DAO editor, Colin Hambrook, interviews Colin Cameron to discover how Cameron’s work is defining and redefining models of disability
You are currently writing up your thesis at Queen Margaret University, Edinburgh. How did the PhD research looking at an Affirmative Model of disability come about?
In 2000, an article by John Swain and Sally French entitled Towards an Affirmation Model was published in the journal Disability and Society. The authors proposed a new model of disability drawing upon the spirit of the disability arts movement and the whole notion of disability pride.
Their starting point was that even if the Social Model was put into practice and all the barriers around were removed to give equal access to employment, inclusive education, public transport, housing, leisure, information and so on, it would still be possible for impairment to be seen as a personal tragedy and for disabled people to be regarded and treated as victims of misfortune.
If the Social Model was disabled people’s political response to the Medical Model, Swain and French’s idea was for a new model which addressed the personal tragedy model of disability.
This personal tragedy model can be seen as the cultural materialisation of the Medical Model. Current cultural representations for example still go right back to the old stereotypes – the pathetic victim, the plucky crip, the monstrosity, the burden, the scrounger, the object of comedy.
So the Affirmative Model was initially proposed as a counter to this personal tragedy narrative of impairment. It is expressed in the voices of people who say, ‘Deafness is normal for me. I wouldn’t want to be other than Deaf.’ Or, ‘I’ve been blind since birth. Why would I want to change? This is who I am.’ Or, ‘I have learning difficulties. I have Down’s Syndrome but I don’t ‘suffer’ from Down’s Syndrome. This is who I am as a person. This is me.’
In many ways, there’s not exactly anything new about it but it’s about putting a name to a perspective developed within the disabled people’s movement and the disability arts movement.
And I’d say it’s important because all this is stuff that’s easily forgotten in the face of the ongoing negativity and patronisation disabled people encounter on a daily basis. Talking about ‘little acts of degradation’, Cal Montgomery says that it’s impossible to go for more than a few hours at a time without someone somewhere reminding her of what they see as her proper place in the world.
It’s also important, I’d say, because very often, still, disabled people find themselves under pressure to keep quiet about their impairments, to try and assimilate as if their impairments weren’t part of who they are or are just a minor part of who they are and to regard their impairments as embarrassing hindrances to be overcome.
The Affirmative Model was proposed as an idea to enable us to recall that, actually, our impairments are a core part of our being and of our experience.
Disability as ‘oppression’
It gets back to this whole charity stuff about ‘seeing the person, not the disability’, as if trapped somewhere inside the terrible prison that is the disabled body, there is really a healthy, ‘normal’ person struggling to break free. It doesn’t work like that.
What I found slightly unsatisfying with Swain and French’s article though was that while they told us what the Affirmative Model was ‘like’ and ‘about’ they didn’t provide us with a set of definitions that said, ‘This is the Affirmative Model.’
As a consequence, for example, when delivering Disability Equality Training to staff in a day centre in Edinburgh, I was told, ‘Oh, I’m so glad you’ve talked about the Affirmative Model. We’ve been using the Affirmative Model for years. We think all our clients are lovely people!’
There was a danger that the Affirmative Model could be seen as being about how lovely it is to be disabled or could be described, as one disabled academic in Glasgow has termed it, as a Pollyanna model. But it’s not about that.
Disability is about oppression. Living with impairment is not always a wonderful experience. There’s pain involved in impairment. There’s darkness and frustration and hurt and isolation.
The thing is though, this isn’t all it’s about. A lot of us would still rather be who we are as people with impairments than eat ourselves up uselessly wishing things were otherwise. Paula Greenwell once said that when people ask her if she wouldn’t rather be ‘normal’, she asks them what makes them think she would want to lower her standards.
A number of times in the years following the publication of the Swain and French article, I asked John, ‘When are you going to develop this model? When are you going to clarify it?’ But this was something John and Sally never really got round to, not in terms of establishing a set of definitions, though they later went a lot closer to doing this in Disability on Equal Terms, published in 2008.
I always felt therefore there was an opportunity for research, study and further development of the Affirmative Model. That it was a good idea that needed finishing. I entered the bursary competition at Queen Margaret University in 2006 and gained a funded place to do a PhD.
The aim of the PhD has been to explore the Affirmative Model and to ask some rigorous questions of it so that it’s a tested hypothesis rather than an untested proposal.
Is this model valid? Does it give us anything we didn’t have already? Can it help us make sense of the lived experience of impairment and disability in ways we’ve not been able to before? Is it necessary for us to have an Affirmative Model and is it a useful thing or is the Social Model enough?
