Disability | ukwatch.net

Court decides to electronically tag dementia sufferer

JamieSW — Sat, 09 Aug 2008 16:32:34 +0000

A Scottish judge has ordered a dementia sufferer to be electronically tagged. Lord Matthews ruled that Edward Flaherty, who killed his wife in an incident of which he has no recollection, be confined to his tower block flat in Glasgow’s east-end.

The case exposes the brutality and callousness with which the Scottish legal authorities treat vulnerable people.

Flaherty, a pensioner and retired scaffolding worker, was convicted of strangling his wife Ina with a tie in April last year, after she refused to give him money to go back to the local public house where they had both been drinking.

The 74-year-old Flaherty, the Glasgow High Court was told, had developed an alcohol problem since retiring and was also seriously mentally ill due to his degenerative mental condition.

A medical report prepared for the court noted that at one point, Flaherty claimed he had killed his sister because she was being cheeky. On another occasion, he took a train to Bristol, 385 miles away, arrived not knowing where he was and had to have money forwarded to pay for his return. He thought the current US president was Richard Nixon. He has had three heart attacks and will ultimately require 24-hour-a-day care.

When he gave evidence, Flaherty accepted that he must have killed Ina. He told the court, “It must have been me. There are no ghosts running about the house who would have done that.” He denied a suggestion from the prosecution that he “blocked” memories of the killing.

Members of the jury wept when Flaherty told the court that his 52-year marriage with Ina had been “strong and firm.” They had never once struck each other. Medical reports on Ina explained that even slight pressure on her neck could have caused death because the 69-year-old woman’s arteries were badly furred.

The jury found Flaherty guilty of culpable homicide, a charge to which, according to the defence, he was always willing to plead guilty. The Crown, however, had sought a murder conviction and the ordeal of a trial.

Flaherty’s terrible circumstances are an expression of the routine, widespread and deliberate neglect of vulnerable older people, particularly those struggling to cope with appalling consequences of dementia. There are estimated to be between 5,776 and 6,475 people with senile dementia in Glasgow City alone, the vast majority over 65. Some 700,000 sufferers are estimated across the UK, with numbers expected to rise as the population ages.

In addition to memory loss and confusion, the complicated condition, mostly Alzheimer’s disease, which is associated with a progressive loss of neurons, can dramatically affect behaviour. Each sufferer of dementia is affected in a unique way, as skills and abilities taken for granted become compromised and inhibitions can disappear, for example.

To the extent that an individually tailored and comprehensive support regime is not available for sufferers and their families, which is frequently the case, the disease can place a huge burden on those closest to the patient. This is in addition to the emotional strain on all concerned of seeing a loved one decline.

Flaherty’s drinking is also part of a far broader trend of endemic alcohol abuse. Some 789 people died from alcohol-related causes in the Greater Glasgow and Clyde area in 2005. Across the UK, the figure was 8,758 in 2006. Figures between 1998 and 2004 suggested that 15 of the top 20 greatest concentrations of alcohol-related deaths were in Scotland.

All this was lost on Lord Matthews, whose sole concern was to punish the retired and ailing worker in a manner that did not place any burdens on the prison system.

Lord Matthews informed the court that in normal circumstances “this would attract a prison sentence in double figures.”

He went on, “It is plain to me that…you would be released in a very short time because prison would not be able to cope with your condition. Sentencing you would just be a token gesture. I am anxious to impose a sentence that restricts your liberty.”

The judge concluded that a “more meaningful” punishment would be to electronically tag Flaherty, and to ban him from leaving home between the hours of 11 a.m. and 11 p.m. This would prevent Flaherty from attending the local pub.

Having deprived Flaherty of what is likely one of the few sources of social contact available, Lord Matthews made no attempt at all to ensure that Flaherty received the care he so desperately needs. Instead, Flaherty has effectively been curfewed to his isolated flat in one of the poorest areas in Britain.

Tories and New Labour go after the disabled.

JamieSW — Tue, 08 Jan 2008 18:47:01 +0000

The Tories claim they could get 200,000 people off incapacity benefits by requiring recipients to prove they can’t work and reducing entitlements. In light of New Labour’s goal of getting a million people off incapacity benefits by 2015, this seems small pickings. No wonder Labour accuses them of stealing their ideas (in reality, Labour has simply taken over old Tory policy nostrums). But, setting aside the rank authoritarianism and vindictiveness of such crackdowns, how achievable are such aims? The November edition of the Cambridge Journal of Economics, which is focused exclusively on New Labour’s economic management, deals with this question. Since the claim is that this number of people can be moved into work, the obvious answer would appear to be ‘no’. That New Labour has reduced the claimant count is without doubt, and while some of it is due to macroeconomic trends, it seems likely that much of it is due to reduction in access to benefits (‘welfare reform’) given the massive gap between the official unemployment rate and that registered by the ILO.

Cuts, interrogations, ‘support’

In this context, incapacity benefits refers to a wide range of receipts. Incapacity Benefits proper are received by 1.4m people; national insurance credits for incapacity by 1m; and Severe Disablement allowance by 0.3m. There are a further 0.3m on Disability Living Allowance who are not included in the overall count. The IB claimant counts are highest in the older industrialised areas of the north, and two areas in Wales have IB claimant counts higher than their working age population. This is associated historically with mass redundancies in the former mammoth industries of coal and steel. Claimants tend to be older, and male – perhaps in part because women receive pension at 60, while men don’t receive it until the age of 65. There has already been a reduction in claimants registered in 2004, for the first time in a generation, and if this were to hold, then the reduction by 2015 would amount to 200,000. On the other hand, population dynamics could see trends in the opposite direction – if IB claimants over fifty increase by the same rate as the over-fifty population, then the overall count will have 115,000 added to it. Overall, regardless of policy, the current flows extrapolated to 2015 would add 67,000 to the count. And, since women will have their pension age revised upward to 65 by 2020, the claimant count would be increased further.

In theory, there are enough ‘hidden unemployed’ in the IB claimant figures to reduce them by one million. The government’s proposed measures for dealing with this include precisely those recommended by the Tories – introduce compulsory work-focused interviews with the intention of sorting out those who can work from those who cannot. The benefit will be phased out for all but the most sick or incapacitated and replaced by Employment and Support Allowance, with a strong element of conditionality – recipients must accept forms of training and education designed to get them into work, for face financial penalties. And until they receive their Personal Capability Assessment, claimants will receive exactly what they would on the Job Seekers Allowance (presently £59.15 per week for a single person over 25), thus removing a financial incentive to claim incapacity benefit (£61.35 for short-term incapacitated; £72.55 from weeks 29 to 52; £81.35 for long-term incapacitated) – actually, as you can see here, the financial incentive is initially tiny. Only those expecting to be on IB for a long time would expect a financial benefit from it. That is why one of the government’s other proposed measures is to remove the escalation after six and twelve months. They also intend to ‘support’ GPs in ‘helping’ people return to work – I suspect this will amount to target-based pressure to force people into accepting work. The journal’s research suggests that even these stern measures will not reach the government’s target – at best, they might remove half a million from the count by 2015, which means that they would have to find a way to double the impact of their existing measures. Most of the reduction would have to be in those areas mentioned earlier – old industrialised parts of the north with high unemployment.

