led to the formation of the Union of Physically Impaired Against Segregation, who published their seminal manifesto ‘Fundamental Principles of Disability’ exactly thirty years ago this year. It was UPIAS who dreamed up the concept of the social model of disability, arguing that people were disabled by society, not by their bodies (although the name was first applied by Michael Oliver in 1983).

Many people see UPIAS as the pioneers of disability rights, and the social model as the key to disability equality. In some ways, 1976 has become the ‘Year Zero’ of disability politics. But I think this is a mistake, as I have argued in my new book, Disability Rights and Wrongs, published this month by Routledge. In fact, I think UPIAS took disability rights down a cul-de-sac, which we are still stuck in today. Because I doubt many Ouch readers will shell out £30 for an academic book, please forgive me if I spend this months column summarising my view.

As an organisation, UPIAS were hardly a role model. They modelled themselves on the revolutionary parties of the left. They practicised democratic centralism – in other words, once they had decided what the ‘line’ was, they expelled people who disagreed. The group was small, and dominated by men with physical impairments, which meant that they were not representative of the diversity of disabled peoples experiences. By 1976, their thinking had become polarised. And in the following decades, UPIAS ideas were interpreted in an even more rigid way. I believe that todays disability thinking is still contaminated by dichotomies which UPIAS invented: social model versus medical model; impairment versus disability; disabled people versus non-disabled people. And I think that if we are to move forward, we need to understand the complexities of identity and experience, and not stick to rigid ideologies.

UPIAS did not invent disability rights. They were certainly not the first people to understand that physical and social barriers, negative attitudes, discrimination and oppression were the major problems in the lives of disabled people. Plenty of activists and academics had reached these understandings well before 1976 – in America, in the Nordic countries, and in Britain itself. After all, in America, it was the 1973 Rehabilitation Act which first prohibited discrimination. It had been the activists in Berkeley who had first campaigned against barriers. And the National League of the Blind and Disabled were marching in Britain in the 1930s.

In Britain, UPIAS were only one among many emerging groups and networks in the seventies and eighties. Groups such as the Sisters Against Disablement, Gemma, and the Liberation Network of People with Disabilities often had a far more nuanced understanding of how disability affects individuals and society, influenced by the feminist idea that ‘the personal is political’. But UPIAS activists dominated the British Council of Organisations of Disabled People when it was formed in 1981, and their views have dominated the disability movement ever since.

Some activists and academics do not want to move beyond the ideologies which UPIAS pioneered thirty years ago. But I think while we should remember and celebrate people like Paul Hunt, we should be prepared to rethink everything. I would like to see a ‘post social model’ disability politics, where we could be more pluralist, and worry less about terminology or ‘disability correctness’. So what might this involve?

First, I think that neither the ‘medical model’ nor the ‘social model’ provide the whole picture. Disabled peoples lives are complex. Our limitations or difficulties of body and brain do cause us problems. Nobody wants their experience to be medicalised, but nor do we want to reject medicine. Equally, we want to challenge barriers and discrimination. In other words, people are disabled by society, and by their bodies. It is the interaction of individual factors – impairment, motivation and self-esteem – with external factors – the barriers, oppression and expectations and attitudes of other people – which combine to create the experience of disability.

Second, I think that identity politics is not the only answer. For many people, attending demonstrations and disability arts events is what its all about. But many, many more people with impairments do not want to identity as disabled. They want to get on with their lives, and to participate in the mainstream. The Disability Rights Commission has already recognised this: they dont talk about ‘disabled people’ anymore. They talk about ‘people with rights under the Disability Discrimination Act’.

Third, non-disabled people are not the enemy. Doctors, teachers, parents, and researchers do not have to be disabled themselves to be good allies or supporters. We want to get disabled people into positions of power and influence and visibility, but we also need to collaborate and form partnerships with non-disabled individuals and organisations, including government. Lots of us spend most of our time with non-disabled people. Many of us do not want to be separatist, and could not afford to be.

Finally, we have to recognise that the world has changed since 1976. For example, most special schools are very different from those that activists attended decades ago. Many disability charities have transformed themselves. Attitudes to disabled people and provision for disabled people have changed considerably. Slogans and ideologies which were created in a different world have less resonance or relevance in 2006. Of course there are still major issues and barriers to be overcome. Many disabled people are still living in poverty and are still excluded from the mainstream. But if our thinking and our activism is to respond to these challenges, we have to be forward looking and radical, not backward looking and conservative.

