It should have been such a brave new world – institutions closing, disabled people growing in strength and voice. But although the new disability activists supported the closure of the long-stay hospitals, they were also fighting on other fronts. The disability rights movement had started to emerge as early as the 1960s, although there had been forerunners. The National League of the Blind and the Disabled, a trade union, was established as early as 1899. But as one activist, Richard Woods, observed, ‘People began to realise there was more to life than employment.’
A key factor in the radicalisation of the disability movement was the realisation ‘that disabled people were not sharing in the wealth of the affluent society that was emerging in the 1960s’, as Jane Campbell and Mike Oliver argued in their influential book Disability Politics, about this period. Jane Campbell had been one of the earliest activists in the new movement and one of the first disabled people with high support needs to go to one of only two universities, Warwick and Sussex, in the 1970s that would accommodate disabled people. As a young woman she felt extremely alone, she told me in an interview, with doctors frequently warning her that her condition, spinal muscular atrophy, meant that she could die. It is a measure of how far some disabled people have come that she is now an influential figure in the House of Lords and has confounded medical opinion.
Looking back, she explains the movement’s success through social movement theory, talking about tension, mass movement, resource mobilisation and political process: ‘There was clearly strain in society in the 1960s in that disabled people were not getting a fair share, or even any share, in the affluence that was emerging. It was also a time of rapid social change and, as well as being affluent, the 1960s were swinging as well. Disabled people, however, began organising collectively in order to secure a reasonable standard of life, not because they wanted to participate in rapid social change.’ The first such group was the Disabled Income Group, which from the late 1960s onwards pressed for a disability income for all.
But things became political when a frustrated wheelchair user, Paul Hunt, who lived in residential care in Hampshire, wrote to the Guardian on 20 September 1972 calling for other people with physical impairments to join together to fight institutional care. He declared: ‘severely physically handicapped people find themselves in isolated, unsuitable institutions, where their views are ignored and they are subject to authoritarian and often cruel regimes’.
Other activists such as Maggie and Ken Davis joined the fray, arguing: ‘Whilst there might have been a time when it was perfectly reasonable for disabled people to have been segregated and incarcerated, the growth of technology and the availability of wealth in British society had reached the point where there was no longer any justification for disabled people to be left on the sidelines.’ Vic Finkelstein, a physically impaired South African doctor and anti-apartheid exile, got involved too, saying: ‘Basically it goes back to the fact that disabled people are socially dead so you don’t need a home.’ He too campaigned for the end to institutionalisation, which he described as being as iniquitous as slavery.
Paul Hunt and Vic Finkelstein, along with others, founded the leftwing Union of the Physically Impaired Against Segregation (UPIAS) in the early 1970s, with a clear mission to end what they called ‘incarceration’ for those with physical impairments. One of its first position statements read: ‘The reality of our position as an oppressed group can be seen most clearly in segregated residential institutions, the ultimate scrapheaps of this society.’ From the start the movement was largely white, male and dominated by those with physical impairments. Vic Finkelstein acknowledged this nearly ten years ago: ‘There are, believe, good historical reasons why people who used wheelchairs did predominate in UPIAS. They tended to be less isolated and so had greater awareness of significant social changes that were already taking place in the health and welfare services as well as political struggles and the general state of the economy. Many had been ablebodied and were familiar with social movements.’ He added: ‘The visible prevalence of people using wheelchairs in UPIAS made some groups . . . awfully suspicious of what we wanted to achieve.’ When UPIAS members decided to broaden the fight in the 1980s, founding the British Council of Disabled People, the same problems remained. Not surprisingly one key member described it in retrospect as ‘the wheelchair brigade’. Jane Campbell characterises it as ‘white and male’, as well as being full of ‘highly intelligent, academic disabled people’. Another early member calls it ‘elitist and argumentative’.