Neoliberal justification

The dogma underlying the government’s approach, which justifies it in its conviction that it is assisting the poor, is the view that “supply creates its own demand” – an extra labour supply will produce higher employment. The market will, on this view, bring demand and supply into balance through wage adjustments (reductions). For this to work, there needs to be maximum flexibility in the labour market (hence, diminished bargaining power for labour, the curtailment of rules protecting job security and so on). As the authors of the journal article point out, it is just not the case that markets automatically balance supply and demand. The effect of these policies will be to increase the official rate of unemployment – only in regions where there is close to full employment already and labour shortages in specific segments to boot will there be the effect the government imagines. That is, in precisely those areas where the IB claimant count is lowest. Given the emerging economic difficulties, the period of sustained employment growth looks like it is coming to an end, and even after recovery it may be difficult to repeat. Further, while the government claims to target those who are not severely disabled and can theoretically do some forms of work, those with enduring health problems are not well-placed to thrive in even a tight labour market.

The policies proposed by both parties are in effect detrimental not only to those claiming IB benefits, but also to the working population as a whole, who are expected to accept reduced wages and security in the government’s model. By no means likely to increase employment and tending to reduce the dignity and conditions of those currently on disability benefits, the government’s policies will – if they are permitted to get away with it – be able to reduce the size of the welfare state. And that, of course, is what it is all about. The global roll-back of the rights and protections secured by past generations of working people is not passing without resistance. The government’s policies on welfare, including cutbacks of pensions, are deeply unpopular. Privatisation of provision is hated. And the congruent process of effective wage cuts and diminishing conditions and entitlements is producing industrial resistance. The barrier such resistance repeatedly hits, as Mark Serwotka recently pointed out, is the commitment of union leaders to the Labour Party. That loyalty is coextensive with profound resignation in the face of the neoliberal assault, a willingness to negotiate away even the most basic forms of protection, and an unwillingness to risk sustained confrontation with the government. Even if the Tories get in and implement the same policies more aggressively (that may be hard to imagine, but they almost certainly would), the union leaders will say “we can’t afford to embarrass our party, we must ensure they get elected next time round”. The only way out of this is for union members to: a) build up rank and file organisation to resist union leaders when they call for acquiescence, as in the recent postal strike; and b) make a sharp break with New Labour, forcing through an independent political fund as the basis for political realignment.

The Hidden Costs of Going Back to Work

Tim Holmes — Sat, 22 Dec 2007 09:04:01 +0000

So once again the Government has announced plans to overhaul the benefits system to get people on Incapacity Benefit (IB) back to work, this time through a move to “employment and support allowance” which positively focuses on “what people can do rather than what they can’t”. But despite all the recent hoo haa about the 50 people with acne and those with nail disorders and the 400 people “too fat” to work, the group the Department of Work and Pensions really want to get off their books is people with mental health problems.

A glance at those books tells you why: mental health problems are costing the Government £2 billion a year in Incapacity Benefit, a hefty proportion of the total £12.5 billion they pay out.

It’s not that those with mental health problems are shirking, campaigners insist. “People who have experienced severe mental illness have the highest want-to-work rate of any disability group, but have the lowest in-work rate,” says Jane Harris, head of campaigns at Rethink. She points out there are two likely hurdles: the unwillingness of employers to take on people with mental health problems; and the hidden costs of going back to work.

In trying to gain support for the new changes to IB, government has been briefing that getting off benefits and back to work will swell your bank account as well as increase your sense of wellbeing. But we are unable to look at government profiling to see how they have worked these figures out and for whom it applies.

Other government figures are freely available to look at.

Harris says that though government publishes annual tax benefit model tables that show the relationship between incremental wage increases for lone parents, for example, they don’t do this for people with disabilities.

We spoke to the Department of Work and Pensions (DWP). They told us that to publish model tables for people on disability benefits would be too complicated because of the number of scenarios that would need plotting.

The published tax benefit model illustrates the effect on net income of gross income, rent, marital status, number of children, tax credits, tax and National Insurance Contributions, they explained. “A model that looked at disability benefits would be a very complex table as there are so many factors involved in working out an individuals’ entitlement. For example, not only would it have to take into account the information that is contained in the current model but it would also need additional information such as: type of disability, length of time on benefit, type of disability benefits customers are in receipt of, what rate of benefit they are in receipt of i.e. higher or lower.”

While the DWP have pledged long-term Incapacity Benefit claimants will be at least £25 a week better off in work, this figure may cover little more than the travel costs that they will now incur through being off IB and in employment. But employment brings more costs than that, costs that could ultimately prove dangerous to people with mental health problems.

We spoke to people with mental health problems who have gone back to work. They told us that they had been taken aback by some of the expenses they now had to pay as a working person such as exercise costs, school meals, talking therapies and prescriptions.

Kay

“When I came out of hospital I was on four different meds,” says Kay, a woman with bipolar disorder. “Because I was seriously depressed, I was only given two days of some medications at a time. Everyone assumed that I would be on benefits, but I wasn’t so I was paying a fortune for prescriptions.”

Those in the know can buy a pre-paid prescription card for just under £100 a year or about £27 for three months, which covers unlimited prescriptions. But most people aren’t aware of this, and continue to shell out £6.85 an item when they start paying for medication.

“Nobody told me that I could pay a set amount up front – not my psychiatrist, not the pharmacist,” Kay told us. “I don’t think the doctor knew. No one in the mental health system expects you to be paying, they blithely make the assumption that you can afford to keep taking the pills.” She points out two ironies. If she hadn’t taken the medication she would have been back in hospital where it would have been free, and if she had epilepsy, the other condition treated by the same medication, she wouldn’t have paid for the pills.

Sara

This woman of 35 who also has bipolar and works full time despite a number of episodes in hospital, also paid for her prescriptions until she was diagnosed with a thyroid disorder. When the pharmacist told her she no longer had to pay for medication she was pleased but also furious. “Why should people pay for prescriptions for mental illness when you don’t have to pay for other conditions? Why is something physical worth paying for, but mental health isn’t?”

Sara is still doing the sums over what medication has cost her in the decade since she was diagnosed.

It is not surprising then, that some people throw the prescriptions away. Research carried out by the Citizens Advice Bureau in 2001 found that 50 of their clients paying prescription charges had difficulty affording them and 28% failed to get all or part of a prescription dispensed because of the cost.

Increasingly the Government will offer short-term talking therapies for people with minor mental health problems to enable a swift return to work. But those with ongoing mental health problems will often need longer-term therapy, and while this might be available on the NHS, it is almost exclusively within normal working hours. As it is difficult to take time out of the working day for ongoing talking therapy, people either quit or find themselves paying for private therapy out of hours at a ballpark £30-40 a session.