Keep Taking the Tablets?

Tue, 26 Jul 2005 18:43:46 +0000

Everyone knows that pharmaceuticals can have side effects.

For example, a sizeable minority of people are allergic to penicillin or to anaesthetics, coming out in a rash or even developing liver damage and other complications if they are wrongly prescribed. Approximately 15% of the population are allergic to one or more common drugs. More worryingly, 0.1% of hospital inpatients actually die as a result of adverse drug reactions. Many of the pills prescribed for the symptoms of mental illness have deeply unpleasant side-effects. And nobody should forget Thalidomide, which caused limb impairments in 10,000 babies worldwide in the late 1950s. It’s been estimated that adverse drug reaction is the fourth commonest cause of ill health in the US.

But there are some silver linings amongst all this gloomy data. The drug Viagra, saviour of middle-aged Lotharios everywhere, was discovered by accident: male patients who were prescribed Pfizer’s new angina drug – then known by the catchy label of UK-92,480 – reported that they were getting unexpected and stimulating side-effects in the trouser department. What their partners felt about their newly horny husbands is not recorded, but Pfizer realised they were onto a good thing, and the little blue pills have been boosting love lives – and profits – ever since.

A study in a medical journal this month highlights another unexpected drug side effect. Patients with Parkinson’s – which affects some 120,000 people in the UK – suffer from a lack of the neurotransmitter dopamine. This causes their characteristic tremors and rigidity. A class of drugs called dopamine agonists compensate for the lack of natural dopamine and reduce early symptoms. However, a team of researchers in Minnesota have now found that these drugs – particularly a type called pramipexole – also turn some patients into compulsive gamblers. In fact, they can become compulsive about lots of habits – not just gambling, but also drinking, eating and sex. All of which goes to make pramipexole sound like the ‘Seven Deadly Sins’ of side effects, and which is no doubt worrying puritanical Christians everywhere.

The big question is: how long will it take before these drugs are available on the black market? After all, every time I open my email inbox, people are trying to sell me human growth hormone, Viagra and numerous other dubious pills, not to mention rather more unsavoury medications such as Rohypnol. The latter, developed to treat insomnia but now notorious as a ‘date rape’ drug, has been implicated in a wave of sexual assaults over recent years.

Closer to home, the sad truth is that most drugs which we take regularly have more mundane side effects. Along with tens of thousands of other folks with osteogenesis imperfecta or osteoporosis, my partner uses alendronate to strengthen her bones. It appears to reduce fractures, but it comes at the cost of causing almost constant wind – fewer fractures, but more burps. And any of us who suffer regular pain know the perils of codeine – less aching, but more constipation. Meanwhile, the people who take cannabis to control their spasms or nausea risk encounter the notorious ‘munchies’ – that sudden craving for toast in the early hours.

Looking to the future, many medical researchers have pinned their hope on pharmacogenetics, which is the theory that understanding the genetic basis of drug action and reaction will lead to a new generation of ‘tailor-made therapies’. Rather than giving out generic treatments, which don’t help everyone and actively harm a minority, doctors will be able to test their patients before prescribing the precise pharmaceutical to help each individual. Well, that’s the concept. Whether the science works – and whether the drugs will be cost-effective – remains to be seen.

This month, the National Institute for Clinical Excellence is going to decide whether four new drugs for the treatment of Alzheimers can be prescribed on the NHS. Rivastigmine, Memantine, Donepezil and Galantamine may sound like characters in a sword-and-sorcery novel, but to people suffering from dementia, they are an effective treatment. But NICE says they aren’t value for money.

With powerful pharmaceuticals, the “can’t live with them, can’t live without them” adage seems particularly relevant. Every beneficial drug seems to come with its own unique – and sometimes comical – set of side effects. And each successful treatment innovation raises new questions about access, equity and rationing. The most disturbing statistic is that 90% of pharmaceutical research is conducted on diseases which affect 10% of the world’s population. This means that treatments for baldness and obesity may be just around the corner, while the global killers – TB, HIV, the Ebola virus – may have to wait a bit longer. The worst side effect of the big Pharma is injustice.