None of this should denigrate its achievements, given the barriers disabled people faced at that time (most were poor and jobless, however talented, and had no support to live independently). However, many within the movement now agree that it excluded certain groups – those with learning difficulties and mental health problems in its early years, the very groups that were the first targeted for attack in the community. Jane Campbell speaks for many when she describes the effort of will it took to overcome her own attitudes towards some groups: ‘I was horrible to people with learning difficulties at my special school. We were taught to dislike people with learning difficulties because we were “better” than them. It was internalised oppression; I would cross the road rather than be seen with a learning disabled person – when I was a child, I wouldn’t be seen dead with one of them, because I was ashamed. It was much later, when I met other disabled people, that I was able to deconstruct my anger and feelings of not liking disabled people, even though I was one.’
The nascent British movement was inspired, to a large extent, by American activism – which was based around seeking individual rights, such as access, facilities and appropriate support. The American movement had its roots in the return of physically impaired veterans from the Vietnam War, who sought to reduce physical barriers to their inclusion in society. But soon students were active too, most famously at Berkeley in California, where Ed Roberts founded a group known as the Rolling Quads, with wheelchair users pushing for the right to go to college. In 1972 Roberts founded the first ever Center for Independent Living, influencing the next wave of British activism. Disabled people in Britain saw their counterparts in America organising sit-ins, pushing for the right to access, and occupying health, education and welfare offices in the late seventies. America also saw a parallel movement develop, as people with learning difficulties started to found ‘People First’ organisations, pressing for equality.
Gary Bourlet, a young British man with learning difficulties, visited the US in the eighties and saw for the first time people with learning difficulties speaking up and campaigning for themselves. In 1984 he came back determined to start the first British People First organisation. Like others in the emerging disability movement, he was almost penniless, as he recalls: ‘I wrote 400 letters to disabled people, handwritten, I didn’t have a computer, and I paid for the stamps out of my benefits money. We started off in Camden, with just twenty people in the room.’ People with learning difficulties were still coming out of long-stay institutions and many were spending long hours in day centres. They wanted real jobs, real wages, better housing. But People First was not connected in any way with the mainstream disability movement – as Bourlet says, ‘We were on our own, at that time.’
Before long the mainstream movement was evolving – and challenging the language around disability. Its slogan ‘Nothing About Us, Without Us’ still resonates today. Disabled people were speaking for themselves and didn’t want charities, or carers, speaking for them any more. They challenged what they termed the ‘medical model’ of disability, the idea that disability is an individual medical issue that can be solved. Disabled activists didn’t want to be made ‘better’ or cured and, given the way doctors behaved to them, certainly didn’t want them to be in control of so-called treatment.
The ‘charity’ or ‘tragedy’ model was also pilloried, for putting charities in control of decisions that would be made better by disabled people themselves. The charity model, as one writer explains, is promoted by welfare organisations: ‘The images and ideas that charities portray of disabled people include pitiful, needy, helpless victims, external children, asexual, incurable, courageous, special, exceptional, and in need of care. But most of all, they need your money.’
Disabled people wanted equal rights, not a begging box. The first demonstration to hit public consciousness was on 7 July 1988 at the then Department of Health and Social Security, at the Elephant and Castle in south London, where disabled people gathered to protest against benefit cuts. It was followed by disabled people chaining themselves to, and protesting against, inaccessible buses and against having to travel in the guards van on trains. Slogans included, on one wheelchair, ‘I’m too sexy for a charity photo’, ‘Rights, not charity’ and ‘End apartheid for disabled people!’.
The new disabled people’s movement was going through an angry phase, with much of its ire directed towards the ‘big seven’ charities (Radar, Scope, RNIB, RNID, Leonard Cheshire, Mencap and Mind) which had carved up both financial resources for disabled people and media attention between them. Mike Oliver called the charities Scope and Radar ‘downright dangerous’. Jane Campbell dubbed them ‘super-tanker charities’, unable to change policy quickly: ‘they have influenced disabled people to reject their bodies and minds, to regard their impairments as a tragedy that must be eradicated at any price, and to return to some myth of undamaged normality’.
Bert Massie, who was at this time at Radar, one of the most influential charities, reflects that the movement had to ‘attack the charities to attract resources’, in order to move the pot of money away from the charities to the movement itself. Looking back, he says that he felt hated for working at Radar and calls the movement ‘segregationalist’ at that time, as it searched for identity. But the attacks had positive results, he notes: ‘The charities did defend their positions, but they also had to look at what they were doing very carefully. The movement gave disabled people a sense of empowerment that the charities had failed to do. As charities we got the laws changed, we got things moving, but the movement empowered people.’