Julian

This was the case for Julian who was discharged by his Community Psychiatric Nurse when he returned to work. Once back, he found himself more vulnerable and in need of someone to talk to, so now pays £30 a week for counselling sessions. “I find I need more support now than ever before, but I’m more likely to skip appointments with my shrink as well, because if there’s an important meeting at work it’s easier to cancel the doctor than make an excuse to my boss about a therapy session,” he says.

Julian swims and works out at a local leisure centre as he finds exercise helps to keep his depression at bay, but no longer gets a discount. “I pay about £30 a month more than when I was on benefits,” he says. “It might have been less if I could use the gym off peak, but that’s the thing about going back to work – every bit of help or discount is geared towards people who don’t work.”

he has a prescription card but calculates the price of going back to work will be around £2000 this year.

Andy Bell, head of public affairs at the Sainsbury Centre for Mental Health, says that services must stop being “predicated on the notion that you are out of work”. “If you support someone when they are out of work and forget about them when they get back to work there’s a chance they will fall out of work again,” he warns.

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/

Ain't Misbehavin'

Tim Holmes — Thu, 08 Mar 2007 21:38:50 +0000

Over 30% of youths receiving ASBOS have a diagnosed mental health disorder or an accepted learning difficulty

BIBIC (British Institute for Brain Injured Children) has criticised the government’s policy on issuing anti-social behaviour orders without first carrying out an assessment of the young person. BIBIC carried out a survey of ASB officers and youth offending teams for the BBC and discovered that over a third of under-17s issued with ASBOs have a diagnosed mental health disorder or an accepted learning difficulty.

The survey demonstrated a huge difference in recognition of the youths’ learning difficulties. Anti-social behaviour officers look at the individual cases and produce the order. They reported 5% of their youth cases had special needs or a learning difficulty. This compared with 38% reported by youth offending team officers who had seen conditions that included autism, ADHD, moderate learning difficulties, and emerging personality disorders, depression and self harming. They estimated that 6% had a mental age of less than 10 years old.

Julie Spencer-Cingoz, chief executive of BIBIC says “Not understanding the underlying difficulties of so many of the young people has meant they have been given orders that they do not understand and cannot keep. Without specialist help they are being set up to fail, and a breach of an ASBO is a criminal offence. This is the wrong way to be treating vulnerable young people. Early intervention is a more sensible approach to prevent major problems emerging. ASBOs are failing both the young offenders and the communities they are supposed to protect.”

The Home office is saying that they have not received any case studies from charities but BIBIC sent details of cases over a year ago and re-sent them only one month ago. That said, it is not for charities to do the government’s work which is to monitor their policies for issues concerning disability. Charities are able to raise the question and alert the government to concerns, but ultimately it is their responsibility to do the monitoring.

BIBIC started the Ain’t Misbehavin’ campaign in 2005 to draw attention to changes needed in the system and to launch a training programme for professionals working with youths with challenging behaviour. BIBIC has also been on hand to assess children and support families being drawn into the criminal justice system when their child had never committed a crime.

Click this link to view BIBIC research on ASBOs and young people with learning difficulties and mental health problems.

Extraordinary Television?

Tim Holmes — Wed, 28 Feb 2007 11:59:37 +0000

In recent years, documentaries about individual disabled people have become something of a phenomenon. The TV schedules are now packed with programmes focusing on every type of impairment imaginable – a digital freak show for the 21st century that can be visited without leaving your living room.

Whereas other social issues get the in-depth investigation of a “Panorama”, or a “Tonight with Trevor McDonald”, the public’s grasp of disability issues is typically informed by documentaries focusing on an individual disabled person who, more often than not, could not be said to be very representative of the rest of us. Moreover, an unfortunate fact of life is that the sort of documentaries we would want to see – ones where disabled people aren’t ‘extraordinary’ but competent, capable and in control – do not make as sensational, entertaining viewing as the ones we’re now used to watching.

During these programmes I often find myself screaming at the TV: “Where the hell do they find these people?!” I suspect that someone somewhere has set up an agency called Rent-a-Freak, specifically to supply the most bizarre, eccentric disabled people they can find to budding documentary makers. But unlike today’s documentary subjects, the freaks of old were at least paid to take part – and had some say over their performances.

A few weeks ago the Ouch Weblog reported a mighty clash of two documentary series on Monday nights at 9 o’clock, with Channel 4 screening “Extraordinary Children” opposite Channel 5’s “Extraordinary People”. One programme in the Channel 4 series, “Aged 12 And Looking After the Family” (shown 5 February), generated a huge furore amongst disabled people. It focused primarily on the lives of two ‘young carers’ who were filmed performing a number of household tasks for their visually impaired parents.

As a disabled parent myself, I’ve always had a problem with this idea of ‘young carers’. To me, it conjures up visions of the comedy Absolutely Fabulous, which featured Edina’s reversed mother/daughter relationship with her teenager Saffron. Disabled people find it hard enough to be taken seriously as parents without similar assumptions that our children are somehow responsible for us.

After the documentary was shown, listeners of Radio 4’s “In Touch” programme complained that it was “a terrible slant on blind parents” and “will only make the general public’s perceptions of what blind people can do even worse.”

Paul, the visually impaired father featured in the documentary, spoke to In Touch about how he was now “frightened to go out” because of the amount of hate e-mail he and his wife had received. Not surprising really, since my cursory Google search found a number of message boards containing demands that his children be taken away from him. He went on to say that he’d have never done the documentary if he’d known how his family would be portrayed.

This really struck a chord with me as, about a year ago, my wife and I spoke to a production company about the possibility of taking part in a documentary about disability and parenting. The title of the programme was to have been…

...go on, have a guess…

...yes, you’ve got it – “Extraordinary Mums”!

We were filmed for an afternoon in our home, playing with our son Tom and talking about being parents. Tom is quite a boisterous child and enjoys being bounced around. With hindsight, I shudder to think how footage such as Tom jumping off our sofa onto my knee could have been used. A subtle bit of editing… a severe camera angle… some mournful violin music… and all of a sudden a happy, playful scene becomes that little bit more sinister.

The problems arose when we talked about our input into the finished programme. We both had fears of being portrayed as the stereotypically tragic, brave parents struggling to bring up a child against a cruel act of fate which left us disabled. And if someone was going to broadcast an intimate portrait of our family life on national television then it seemed reasonable to want a say in how it turned out. Well, wouldn’t you?

But it soon became clear that we would not be allowed the level of control that we wanted, so we backed out. Indeed, with hindsight, I think it’s a mistake to view these documentaries as simply presenting people’s life stories, as is so often thought. As with any other piece of art, the outlook of the creator will inevitably shape the finished piece.

So if any Ouch readers are approached to take part in an ‘extraordinary’ documentary, my advice would be to think long and hard first. Give the production team a thorough grilling to make sure you understand and agree with what they are trying to show in their programme.

Because otherwise you might not like what ends up on television.

Ouch!

mboes — Wed, 31 Jan 2007 13:04:31 +0000

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mboes — Wed, 31 Jan 2007 13:04:31 +0000

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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.