Tom Shakespeare is the Director of Outreach at the Policy, Ethics and Life Sciences Research Institute in Newcastle. His non-fiction books include Genetics Politics: from Eugenics to Genome and The Sexual Politics of Disability.

For Whom the School Bell Tolls

Alex Doherty — Wed, 29 Jun 2005 15:27:38 +0000

There’s a good reason why inclusive education is a principle central to the disability rights movement. Historically, disabled children were widely regarded as being ineducable, and many were incarcerated in segregated schools, where they received a second-class education. One of the landmarks in the campaign for inclusion was the famous report by the committee of enquiry led by Mary Warnock. It led to the 1981 Education Act, which established for the first time the importance of integrated education.

So Baroness Warnock’s recent about-turn has consequently dismayed campaigners and families. She apparently believes that the system of issuing statements of special educational need – which her own committee recommended – is “wasteful and bureaucratic”, while the policy of inclusion is a “disastrous legacy”. She is quoted as having said that statements were originally intended to be given to 2% of pupils, but that 20% of pupils now receive statements.

Conservative commentator Melanie Phillips promptly got stuck into the noble lady in her Daily Mail column, describing the inclusion policy as having “caused chaos and misery for countless thousands of children and their teachers and made many schools all but ungovernable”, while specialist help has been “all but destroyed”.

Meanwhile, the annual conference of a major teacher’s union, the NASUWT, has called inclusive education “a costly disaster”, which is too expensive and disrupts the education of “the majority of children”.

Given all this hysteria, perhaps it would be useful to have a quick look at the facts.

Warnock was either quoted inaccurately or made a major error on the statementing statistics. In 2004, slightly less than 250,000 pupils in English schools had statements, which represents approximately 3% of the total. That’s 3%, Baroness – not 20%. The total number has increased by just 1% since 1999. The vast majority of pupils who have special needs – a total of nearly 2 million – do not have statements. Poorer children are more than twice as likely to have special educational need as children who are better off.

Yet statements of special educational needs are a vital way to ensure that a child gets the support they need to flourish. And they are based on an important principle: whereas there is rationing in the National Health Service and in Local Authority needs assessments, educational statements are the one area of law where disabled people have the right to get the services to which they are entitled. So, if anything, more kids should get them!

Contrary to the impression given by Warnock, Melanie Phillips and the teaching unions, there has not been a huge trend away from segregated education into inclusive education. The number of children in special schools has remained remarkably constant, despite the best intentions of the 1996 Education Act, and the 2001 Special Educational Needs and Disability Act which strengthened the policy of inclusion. There were 98,240 children in the segregated system in 1997, and 88, 930 in 2004. It’s true that the number of state special schools has declined slightly – but now there are a few more independent segregated places.

And far from damaging the majority, the Department for Education’s circular on Inclusion and Pupil Achievement last year quoted research evidence showing that inclusion improves the achievement of all students.

So any moral panic about the danger to which inclusion exposes non-disabled children has no basis in fact. Warnock is wrong. Phillips is wrong. And the NASUWT are wrong. The best schools are developing imaginative and humane ways of including young people, and everyone benefits. Non-disabled kids grow up less prejudiced about disabled people. Disabled kids feel part of the mainstream, rather than a neglected minority.

Of course, some parents are concerned that their child is not getting the support they need. It’s true that, in some cases, education authorities have closed special schools and tried to force integration to save money, at the cost of vulnerable young people. And it would be wrong to attack the quality of education in many special schools. Those disabled activists who remember with bitterness the neglect and incompetence of their own school days may sometimes be out of touch with the quality of teaching and support in today’s special schools.

Contrary to the slogans of some campaigners, it’s my personal belief that we shouldn’t be demanding the immediate closure of all special schools. To me, it seems plausible that there are a very small number of young people whose special needs are better met outside the mainstream classroom. And there are many more whose transition to mainstream needs to be carefully organised, not rushed through on the cheap.

Warnock, Phillips and the NASUWT are part of an alarming backlash against the principle of inclusion. Rather than sitting on their laurels, parents and educators and disabled people must work together to defend hard-won gains and open up more schools to disabled children, following the lead set by the excellent Disability Equality in Education project and the Alliance for Inclusive Education. There’s no reason why the vast majority of disabled children can’t be educated alongside their non-disabled friends.

Today, a child given a statement of special educational need is more likely than ever before to be educated in a mainstream school. That’s exactly how it should be.