Mike Oliver coined the phrase the ‘social model’ of disability in 1983. As Michael Devenney explains: ‘The social model asserts the idea that disabled people have their own identity as people with impairments within society . . . in this model the problems of impairment or disability are turned on their head and become the collective problems of society, not of the individual disabled person.’ Society’s attitudes towards people with impairments are disabling, the social model argues, as is the environment that denies them access to buildings and public space. Public policies by insurers, banks, schools and the police are also disabling, such as disabled car users being routinely charged higher insurance premiums.
All of this was well and good, but the social model had its critics. One of the most prominent was the disabled academic Professor Tom Shakespeare, who argued that the model has both strengths and weaknesses. It boosted self-esteem and anger amongst disabled people, and increased the pressure for political reform. But it was largely articulated by heterosexual, white, physically disabled men and ignored the experience of women and people with learning difficulties. It also skated over the negative aspects of some impairments – denying, for instance, that disability can cause suffering. ‘Most activists concede that behind closed doors they talk about aches and pains and urinary tract infections, even while they deny any relevance of the body while they are out campaigning. Yet this inconsistency is surely wrong: if the rhetoric says one thing, while everyone behaves privately in a more complex way, then perhaps it is time to re-examine the rhetoric and speak more honestly.’ He argued that the social model has become a sacred cow and that pushing for a ‘barrier free Utopia’ did not solve all problems inherent in disability.
There was another problem too. Articulating the new theoretical model consumed precious time and effort, as did the struggle for equality on so many fronts (the right to equal employment, access to shops, restaurants and so on). The Government listened to what the disability movement said it wanted, and started to respond by developing proposals to establish, in statute, the concept of equal rights for disabled people. But that focus on theory, access and rights meant that only a handful of people in the feisty, poor and busy movement noticed those who were already experiencing hostility – the people with learning difficulties and mental health problems who were coming out into the community.
The numbers of those held in mental hospitals had declined by nearly half between 1955 and 1975, down to around 80,000. But many had left hospital without proper provision being made for their accommodation, their social needs and, crucially, their medication in the community. As Andrew Scull observes: ‘the whole policy was undertaken with little prior investigation of its likely effects’, adding: ‘many of those expelled from mental hospitals become lost in the interstices of social life, and turn into drifting inhabitants of those traditional resorts of the down and out, Salvation Army hostels, settlement houses and so on’.
In 1985 the Social Services Select Committee report, Community Care with Special Reference to Adult Mentally Ill and Mentally Handicapped People, stated that hospital closures had outrun community-care provisions, particularly in relation to people with mental health problems. There were calls for Government action and increased spending. In the Committee’s own words, ‘A decent community-based service for mentally ill or mentally handicapped people cannot be provided at the same overall cost as present services. The proposition that community care should be cost neutral is untenable.’
A small number of killings by people with mental health problems who had left long-term institutions sparked a fearful and angry backlash among the general public in the 1980s and 1990s. The incoming Labour Health Secretary, Frank Dobson, even went as far as to declare in 1998: ‘Care in the community has failed. Discharging people from institutions has brought benefits to some. But it has left many vulnerable patients to try and cope on their own. Others have been left to become a danger to themselves and a nuisance to others. A small but significant minority have become a danger to the public as well as themselves.’
The long-stay-hospital closure programme had started later than the asylum closures. In 1971 there were 58,850 people in long-stay hospitals. Nine years later, there were still 51,500. In 1979, the Jay Report (of the Committee of Inquiry into Mental Handicap Nursing and Care) had, yet again, re-emphasised the need for integration into the community for people with learning difficulties. The concept of normalisation, where services for excluded groups are as normal and ordinary as possible, reducing segregation and promoting respect and choice, was creeping in, but there was still much resistance to change from within the long-stay system.