The Cost of Living

Tim Holmes — Tue, 23 May 2006 16:41:56 +0000

At a conference last month, I had the dubious honour of sitting on a panel next to John Hutton, the Secretary of State for Work and Pensions. After he spoke on the forthcoming Incapacity Benefit reforms, the floor was opened for questions. A guy with Cerebral Palsy asked the question at the forefront of my mind:

“How on earth can disabled people be encouraged to take up employment when, once in work, they may face a bill of up to £200 per week for community care charges?”

‘Care charges’ are the contributions that disabled people have to pay if we need assistance with everyday tasks like washing, dressing, or eating a meal. Mr Hutton repeated the classic mistake made by many a politician when faced with a question from someone with CP – he pretended he’d understood what they’d said, when in actual fact he hadn’t. So he ended up giving a completely irrelevant response and hoping that nobody would notice.

Abusing my position, I butted in to remind him that he had actually been the minister responsible for introducing the current guidance on charging. Taken aback, he threw me a look of pure contempt, obviously unused to such a lack of camaraderie on the part of a fellow panellist, and replied that this did not fall under his current jurisdiction.

Maybe he was thinking back to his speech in Parliament in 2001 on making funding fairer, supporting carers and avoiding putting disabled people into residential institutions? At the time he stated: “I do not believe that making personal care universally free would help us in achieving any of those objectives”. It’s somewhat ironic that the person who introduced the current system for charging – in my opinion one of the biggest deterrents for anyone considering employment – has now been put in charge of getting more of us into jobs!

The current guidance, ‘Fairer Charging’, is a contradiction in terms if ever there was one. It states that charging should avoid creating disincentives to work by disregarding people’s earnings. Instead, social security benefits such as Income Support should be used to decide whether someone pays. But of course, entitlement to Income Support is based on people’s earnings. This is what is known as Sir Humphrey Appleby logic!

It was once estimated by the national ‘Coalition Against Charging’ that up to 40% of the money we pay in care charges is spent on administration. In other words, a significant proportion of our contributions go to pay the council employees to carry on collecting our contributions. Never mind the Sir Humphrey Appleby logic – It’s even starting to sound like a plot from the sitcom Yes Minister, isn’t it?

Worse still, if disabled people living in a residential institution decide to work, they are only allowed to keep £20 per week as the rest of their income must be directed towards the cost of keeping them there. It makes no difference whether they’re on minimum wage or earning more than the cost of their fees – twenty quid is all they get!

Nowadays we’re constantly getting reminders of the importance of saving for retirement. But for disabled people in my position, getting a savings account is the quickest way to a £200 bill landing on your doormat every week, since savings over a certain limit must be taken into account. Fairer charging? My arse!

Whether or not someone gets charged boils down to whether their primary need for assistance has been assessed as a health need or a social need, since healthcare is free but social care costs can be passed down to us. This is a completely artificial distinction. Personally I couldn’t give a monkey’s toss whether my needs are health or social; the fact remains that I need assistance to live independently and don’t see why I should have to pay for it!

At the start of this year a study of the Scottish system of free social care was published, showing that its replication in England, Wales and Northern Ireland would be both affordable and beneficial to disabled people, particularly those with low incomes.

Yet in February, the Welsh Assembly Government abandoned their 2003 election manifesto pledge of ending charging in Wales. According to BBC News, they blamed legal issues over definitions of the words “free” and “disabled”. How exactly can you misinterpret “free”?

A Bill Too Far

christian — Thu, 13 Oct 2005 09:04:47 +0000

I was on a train in Northern Ireland with my loved one a couple of weekends ago, coming back from a delightful few days by the seaside at Portrush. We were watching the countryside go by when a six or seven year old girl next to us started to sing.

Annoying as it was, we tuned out until a lyric about “lunatics” made us both look up. We exchanged secret smiles – how amusing that she had no idea she was sitting next to two of them.

Sticking to her theme, she then segued into the next rhyme: “Make the loonies take their pills, take their pills, take their pills … Lock them up in Holywell, Holywell, Holywell”. No prizes for guessing that Holywell was a local asylum, now a psychiatric hospital.

There was no malice in her song – it could have been Ring-A-Ring-O-Roses (that other great illness-related nursery rhyme). It must be some sort of school playground number, and her parents were oblivious to the lyrics – until I walked over to speak to them.

“I have a mental health problem and I’m finding your daughter’s song offensive,” I said politely.

“What?” they said … so I raised my voice and repeated it.

The kid shut up and the parents looked at the floor. They got off at the next station, but I like to think they were going to anyway.

Two days later I had to debate with Health Minister Rosie Winterton at a fringe meeting at the Labour Party conference. I was there to draw attention to the Mental Health Bill that we all abhor. The Bill is all about forcing people to take medication while living in the community, and indefinitely locking up people who, it is considered, MIGHT commit a crime.

I started scrawling pre-conference notes on the train down to Brighton, and thought how clever it would be to start with this story. And so I did, with great passion and to a spontaneous round of applause. It’s just a shame that the Minister wasn’t actually there to hear it; Gordon Brown had decided to launch his leadership bid at the same time as our meeting.

The Minister did arrive an hour and a half late (amazingly the audience endured), but by then my energy was spent and it was too late to use the other line I’d been saving up. The government keeps acknowledging that mental health is the ‘Cinderella’ of the NHS. I’ve had enough of that statement, I was prepared to rage, because this Bill ain’t Prince Charming’s glass slipper and there is no fairytale ending.

What we’ve got instead is the makings of a mental health system that is about coercion, not about care, and decent health staff won’t work in that environment.

At the moment it takes two doctors and an approved social worker to ‘section’ a person, i.e. detain them against their will. Under the new legislation, there is a marked difference. There will be what they call ‘approved clinicians’, who can be just about anyone who has worked in mental health – psychologists, occupational therapists, nurses as well as social workers and doctors. Herein lies the detail that is making many of us very anxious.

I went to a party on Saturday night to farewell the wonderful woman who was ward manager in the days when I was in and out of the loony bin. Marva has become a great friend – she’s retiring to Trinidad, so I think it’s safe to leak the fact that ‘boundaries’ were overstepped a little – and she invited me along with a few other former patients, old staff and dozens of friends.

I got there early and went up to talk to a beautiful young woman in gorgeous blue and gold African garments who was sitting on her own. “Hello Liz,” she said, and suddenly I realised that it was my favourite former consultant looking absolutely fantastic, but unrecognisable out of context. Which was how I must have appeared to many of the nurses who emerged a bit later.

I’d spent a lot of time with most of them, not least because they’d had the joy of guarding me one-on-one when I had been at my most unwell and consequently my most unglamorous. When the penny dropped it was hugs and kisses all round, because we were there on equal terms. I saw them as people not guards, and they saw me as a person, and I think were proud of their roles in helping me back to life. Also present were the Occupational Therapists who I’ve always had a special relationship with, because they really did play a huge role in my recovery.

Under the new Bill, they could all be playing a part in deciding whether to section people. So I asked them all – if they’d had to section me, would they have wanted to make the decision?