_Tom is the Director of Outreach at the Policy, Ethics and Life Sciences Research Institute in Newcastle. His non-fiction books include Genetics Politics: from Eugenics to Genome and The Sexual Politics of Disability. _

The Enemy Within

Mon, 28 Feb 2005 18:26:58 +0000

Everyone knows how keen the Prime Minister is on sorting out threats to the nation – Saddam Hussein, international terrorism, the war on drugs – and how much safer the world is thanks to his tireless work. But now the Government has turned to evils that lie closer to home. Good, honest, hardworking able-bodied people face a scourge which makes Saddam and Osama look like amateurs. We’re talking about all those naughty disabled people who will insist on claiming welfare benefits.

They’re the ones to blame for the rises in public spending and taxes. So the Government is going to take fearless action against that insidious ‘sick note culture’ that we’ve been hearing so much about just recently. After all, everyone knows that Incapacity Benefit is more addictive than heroin or crack cocaine: after a few weeks, you’re hooked, and if you’ve been on it for more than six months, you’ll probably be on it for life.

First, the Government’s going to deal with those evil dealers in benefits. By cutting off the supply of addictive payments at source, they hope that fewer people will become dependent. So Incapacity Benefit and Income Support for people unable to work will be phased out by 2008, to be replaced by two new benefits: Rehabilitation Support Allowance and Disability and Sickness Allowance. New claimants won’t be able to get onto these benefits unless they participate in interviews designed to get them off these dangerous payments and into work. In practice, this probably means that junior staff in Job Centres will be deciding on whether or not someone with complex health problems is fit to work.

We can only applaud the Government’s far-sightedness. After all, the existing benefits are so tempting to naive and vulnerable disabled people. Who wouldn’t want the weekly payment of £84.28 that comprises the average Incapacity Benefit? It’s so alluring, given that it’s one sixth of the average weekly wage.

Of course, this drastic action is fully justified. There are one million disabled people out there who want jobs and are able to work, so let’s not worry about the two million other disabled people who are unable to work due to pain or fatigue. And it’s so sensible of the Government to take the cheap option of restricting the supply of benefits; much better than actually doing something effective to help disabled people get into work. The UK comes fourth from bottom in the EU table of spending on labour market programs for disabled people as a proportion of gross domestic product. Government investment in disabled workers is only half that of countries such as Greece – and twenty times less than places like Sweden.

Second, the Government plans to make it much harder for people to get hold of these dangerous benefits by investing in new technology to help weed out welfare addicts. For example, last December, The Independent newspaper claimed that the Government had secret plans to introduce lie detector tests for Incapacity Benefit claimants, which would be used during telephone calls to discuss their application (further details from the Benefits and Work forum) without the claimants themselves heing aware of what was going on. Perhaps unsurprisingly, the Government was apparently anxious that news of its experiments with lie detectors should not be widely publicised. After all, careless talk costs lies.

Another exciting innovation is the Government’s proposed new “computerised Awards Management system”. This is intended to “provide structured, IT based guidance to decision makers at the point of need” – which is Civil Service jargon for “providing new excuses for challenging or denying DLA claimants in ingenious ways”. What the Department of Work and Pensions call “better decision outcomes” is, of course, jargon for “fewer claimants”. In the old days, there was a cumbersome Awards Handbook, which a civil servant had to leaf through to work out which impairments entitled people to receive benefits. The DWP has apparently now brought in computer giant IBM to help it develop an “‘Appeals Wizard’. Sadly, this is nothing to do with Gandalf, but everything to do with stopping disabled people successfully appealing against decisions not to award them benefits.

And the really cunning thing is that whereas in the past the criteria were written down in the handbook, which ordinary people at least had a chance of getting hold of, they will now be embedded in software, which is conveniently exempt from the Freedom of Information Act. So we’ll all have to guess the right answers to the questions in order to get the support to which we are morally and legally entitled.

But I know what you’re thinking. You’ve listened to the political speeches, and you know what an evil cynical world it is out there. For years, those nasty disabled people have been claiming payments to which they aren’t entitled, and if it goes on any longer, they’re going to swamp all the good, law-abiding, hard-working citizens of this fair land.

