The Social Model – a force for change
“Disabled people is anybody with any impairment who is disabled by the society in which they live.”
Alun Davies
“It wasn’t your impairments that stopped you. It was the way that society was constructed. It was the way that the buses were inaccessible. It was the way that you couldn’t get into buildings.”
Meryl Gaskell
Drawing inspiration from the civil rights movements of the 1960s and ’70s, the liberation struggles of Black people, women, lesbian and gay men, and working-class issues, the Disabled People’s Rights Movement saw Disabled people starting to question society’s assumptions about them, and how those assumptions impacted on their lives. The Movement itself did not emerge as a political issue in the UK until the early 1990s, but the beginnings of disability activism in Bristol have their roots in the 1980s. Ruth Pickersgill recalls, for example, that “in about 1988, there’d been a group meeting called the Bristol Centre for Integrated Living Group – a group of Disabled people who were wanting to find ways to live independently [who] were looking to all the independent living groups around the world, particularly in Berkeley, California… to try and see what a model of independent living would be.”
“People would live from the age of four to their death in the clutches of this disgraceful organisation.”
Ian Popperwell
Independent living was just one of many of the Movement’s aims. Penny Germon recalls the full agenda. She says: “Our starting point was to campaign for equality in our lives. We were looking for inclusive education. We were looking for independence. We wanted direct payments. We wanted to be able to go to work. We wanted housing. We wanted access to public transport. We wanted to have our culture and our arts recognised and to have access to culture and arts; to have our story understood and written; to see ourselves in media and in the world around us. And [through changing] attitudes and through democracy, for the environment to be accessible.”
The Union of the Physically Impaired Against Segregation (UPIAS) emerged as one of the early disability rights organisations, establishing the principles behind the Social Model of Disability, which was developed by Disabled people to challenge the Medical Model – the prevailing view that disability was a medical problem rather than a socially constructed phenomenon. The Medical Model says people are disabled by their impairments or differences, looking at what is ‘wrong’ with the person, and what might be ‘fixed’ or changed by medical and other treatments, rather than at what the person needs, creating low expectations, loss of independence, choice and control in their own lives.
Alun Davies explains: “Disability has nothing at all to do with impairment. ‘Disabled’ is not the impact of our impairments on our functioning. Disability is a distinctive form of social oppression, ranging from the economic, social and political construction of society, and if you eradicate disability what you would be left with is people with impairments. So impairment will always exist, impairment is a natural phenomenon, whether it is created by heredity or accident or trauma. Impairment will always exist. But disability doesn’t need to exist. It is possible to eradicate disability. Disabled people is anybody with any impairment who is disabled by the society in which they live.”
Meryl Gaskell says the Social Model was central to her work with Dial-A-Ride, a transport service for people identifying as Disabled that began in around 1990 – with most of the staff and all of the committee members themselves Disabled people. She says: “That was a fundamental thing about the way it was run, it had to be disability-led to provide services for other Disabled people… so that was the Social Model in action. The idea that it wasn’t your impairments that stopped you. It was the way that society was constructed. It was the way that the buses were inaccessible. It was the way that you couldn’t get into buildings.” She recalls a research project in which a small group of disabled people were asked “What would make the biggest difference?” She says: “They said, ‘Well, we just want to get out’.
“It was about people just leading ordinary lives, about being able to get to the shops, being able to go and visit friends. I mean to go to park. I mean all sorts of things that some people take as for granted, [but] Disabled people can’t do if they don’t have the transport to get there. So certainly it benefited an awful lot of people in Bristol.”
Ian Popperwell says that before the Movement began to have in impact, “wheelchair access, physical access, informational access, Deaf people’s access, all those kinds of things they weren’t even considerations. All the decisions were made by generally fairly arrogant professionals whose training had taught them that they were experts over Disabled people’s needs. And the notion of Disabled people wasn’t thought about in the way we think today. The word ‘handicapped’ was used a lot. Professionals in social care, education, health were all around very specific clusters and impairments. So you’d have people that would work with ‘the blind’ and maybe ‘partially-sighted’ as they called it. They wouldn’t touch people that had muscular dystrophy and it was crazy. There were charities. Hundreds of charities followed every impairment group and claimed to have the expertise over those groups and none of them had any Disabled people on their management committees. Occasionally they’d have the odd token person somewhere as an office junior or something and patronise the hell out of them.
“In Bristol, we had some key charities. There was Scope, used to be the Spastic Society, the Arthritis Care, it was a hateful organisation, the MS Society, again, another hateful organisation, the Bristol Royal Society for the Blind, which provided services from nursery through to a school, through to adult education, they had a workshop that people would go to throughout their working life. They’d live at a hostel in [a part of Bristol] and there was even an old people’s home. People would live from the age of four to their death in the clutches of this disgraceful organisation. And so that was very much this whole charity thing. Charities claiming the expertise and having the expertise to our issues as they thought it. So we started to challenge them. They were furious.”