“No way,” they said. They don’t see their job as being about depriving people of their liberty. They consider themselves to have caring roles. They said that if it becomes part of their job description they would be forced to quit.

This is a scary prospect for me, because the Mental Health Bill is going to weed out the people who really care and leave us with the people who want to make the loonies take their pills and lock us up. Maybe that six year old girl on the train knows more than I do.

Time For Last Orders

christian — Mon, 04 Jul 2005 15:03:14 +0000

A teenage boy with autism was threatened with an anti-social behaviour order (asbo) after the noises he made while bouncing on his trampoline upset a neighbour. A child with Tourette’s syndrome received an asbo banning him from swearing in public. And a teenager with Asperger’s syndrome was given an asbo banning him from staring over a fence into a neighbour’s garden.

These are just three examples of a disturbing side effect of the government’s hard line on anti-social behaviour.

First introduced in 1999, asbos can be applied for by local authorities or the police against those whose behaviour is considered anti-social and is causing alarm, distress or harassment. The breach of an asbo without reasonable excuse is a criminal offence, with a maximum sentence of five years in prison.

As conditions such as Asperger’s syndrome, autism and attention deficit hyperactivity disorder (adhd) can sometimes cause obsessive, unusual or socially inappropriate behaviour, this has led to a number of disabled children and adults being handed asbos purely because of their impairment.

Alex Gask, a solicitor for Liberty, the human rights organisation, says: “The reason it concerns us to such a great degree is that the letter of the law as it stands does not in any way suggest that this is inappropriate. It’s very important that the government doesn’t let this get out of hand.” He is convinced some cases have “slipped though the cracks of the system” and resulted in disabled people being imprisoned.

Amanda Batten, a National Autistic Society policy officer, says the use of an asbo to deal with the boy on the trampoline would be “completely inappropriate”.

“The boy will need sustained support from someone who understands autism and their behaviour and look at their support needs and work quite sensitively to change their behaviour. Putting them on an asbo without additional support is quite meaningless.” One solution that might help these cases, she says, is the charity’s Autism Alert card, designed to help people with autism identify their needs in situations where they find communication difficult.

Richard Brook, chief executive of the mental health charity Mind, is also “very concerned” over the inappropriate use of asbos. He says: “Although there are no statistics available yet, we know from anecdotal evidence that this does occur. It is completely inappropriate for those experiencing mental distress to potentially be criminalised rather than receiving the support they so desperately need.”

Matt Foot, a criminal defence solicitor and co-ordinator of the new pressure group Asbo Concern, says it is a “complete scandal” that the government does not collect statistics on how many disabled people are having asbos imposed on them. “It could easily be quite widespread, but we just don’t know,” he says.

Asbo Concern says the government should review the use of the control orders and move the emphasis towards prevention. “The government is almost on a crusade. They are not thinking about it in a balanced way.”

In February, the British Institute for Brain Injured Children (BIBIC) launched a campaign, Ain’t Misbehavin’, which called for more tolerance of children with behavioural problems.

Pam Knight, BIBIC’s director of development and communications, has spoken to social behaviour officers, members of youth offending teams and senior police officers. They tell her the charity is not exaggerating the scale of the problem. “The pressure is to increase the number of asbos,” she says. “We need to bring some balance back into the situation.”

Of course, there are arguments in favour of asbos, too – one case in Portsmouth saw a non-disabled man handed an asbo for parking his car in a disabled parking bay.

Noel Towe, senior project officer at the Local Government Association, defends their use. “I suspect where local authorities do use asbos, it is because everything else hasn’t worked. It is only because in their local society these individuals have made themselves such a menace.”

A spokeswoman for Mike Goodwin, assistant chief constable of Leicestershire Constabulary and the lead for the Association of Chief Police Officers on anti-social behaviour, says he had not been aware of such concerns until DN raised them, despite high profile media coverage.

But she says the Home Office has issued guidance, asbos are only imposed as a result of several agencies working together, and they are just “one tool to be considered along with other interventions”. She also says the Home Office believes some of the cases highlighted by campaigners are more complex than they appear to be.

The Home Office says it has issued guidance on asbos, which includes information on vulnerable people who commit anti-social behaviour.

A spokesman says someone with specialist knowledge should be involved in an assessment if there is evidence that a perpetrator of anti-social behaviour has an impairment. This assessment should determine the cause of the behaviour and how it can be addressed.

He adds: “When applying for an order against a young person aged between 10 and 17, an assessment should always be made of their circumstances and needs. This will enable the local authority to ensure that appropriate services are provided for the young person concerned and for the court to have the necessary information about him or her.”

But a Home Office spokeswoman admits the information it holds about people issued with asbos, as supplied by courts, is limited and “that there are no plans to do any future research”.

Until it does, it is likely that the true scale of the problem will remain camouflaged. And disabled children and adults will continue to face the threat of detention or imprisonment, simply because of their impairment.

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. _

What Do You Do?

Mon, 06 Jun 2005 12:07:24 +0000

The question “What do you do?” is pretty much the first thing people ask one another when they meet for the first time. It says a lot about you and is usually a nice easy way of launching into conversation. Having been unable to work throughout my adult life due to ME, I used to dread the question, until I chanced upon a better way of responding to it.

If I give a truthful and straightforward answer, it usually results in a conversation that I didn’t want to have in the first place.

“I am unable to work because of health problems” inevitably leads to “What health problems?”, if it doesn’t just stop the conversation dead. Naming my condition almost always provokes “What’s that then?” – and a full interrogation of my medical history.

Eventually, the person might move on to little pearls of wisdom that I’m sure many of us endure; wisdom about the impairment we have lived with for years from people who have only just heard about it.

“Have you tried homeopathy? That was good for my acne” or “I’m sure there must be something you can do if you looked a little harder”.

Then there’s the fact that I’ve been living off the state. A disabled friend once described explaining their incapacity to a stranger in a pub only to be confronted with an aggressive “So I’m paying for that beer you’re drinking with my taxes?” Though nothing like this has happened to me, I have always been afraid that this is what people were really thinking.

My profound lack of achievement bothered me too – I felt I had nothing to tell about myself. I had been a good student at a very academic school, although my true passions were writing, music and most especially drama. I had imagined I would be able to do everything; appease my parents with a degree in some navel-gazing subject then get onto the stage – perhaps via the Cambridge Footlights!

Alas, to date I have just three GCSEs to my name, I haven’t set foot on a stage since I became ill at fifteen, and I have never had a job. I always assumed that other people would be as disappointed in me as I was, should they discover the truth.

So I would skirt around the question and try to change the subject as tactfully as I could. If the conversation was guaranteed to be a short one, in a taxi or at a bus stop, I would say, “I work in an office” – something I had observed to be a commonplace euphemism for “My job is of little interest to me and even less interest to you, so let’s say no more about it”.

Otherwise I would try to deflect the “What do you do?” question with quips like: “As little as humanly possible” or “I’m really a hired assassin, but I don’t like to talk about work out of hours,” and watch people shuffle away.