In the 1980s, however, the closure of the long-stay hospitals got under way in earnest. During that decade the number of people with learning difficulties living in hospitals fell by nearly 20,000, to about 33,000. When Sir Roy Griffiths published his report on community care for the Government in 1988, he made it clear that everyone discharged from a long-stay hospital should be given a clear and realistic package of care and a named care worker who would be responsible for them. But this didn’t happen. The massive job of resettlement overlapped with the asylum closures, and chaos duly ensued.
As the process accelerated in the eighties and early nineties, the system was ‘characterised by chaos and confusion’, according to Jean Collins from the campaigning charity for people with learning difficulties, Values into Action. In her book When Eagles Fly, published in 1992, she underlined the lack of clarity about where people should go and the inadequate planning of the process. She followed this with her 1993 report, The Resettlement Game, on the situation for people with learning difficulties as they came blinking out into the light after years of seclusion. No one had prepared them for life outside. Many left with nothing: ‘after twenty, thirty years people walk out of hospital clutching a black bin bag containing the whole of their life history . . . the clothes in the bundle often don’t even fit’. Some came out with tragic stories about their confinement – one woman had been put away for breaking a plate at the age of 16, another had been subjected to an unnecessary enema every other day for some long-forgotten medical reason.
No one seemed to know who was responsible for checking up on the former long-stay patients when they were resettled. There was confusion between the health authorities and social services departments. Many of the former patients seemed to have been abandoned, and they didn’t receive the visits from social workers that might have given them some protection and the opportunity to report abuse.
The investigative journalist John Pring, in an interview for this book, said: ‘This was exacerbated by the fact that because the longstays were usually in the countryside, and few inner-city boroughs had private homes in their own boundaries, an inner-city authority’s residents could be dispersed far and wide. There was no way that social workers, even when they knew about people placed in care homes miles away, would have the time to check up on them regularly. And they didn’t. And because there was no slack in the system, there were many inappropriate placements.’
It was John Pring, then a young reporter in Slough, who in 1994 would uncover the scandal of the Longcare residential homes, which he wrote about in his book Silent Victims. By the mid 1980s the number of smaller, private residential homes like those at Longcare was rising by about a fifth every year. These institutions were springing up to cater for those who were not seen as being capable of living independently. Ironically, some would turn out to be as abusive as, if not more abusive than, the long-stay hospitals. Indeed, as John Pring observed: ‘The resettlement programme presented many of the former patients with some new freedoms, but the way it was managed also exposed many of them to grave new dangers and poor quality care, in homes that were a long, long way from the family-type settings that had been envisaged.’
Gordon Rowe, a former social worker who had worked at Broadmoor, knew when he set up Longcare in 1983 that there was a severe shortage of residential homes for learning-disabled people. Thousands of patients were being resettled into the community from the long-stay hospitals. Many of these people had been living in such institutions since they were very young children, often for more than fifty years. He set up two homes, with a substantial number of places (thirty-eight and twenty-eight respectively). John Pring explains what happened: ‘The closure of the long-stays was exaggerating the tensions in the residential care system, and people like Rowe, with his social work contacts, were well placed to take advantage. With little or no oversight, Rowe saw, and took advantage of, the opportunity. For ten years, former social worker Gordon Rowe beat, raped, ill-treated and humiliated the residents of the two residential homes for adults with learning disabilities he owned and managed in south Buckinghamshire. Many, including those who moved to the Longcare homes, were just abandoned by the authorities. Those who went to Longcare were left at the mercy of a man who had already been investigated by police for serious sexual offences against other people with learning difficulties.’
John Pring started investigating Longcare in 1994, on the Slough Observer, and his work led to the reopening of the police investigation into abuses at the homes. The local MP, Fiona Mactaggart, also took up the case after she was elected in 1997. The trial of the three managers (Gordon Rowe killed himself in 1996) took place in 1997. Paul Boateng, then a health minister, admitted after sentencing: ‘This case has brought out real failings. We need a tough, transparent and clear regulatory system across the board.’ The inquiry into Longcare, by Tom Burgner, reported in 1998 and recommended an independent element in the inspection and registration of care homes.