Ruth Pickersgill says her take on the Social Model within education is “not focusing on the problem and the impairment, but getting rid of the barriers. And so rather than saying this person’s got this impairment and therefore they need this, this and this, it’s more about saying ‘well this school needs to be inclusive, so it needs to do this, this, and this to accommodate all pupils’. And that might be pupils who are left-handed, so need different scissors, to the spectrum of somebody who’s a wheelchair user who needs adaptations. And for me it’s also about the difference between integration and inclusion. You put a Disabled child into a mainstream setting but you expect them to fit in with everything that everyone else does. Whereas inclusion is about changing the school, and the whole way the school operates, to meet the needs of the children and the Disabled adults. Because people forget that there are loads of parents who are disabled, or teachers who are disabled, and they don’t ever get a mention. So if you made your school inclusive, then there’d be a whole lot of parents who’d be able to be far more involved in the life of the school than they can normally, or grandparents, or anybody else.”
Changing attitudes is a complicated business, and, as in any movement, there were, and still are, some lively debates about the Social Model.
“My argument was, and to some extent still is, that as a movement in the way that we applied it, we tended to set aside impairment.”
Liz Crow
The Disabled People’s Movement began with a somewhat restricted remit, and, it might be argued, the Social Model still falls short of fully embracing all aspects of disability. The Movement originated, says Liz Crow, with “white men, predominantly, with spinal cord injuries”, because, through education and income, they were the ones who were able to “come together and talk politics and create a movement”. This meant, says Ruth Pickersgill, that the initial focus of the British Council of Organisations of Disabled People was on [single] men who were wheelchair users, looking at independent living, physical assistance and PAs. She says: “They weren’t necessarily thinking about the wider issues that women wanted to think about [like] having children. And they weren’t also necessarily thinking about what independent living meant for people with learning difficulties or mental health issues.”
Ruth recalls that when she first came across the Social Model in about 1985, there was discussion about whether it worked for all Disabled people. She says: “There would be discussions about whether people who had mental health issues, for example, considered themselves to be disabled, and whether they followed the social model; whether Deaf people considered themselves to be disabled and whether they followed the Social Model.”
Hilary Sutherland was involved in early activism in Bristol on issues that were indeed very specifically about Deaf people – campaigning for BSL to be used for Deaf children, for example, because, she says, “we’d known for a long time that sign language helps Deaf children and Deaf people to communicate fluently” – and remembers at one point “maybe two or 300 people marching through Bristol”. This, she says, was specifically “about recognising Deaf people and recognition of Deaf pride”, and says she sees direct parallels between that activism and the earlier Black Power movement, both in terms of discrimination, and in working through anger to find a sense of pride.
Liz Crow praises the Social Model as a “completely transformative mechanism” and feels that it has “saved lives over the years” – but in 1992, she wrote an article for [the Greater Manchester Coalition For Disabled People’s] ‘Coalition News’ which, set out reservations [about the way it was being interpreted and used]. She says: “My argument was, and to some extent still is, that as a movement in the way that we applied it, we tended to set aside impairment.” Giving the example of her falling ill in her 20s and having to spend years in bed, she says in that situation, [for much of the time], the main obstacle was not discrimination, nor structural considerations, but ‘being ill’ – but when she admitted to [a fellow] activist that “being ill can be really hard”, he told her “You can’t say that”. She says “If we couldn’t have those conversations supportively with each other, because of the way we organised, we were doing ourselves a terrible disservice.”
“The critical thing was, this is a model that came out of academia. It is an incredibly useful way of explaining things, [and of simplifying them to their essence]. But then ultimately, that becomes applied, and sometimes it becomes distorted… and that has made us less effective than we could have been. It has prevented us from supporting each other and including our widest membership as effectively as we could’ve done.” Chronically ill people are, she says, impacted by this. Referring to work being done currently by Catherine Hale in relation to chronic illness, she says: “Sadly, it has become really clear that the majority of chronically ill people either never come across the Social Model or experience it as something that really doesn’t have much to do with them. Either they feel excluded from the movement, because of the way the movement presents itself a lot of the time, or they understand a version of the Social Model that I’d argue is not the social model, but that basically says all your difficulties are structural: if we remove the structural barriers, there are no lingering difficulties. And of course, what people are saying is, ‘I’ll still be ill’.”
For Alun Davies, a social model definition of disability covers all Disabled people whatever their impairment. He is concerned about the more recent use of the term ‘Deaf and Disabled people’s movement’. “The social model [was] effectively based on how views towards disability and the social structure developed, [and is rooted in understanding that] “society … disabled me on the grounds of my impairment rather than my impairment being the issue. I still believe in the revolutionary intent of the social model [and that] there is only one movement: the Disabled People’s movement.”