But when they did stick around and I continued to evade the question, I would come across as having something to hide, or else as being too socially clumsy or just plain rude to answer an apparently simple question. The more embarrassed I was, the more embarrassing the situation would become. And when I saw this happening, all I could do was to go back to the line about being unable to work and endure the very conversation I had been trying to avoid, except this time I looked like an idiot from the outset.

When eventually I joined the Open University, I really embraced the status of student even though I never saw a union bar or a lecture hall.

And to my delight, most people seemed happy to go along with my chosen take on the situation. I could be honest about the fact I only studied a few hours every week because I was unwell, and people usually showed far more interest in my studies than my health problems.

Eventually a major relapse forced me to abandon my course. After a while, I started to write a story – in bed, on my laptop – and within four months I had produced an 80,000 word first draft. The draft was full of shocking inconsistencies; characters vanishing midway through the story, one character cropping up after he had died and similarly preposterous events. However, despite spending most of my time in bed suffering from what seemed to be the worst relapse ever, I had suddenly become something – I was a struggling novelist!

Writing a novel was something I was prepared to tell people about and that they wanted to hear. So when it came to “What do you do?” conversations, my incapacity faded into insignificance.

All of a sudden, I began to figure out that my earlier conversation-killing experiences weren’t about my joblessness or some great fascination with my medical history. The problem lay in the unhelpful subject matter I was presenting people with. “I am unable to work because of health problems” is an opener to a conversation about health problems and not much else.

It wasn’t that my life had been empty before, rather that it just hadn’t occurred to me that any of my pursuits were worth mentioning, not compared to other people’s proper jobs. I had written poetry and pieces for charity magazines, I had painted pictures, composed songs and ran an online support group, as well as trying to finish my education, but I hadn’t recognised “What do you do?” as an opportunity to talk about any of these things.

So next time somebody asks you “What do you do?”, bear in mind that they are just trying to engage you in small talk. It isn’t necessary to define ourselves by our paid employment or lack of it. Consider what sort of conversation you want to have and remember that you are free to define yourself however you like.

Bedside Manners

Tue, 03 May 2005 16:51:50 +0000

I get asked to speak at all sorts of functions, for everyone from large corporations to the local Women’s Institute (the latter guaranteeing lots of home made cakes to which you can’t say no without risk of offending) and the latest delight was speaking to medical students at a nearby hospital.

It was a very nice hospital, with very nice students, but trying to condense everything they might need to know about disability sport into just an hour had to be one of the toughest tests of my life – not least because I can easily make three sentences turn in to a sixty minute-long conversation.

The talk went off without a hitch, until one of the questions at the end nearly made me laugh out loud. I always think of doctors as such confident people, being mostly scared of them myself and avoiding them if at all possible (bad news and all that), but this student actually wanted to know how they, as doctors, should talk to disabled people. Something inside me wanted to shout: ‘Loudly, three inches from their face, and if you treat them like they’re stupid then all the better!’ but I didn’t because, as much as anything else, I am boring.

I could have added: how about just talking to people as if they are people, dropping the poncey language, and looking them in the eye – whether or not they happen to be blind? But then, when I thought about it, I realised that for all doctors’ bravado they are probably quite often more scared than us patients. To the poor, newly qualified doctor who, at a loss to make conversation with me, enquired how I ‘caught’ Spina Bifida, I now realise that ‘with a butterfly net’ was possibly not the best answer (he then looked at me strangely and I had to say: ‘It’s congenital, you can’t CATCH it’ – after which he was too embarrassed to look at me again).

And most of my experience of hospitals has been good – even, in some cases, great. The doctor I saw when I was expecting Carys was an angel and didn’t laugh at me when I asked whether having a baby naturally would be worse than doing a gruelling marathon and, if so, whether I could have as many drugs as possible).

Perhaps my positive experiences come from the fact that my mum always made me ask doctors lots of questions about what they were doing to me, and practically wouldn’t let me leave the room until I had asked them something (when she got ill, however, she did no such thing and just wanted to pretend her illness wasn’t there – if I’d realised that at the time, I would have damn well gone to the hospital and made her!)

But when one young athlete recently asked me whether doctors ever treated me like I was stupid, I found I had to say yes. I remember a time when I was offered the ‘opportunity’ to have my legs made the same length. After a simple procedure involving taking a piece of bone out of one leg, inserting it in to the other, putting me on traction for weeks, making me miss about six months of school and leaving me with scars, my legs would be the same length, I was told.

The doctor in question looked surprised when I didn’t do a loud ‘whoop’ of joy and said no to the idea. To be honest, the fact that one leg (can’t even remember which) is about two inches longer than the other has never been a problem to me, and if I was going to have surgery to improve my looks then other body parts would be higher up the list.

I was removed from the room and my mum was duly ‘chatted to’, in order to encourage her to make me change my mind. Luckily, Mum ascertained that I wasn’t going to walk again, it wouldn’t improve my quality of life, and as I was going to miss out on the education they had fought hard for me to have, it wasn’t going to happen.

About five years ago, the same operation was launched as a major new medical initiative. Coming fifteen years after I’d been offered it, I couldn’t help but wonder whether the doctors had planned to use me as an ‘experiment’ – not being the only one of my disabled friends who suspected they may have been used in this way by the medical profession. After all, if the goods are already damaged, it’s not so bad if things go wrong!

I told this story to the medical students at my talk, and they looked duly horrified. I don’t care if they didn’t remember anything at all about inclusion and British sport after my lecture, as long as they remembered that.

To be fair, there have been lots of people who have treated me like I am stupid throughout my life, so blaming just one profession is hardly rational. But either way, my advice is: if you find a good doctor, hang onto them. Never let them go, and follow them, wherever they move to.

The Voice of Women with Disabilities

christian — Wed, 27 Apr 2005 10:26:58 +0000

Today I want to talk to you about our visibility, about our voice,
the voice of women with disabilities and I want to talk about the fact that we have to lobby more for our rights, for our Human Rights.

Disabled women’s rights are women’s human rights.

During the last 20 years the awareness of disabled women about
themselves has grown. But if we look at ourselves objectively we can clearly see that there is no real place for us in society. We are often not recognised as women, as women with disabilities. We have to admit
honestly that most of the time we are regarded as disabled persons.

It is a fact that disabled women and girls are much marginalized and
mostly invisible to policy makers. Only in Germany the situation for
us
is different. We are recognised by our government as a minority group
with special needs.

Honestly I do not know of any other country in Europe where women
with
disabilities appear and are considered in legislation apart from
anti-discrimination legislation. But I know that we have been
lobbying
very hard for years in Germany before we had some success.

But what about our status, our visibility within the disability
movement. Here the situation is different. We became stronger
although
the movement is still male dominated. We became more self confident.

We
have been publishing books describing our situation. We founded
self-help groups We now even have networks of women with
disabilities,
quite strong networks. We defined our specific issues like for
example
our status as women, our sexuality, motherhood, bioethics, violence,
sexual violence, education and professional training, jobs, health
care
and personal assistance. In all of these issues the needs of disabled
girls and women are different from those of disabled boys and men.