Reflecting on that time, Pring believes that Longcare ‘demonstrated every single flaw in the system – not enough social workers, shortage of good placements, poor registration and inspection procedures, poorly trained and paid staff, no links between homes and the communities around them, people with learning difficulties treated as third-class citizens, not enough money put into learning difficulties services and lack of communication between the agencies’. And such homes were as institutional as what had gone before. They were a bit smaller, but that on its own wasn’t enough to stop appalling abuse occurring. The power relationship between staff and disabled people had not changed.
Those who were deemed able to live independently in the community were also cast adrift. As Jean Collins concluded, they were ‘pauperised and dependent . . . denied the opportunity to function as independent and worthy human beings’. Many were wholly unprepared for life outside. Some people were dispersed far from the areas in which they had lived for years, and many in the community did not want them as neighbours. Prophetically, Collins observed that ‘resettlement teams tend to find that the houses that are offered by the council are in the most undesirable streets on unpopular estates. One resettlement officer said “do you leave the people in hospital or put them on the streets where no one else wants to live?” ’ And their self-esteem, experience of education and expectations had been reduced too. They expected little of the community, Collins noted: ‘their life of deprivation in mental handicap hospitals has narrowed their horizons, limited their experience and lowered their expectations’.
There was also emerging evidence of hostility, as Michael Bayley had found when he had investigated the start of the long-stay closure programme in 1973. One mother of a disabled young person told him: ‘When we’re out, boys, they can be very cruel.’ Another said: ‘I was once told that if she was a nuisance to the neighbour they could send her away.’
The alarm was sounding, but few were listening. One academic, Margaret Flynn, studied nearly a hundred people who had moved out of hospitals and hostels in 1988. Apart from social isolation, she found that some were also repeatedly victimised and targeted. In words resonant of Fiona Pilkington, one single woman said: ‘I’ve been robbed three times in two years here. That’s why I always keep my curtains closed . . . I’d like to move because of the kids. They throw eggs and all sorts at my windows. They call me names and throw things at me when I’m out. The window cleaner can’t get the mess off the windows. The police can’t do anything. No one can stop them.’
Flynn warned that some were starting to isolate themselves, such was the level of victimisation: ‘people who experience victimisation are unable to trust others and, regarding themselves as prey, they do not or cannot take the necessary steps to form relationships. Some people are too frightened to leave their homes and, inevitably, this reduces their opportunities to meet others.’
Cast adrift, disabled people who had been deinstitutionalised were an accident waiting to happen. Despite the brave hopes, the birth of the disability rights movement and the grand ideas of politicians, this was a tragedy foretold. Enough people knew that prejudice existed, that the folk memories of people had if anything become stronger because so many disabled people had been put away, regarded and treated as a race apart.
Nobody had asked the British people what they wanted, nor explained to them why this policy was put in place. There were elements of both altruism and political expediency – politicians thought it would save money, but they also felt that the scandals showed that institutionalisation was harmful. It was very harmful, and a grave injustice had to come to an end. But so too was dumping people back into a hostile society with little thought as to what would happen next – which was the rise of disability hate crime, a very modern version of an ancient crime.
In 2000 the Disability Rights Commission was founded, to push for equal rights for disabled people. It had a major job on its hands, listening to and acting on individual cases – access, transport, discrimination – and getting the 2005 Disability Discrimination Act onto the statute book. Sir Bert Massie, the DRC’s chairman, recalled its heyday in an interview for this book. It handled 100,000 calls to its helpline each year, started one new legal challenge each week and won an impressive number of test cases, forcing equal citizenship for disabled people into the public arena for the first time.
In the same year, 2000, in the wake of the Longcare Inquiry, the Care Standards Act reformed the inspection and regulation of institutions. A year later, the Government published a new strategy for those with learning disabilities, Valuing People. Valuing People seemed to set in stone a new compact for people with learning difficulties. At last, they were recognised as citizens, with the right to choice and independence.
Disability rights were in the ascendant. It looked as if the last great civil rights movement was nearing the end of its journey. But the reality was different. For too many disabled people, despite the rhetoric, weren’t valued by all. The brave new world did not celebrate ‘such people’ as were in it once again. Quite the opposite.