Well, no, actually. Despite all the talk of ‘sick-note Britain’, the number of people in receipt of Incapacity Benefit or Severe Disablement Allowance fell from 2,099,800 in May 1997 to 1,782,100 in May 2004, which represents a decrease of just under 318,000 people. Furthermore, the government’s own official review of Incapacity Benefit found that the level of fraud was less than 0.5% (figures from the Trades Union Congress Defending Incapacity Benefit document).

But as we know, it’s the spin that counts, not the reality. Both Labour and the Tories are committed to cost savings and tax reductions. And scapegoating disabled people is one of the easiest ways of doing it.

Thanks to those nice people at Benefits and Work for the research underlying my column this month.

Tom is the Director of Outreach at the Policy, Ethics and Life Sciences Research Institute in Newcastle. His non-fiction books include Genetics Politics: from Eugenics to Genome and The Sexual Politics of Disability.

Sexual Isolation

Thu, 10 Feb 2005 21:44:09 +0000

Ten years after Kath Gillespie Sells, Dominic Davies and I started the work which led to The Sexual Politics of Disability (Cassell, 1996), it’s good that Disability Now have launched their sex survey.

But it’s sad that a survey is needed at all, and that the problem we identified – that it was not ‘how to do it’, but ‘who to do it with’ – hasn’t gone away.

There have been some feisty films about disability and sex, and there are some full-on role models, but many disabled people are still excluded from intimacy and relationships.

The contemporary world is obsessed with sex. Glossy magazines pump out images of toned, tanned and buffed young bodies while reality TV shows get ever more raunchy with each series. All this makes it much harder to feel desirable as a disabled person and highlights what we are missing.

Many of the people we interviewed for our book reported good sex lives. They had positive self images, and challenged stereotypes. But others talked about their loneliness. Independent living may offer more choice and normality than residential care, but living collectively offers a ready-made social life.

Wider research shows that certain groups of disabled people are particularly vulnerable to isolation. For example, people with severe mental illness are three times more likely to be divorced than the general population.

Older people may become disconnected from their community and abandoned by their family. Many disabled children spend their time with adults, sometimes lacking a single non-disabled friend of their own age. Teenagers with impairments often feel unattractive, and may fear that no one will ever love them.

I found adolescence very hard emotionally. All around me, non-disabled friends were boasting about their conquests. I had a series of crushes. Love was always unrequited. It wasn’t until I got to college that romance blossomed.

Neither service providers or the movement have done enough to support friendship, let alone sexuality, despite the importance of intimacy to most people. The myth that disabled people are asexual remains powerful, and authorities worry about vulnerability to abuse or encouraging inappropriate behaviour.

The movement has prioritised public goals – independent living, anti-discrimination – over private fulfilment. It can be challenging to explore personal issues, and painful to acknowledge absences.

Our book talked about sexuality as a disability right. By this, we meant that disabled people should not be denied access to sex; that they should receive proper sex education; and that they should be able to access bars and leisure environments. But even after the barriers have come down, there’s no guarantee that disabled people will get the lover of their dreams. Who do you turn to, if you can’t get laid, or have no friends?

Of course, it’s not just disabled people who have trouble with love and loneliness. From Bridget Jones to Adrian Mole, the goal of finding Mr or Ms Right, and the difficulty of doing so, is a contemporary obsession. Once, life was stable, jobs were for life, community was real and families were forever. Nowadays, people are independent, mobile, competitive, unattached and free to choose. And we spend forever moaning about how unhappy we are.

Many find a way forward through joining a group. Disability rights groups, self-help groups, sports clubs, and churches all offer spaces to make friends and form networks, alongside their explicit campaigning, health or spiritual roles.

For others, the internet has opened up a new vista of long distance flirtation and online dating. Some find companionship through personal assistants, or work colleagues. But too often the disability world seems harsh and unsupportive, as if to acknowledge our emotional needs and vulnerabilities would be to admit defeat.

A first step would be to recognise and encourage the role of groups, projects, meetings and online forums in providing peer support, contacts and company. Another would be to prioritise work around self-esteem. Confidence and communication skills are key to connecting with friends or potential partners, and disabled people may lack both.

Disability politics might have moved us from shame to anger, but neither emotion helps people break out of isolation. Rather than separatism, we should look outwards to non-disabled people as allies, helpers, relatives and friends.

Get the companionship and intimacy right, and the sex will look after itself.