We
need to stress again and again that disabled women and girls are subject to massive human rights violations without regard to their age, ethnic origin, sexual orientation, class and religious or other status.

We have to draw attention to this fact. We have to make society, the
politicians aware of this and demand change, we demand recognition of
our rights. We really have to become more active, we have to fight
for
our rights. And we need allies in this fight.

I just came back from New York last month where I attended the 49th
Session of the Commission on the status of women. About 6000 women
from
161 countries where present mostly from non governmental
organisations.
It was a so called mainstream event. That means mostly non disabled
women at least not visibly disabled women were gathered. Somehow I
had
the feeling that partly I was still regarded as a poor disabled
person
who has to be pitied.

Only when I started to speak and distributed position papers on
disabled
women and girls, the situation changed. The women noticed that I had
something to say in a political way. They agreed that it is necessary
that disabled women demand change, demand inclusion, demand to be
treated as equals

Again I noticed, because it was so obvious, that we have to work
more,
to combine our efforts to make disabled women and girls visible,
heard
and respected. We have to talk about our special issues and demand
political change. We need strong anti-discrimination legislation, we
need legislation on personal assistance and we need legislation to
punish and fight violence against disabled girls and women to name
only
some of the most pressing issues. Disabled girls and women need to be
included and especially mentioned in all relevant laws and
regulations
passed by our own governments. We demand to be included in all the
relevant documents and conventions of the United Nations. For example
at
the moment we lobby to be especially mentioned in the Convention on
the
Rights and the dignity of disabled people and in the Millenium
Declaration.

We must not be satisfied if we are told that disabled women are
mainstreamed within laws or agendas. We have to insist on being
mentioned explicitly otherwise we will be forgotten. We have become
increasingly invisible through mainstreaming.

We are women who face the same gendered discrimination whether in our
personal lives, in our organisations and in society. For example,
violence against women is most prevalent with disabled women. This is
in
part due to a disabled women’s increased dependence on family or
institutions- both of which can become violent. As for violence
within
institutions and at home, disabled women are further burdened because
their complaints are not taken as legitimate, it is not believed that
violence happened to them. Amnesty International’s collection of data
on
sexual violence has only two lines on violence against disabled women
and girls. In all of the print material and publications that have
been
distributed at the United Nations in March 2005 I have seen no
mention
of disabled women and girls.

Unfortunately this is a fact. We have to change this.

We have organised this 4th European conference of disabled Women to
draw
attention to the fact that disabled girls and women are especially
vulnerable to violence in a place where you should feel safe namely
at
home. Not only are disabled women subject to violence committed by
relatives but also committed by their own assistants.

We have to make this fact public and we have to demand that we need
accessible, barrier-free Crisis Centres, we need counselling. Peer
counselling, we need self defence courses, we need police and courts
who
respect us and believe us.

But although violence may happen in this close relationship of
personal
assistance it is an indispensable service which we need in order to
live a self-determined life. That’s why we need good legislation on
personal assistance services in all countries. Every disabled girl
and
woman (boy and men as well) must get the support they need depending
on
the severity of the disability no matter whether it is a physical,
sensory, intellectual, and other disability. This enables us to
participate in all human activities. Examples include, parenting,
sexual
activities, education, employment, environmental development,
leisure,
culture and politics.

I know very well that in many European Countries disabled girls and
women can only dream of something like personal assistance. They have
to
be content with the support their environment concedes to them.

I can only say don’t be afraid and ashamed to demand to live a
dignified
life. Don’t be content to be cleaned and to be fed. Live has to offer
more to us than that Even if it sounds totally unrealistic to you in
your situation. You have to fight for your dream of a better life. I
know that it is extremely difficult to demand rights when you are
constantly told that there is no money for the assistance and for the
financial support you require. But you have to insist, you have the
right to participate in the life of the community, to live a decent
life.

And we the disabled women have to define what a decent life means for
us. Not the politicians nor anybody else.

In the kit which we distribute here we you will find the proposal for
a
European legislation on personal assistance This will help you in
your
lobbying, in you advocacy.

It is unacceptable that an estimated number of one million disabled
European women and men have to live in residential institutions,
marginalised and invisible. For this forgotten population personal
assistance is one of the keys for moving back into the community

A voice of our own is needed to present facts, convincing arguments
and
politically viable solutions that promote self-determination in
every-day life and break the culture of dependence that we have been
exposed to far too long.

We need a strong voice of our own to get a change. We need to empower
ourselves, We need training courses in financing, advocacy,
self-defence, peer counselling and peer support for ourselves.

We need to network far more among ourselves. Disabled women must know
about their rights. These right have to be in easy understandable
language and in braille so that all disabled women can understand them

We need allies in this fight for the recognition of our rights, our
Human Rights therefore we ask the international women’s movement to
support disabled women and girls. Include and make visible disabled
women’s rights in all of your publications and programs. When you are
hosting events consider the varying needs of participants so that can
be
included.

We need to live in a world where there is peace, where our human
rights
are respected, where we can live a self-determined life with the
support
we need, where our diversity is regarded as cultural richness. We
disabled women and girls we are strong, we have courage and we are
beautiful.

This talk was presented to the 4th International Women’s Conference in Paestum, Italy.

Dinah Radke is the Vice Chair, Human Rights, and Chair of the Women’s Committee at Disabled Peoples’ International: www.dpi.org

We Deserve an Apology

Tue, 26 Apr 2005 17:29:21 +0000

People with learning difficulties have been treated unfairly for hundreds of years here in the UK. The government should take responsibility for its part in this discrimination.

As leaders of one of the largest organisations run by people with learning difficulties we think it’s time for the government to apologise for what has happened to people with learning difficulties.

We think it is also important for the government to take a lot more action to stop this discrimination continuing today and in the future.

People with learning difficulties who went before us and all those living today have experienced a lifetime of being discriminated against.

We are probably the most excluded people in our society. We don’t have much money, we don’t have employment and we didn’t get a good education. Many of us have been kept in long-stay hospitals for long periods of time.

The last people with learning difficulties will soon move out of these hospitals. But that doesn’t mean that we can forget all the things that happened to us in the past.

We were given horrible labels such as mentally handicapped or mentally subnormal. We were told we had challenging behaviour if we didn’t like what was happening to us.

Many of us have experienced or continue to be abused; we were and are not given the support to protect us from people who physically or emotionally abuse us.

We were often rejected by our families because we were seen to be different to other people. We were sent to institutions that were a long way from our families, friends and community.

Others were made to go special schools or use services that were also a long way from our homes.

We don’t get away for holidays like other people. We don’t have the same choices of housing as other people. We have to live in residential homes or houses that are almost always owned by other people or organisations. This means that we have to wait for our repairs to be done. The work on our houses is always done to other people’s standards.

Many of us live in residential homes which are very hard to move out of. We have to live
the way that other people want us to live, but it is our life, not their life.

While change is outlined in the Valuing People White Paper and things have been getting better with the Disability Discrimination Act, it doesn’t undo what has happened in
the past. We want the same respect and to have the same opportunities that other
people have.

The first step in getting this respect and to start getting the things that other people have in life is for the government to apologise for the abuse and discrimination that has happened to us in the past.

It is also important for the government to take a lot more action to stop this discrimination continuing today and in the future.

We want the government to pledge to do this immediately. People with learning difficulties should witness the government making the pledge to take the essential action to change things. It should be a pledge signed by both the government and people with learning difficulties.

Rights Road?

Wed, 20 Apr 2005 16:31:26 +0000

The Disability Bill is among those being pushed through before the general election, but the future of the Equality Bill is now up in the air. Are the bill’s proposals to replace the Disability Rights Commission with a super-commission covering disability, race, gender, age, sexuality and religion vital for tackling discrimination?

The government claims its Commission for Equalities and Human Rights will “transform” the way discrimination and disadvantage is tackled in Britain. Apparently, it will have a greater impact than the existing commissions because its wider remit will make it “a stronger champion for all”.

Stirring words, but behind the promises, how much do disabled people actually share with gay people, old people, black people and the rest – and could we really work together?

On the one hand, it seems to make complete sense to have one body which can take an all-inclusive role in tackling discrimination. What’s the point of reinventing the wheel and having six separate bodies all thinking about exclusion, oppression, marginalisation and the rest of it, when many of the experiences will be the same? And anyway, disabled people are also men and women, black and white, gay and straight – and most of us, like it or not, are going to get old. None of us are ever likely to just face one kind of discrimination, and having a body which can think about what’s been called “multiple oppressions” is surely useful.

But on the other hand, there are differences in the way oppression crops up for different groups, which must not be lost in bringing together the battle against discrimination. For instance, it seems to me that one of the ways in which disabled people are discriminated against which differs to other groups is that there remains the hope, within certain sections of society, that someday we won’t exist anymore (perhaps when the ‘miracle’ of modern science effectively removes all impairments from society). While this may be a myth, it does affect the way disabled people are considered and treated, which doesn’t happen for other marginalized groups (save on the wilder shores of the lunatic campaigning fringe).

Disabled people also have a more recent history of exclusion from mainstream society, and it is only in the last two generations that non-disabled and disabled people have actually grown up alongside each other. As a result, there are still many non-disabled people who have no experience of disabled people whatsoever, save perhaps as a carer. And, of course, we face a particular kind of discrimination in the form of inaccessible environments, which other people do not.
All of the above suggests that disabled people need separate consideration when it comes to tackling oppression. But then, can’t the same argument be taken for other marginalized groups? Can racism, for instance, really be understood and tackled without facing up to the history of slavery and colonialism, something other marginalized groups have not been affected by? And can the ‘moral’ and ‘ethical’ opposition to the new rights given to lesbians and gay men really be compared to other forms of discrimination?

Regardless of its differences and similarities though, all prejudice comes from the idea that there is such a thing as an ideal or correct person in the first place. It seems that this correct person is a white, male, heterosexual, middle-class man from the south of England – and anyone who fails to fit that model is at a disadvantage. If we hang onto that mindset in any way – by tolerating racism or homophobia, for example – how will we be able to think properly about disability discrimination? Besides, all of us have multiple identities, and what’s the point of being an equal, disabled person if you experience racism? Where is the sense in having good access to work if you are harassed because of your sexuality once you get there?

Ultimately, any kind of discrimination distorts our lives. It prevents us flourishing, no matter what our identities and, to my mind, it stops us truly ending any oppression. A new commission which could begin to tackle discrimination in an inclusive way – thinking, acting and informing with the goal of ending all kinds of inequality – may finally herald the beginning of a truly equal society.

David Ruebain is a leading education and disability rights lawyer. Last year he was shortlisted for the Law Society Gazette’s lifetime achievement award in human rights.

Not Sexy! Says Who?

christian — Mon, 21 Mar 2005 23:07:04 +0000

Writing sex tips recently for a women’s magazine, I was forced to stop and think.

There I was, talking about sex, yet ever since I hit puberty I myself had been convinced that I would never get a partner. The worry only intensified when I went into my wheelchair and found that not only could I not walk, but Mr Wobbly now stayed wobbly no matter how much encouragement he was given to do otherwise. What girl would want to get physical with me?

That fear has been with me ever since, and has led to me making some very bad relationship choices, mainly in the “better stay put because you might not get another chance” category. But if I’m truthful, I’ve never had any problems getting a date. I have spent no more than three weeks single since I was 19, and I’m 40 later this year. I have never had an able-bodied girl freak out about my disability, and have never had a complaint when I get jiggy with it. In fact, I have never had any experience of anyone able-bodied being put off by my disability at all.

Before you all start puking and thinking this is an advert for Planet Mik, it seems I’m not the only one. If I think about it, every disabled person I know nowadays is in a relationship, most of them with able-bodied partners. I even have a good mate who’s a wheelchair user, a star in the worldwide swinging scene, and regularly makes porn. So why do we still seem so sure that the able-bodied world think of us as sexless?

I have recorded TV and radio shows about the difficulties of being disabled and finding love, written manuals on disability and sexuality, and even attended whole conferences on the subject. But they have all been from the same angle: disabled people talking about what able-bodied people think about sexuality and disability.

I am sure that, a while back in history, we were thought of as unsexy. After all, it was only 60 years ago that the Nazis tested gas chambers on us, and even more recently that we were still being sterilized in the USA. But society’s views on disability have changed massively since then.

Once, you never saw cool cripples; now there are loads. Hey, I know – I made my career on being “that punky crippled bloke”, but now there are so many attractive crips in the media that I don’t get a look in! Same goes for the disabled ladies. We’ve even had disabled models like Shannon Murry advertising make-up in the states. If these people are regarded as cool and attractive by the media, then the general public are likely to be thinking the same thing about them. OK, it’s not exactly a fashion statement yet to have a crip on your arm, but I hope we’ve got past the hang-up we used to have that if someone was interested in us they were probably a devotee. Yeah, there are some pervs out there who only want to have sex with a crip, but they are a small minority. Most people in the world look upon us in the same way as they do any other minority group: we are an unknown quantity, but we are not beyond love.

Yet perhaps, in some cases, our fears have become a self-fulfilling prophecy; if we still believe no one will fancy us, then no one will. If we are so sure it will be difficult for us to find love, we won’t do all the things the able-bodied do to get out there and look. All of my able-bodied friends, of both sexes, spend hours bemoaning the lack of “nice” people out there, and I know all of them wouldn’t think twice about going out with someone disabled. I reckon there are armies of people out there who are all alone, wishing for true love, and not caring whether that love can walk, see, hear or whatever. All they want to is to love and be loved back.

So, when my article about sex tips was greeted with much admiration from the able-bodied editors, I realised that, whether or not it used to be hard for a disabled person to find a partner, it is soon going to be a push-over. My advice? Get your pulling gear on…