In attempting to answer these questions, I want to come up with a set of definitions for the Affirmative Model. I should though make it clear that I talked with John about this when I started – in a pub in Newcastle of course – and he said it was okay by him to go ahead.
Does anyone like being disabled?
How did you go about researching definitions for an Affirmative Model?
From there I set out to explore the experiences of people with impairments in terms of the tensions involved in developing positive personal and social identities within a disabling society.
How do disabled people manage to feel good about who they are in a culture that keeps on telling us that we’re shit – through charity, through the media, through the way services are organised and delivered, through countless everyday interactions with intrusive strangers, condescending professionals, family members who just don’t get what it’s about.
I interviewed 16 disabled people from the length of the United Kingdom, from north of Aberdeen to the English south coast. Within this group, I have included as wide a range of diversity as possible. Disabled people from isolated rural settings and busy cosmopolitan cities, gay and straight disabled people, disabled people in their 20s, 30s, 40s and 50s. Disabled people from BME and white ethnic backgrounds, disabled people with physical impairments, with sensory impairments, with emotional impairments, with intellectual impairments.
Disabled people with religious faith, others without. Disabled people who were unemployed, self-employed, employed, students, volunteers.
I talked with each person over three interviews. The first was to do with how and where, in terms of their own experiences, people had learned about what disability means. This revealed a wide range of responses. Some had been institutionalised as children and had been sent away to segregated ‘special’ schools out in the country. One had been sent to a residential school for ‘delicate boys’ because he had asthma. It’s done immense damage to this guy.
Others who had impairments from childhood had been sent to schools far from their siblings and peers, 20 miles away from home, picked up each morning on ‘the spazzy bus’, as one woman called it. No real explanations why ever given, just told to get on with it.
With no points of connection, they soon lost all sense of having anything to do with the other kids in the neighbourhood. It was a profoundly isolating experience.
And here we’re not just talking about disabled people in their 50s but others still in their early 20s.
Some, who are now in their 40s and 50s and who acquired or were diagnosed as having impairments in adulthood, struggled to remember ever seeing a disabled person until they were in their teens.
Disabled people just weren’t there, weren’t around. Some said their first remembrance of disabled people was seeing amputee ex-servicemen selling pens on city streets. Only one actually, who grew up in a village community in the west of Scotland, said there weren’t really any issues and that disabled kids were part and parcel of ordinary everyday life.
So you’ve got a vast range of perspectives. It comes across again and again that in ‘special’ schools, kids had no opportunities to develop positive identities as disabled people. They were just told to try to be as normal as possible, to try and be as like ‘these mythical other children’, as possible.
One interviewee was continually encouraged to use his walking frame because, he was told, to use a wheelchair was a sign of ‘having given up’. Normality was talked about incessantly and held up as an ideal to aspire to, but disability was never mentioned. Another, who attended ‘special’ school from the age of 5 to 15 said that she emerged with no idea that she would be considered disabled. She spent many years afterwards denying any personal association with the word.
Everyone’s perceptions of course develop and change over the years. Some of the people I talked with have become involved in the disabled people’s movement. Others haven’t. Those who have taken on board what the Social Model of disability is about have been able to use this understanding as a tool for strength.
Others haven’t really had that opportunity and have never really come into contact with the Social Model or the Movement. For some people there is still a reluctance to describe themselves as disabled because they see this as a personal failing.
As Mike Oliver termed it, ‘The Social Model is a hammer for justice and freedom.’ Some have been able to use this as a framework for understanding what’s going on in their lives: to shift from self-blame to understanding, to thinking that, ‘Actually, hold on. If this kind of thing happened just to me then it might be my fault after all, but if it happens to millions of other disabled people as well then it’s not just about me… it’s about the way society is organised.”
Others remain caught up in negativity about themselves trying to shoulder the weight of structural oppression, not recognising this as structural oppression but thinking of it as the outcome of something wrong with themselves as individuals.
Perceptions of media representation
In the second set of interviews, I asked people to tell me about their perceptions of media representations of disabled people as resources to draw upon in terms of making sense of experience. Overwhelmingly, responses were negative.
People have struggled to find anything that’s positive in terms of representation of disability within mainstream culture.
While it is possible that there are more disabled people on television now than there were a couple of decades ago, focus is still almost always on impairment as a tragedy or difficulty that can be overcome with the right attitude.
As one person put it, whereas television documentaries back in the 20th century addressed social issues, ensuring that a variety of perspectives on a theme were heard and considered, contemporary documentaries about disability always focus on individuals, reinforcing the idea that disability is an individual problem.
He describes them as 21st century freak shows. On game shows like Deal Or No Deal people with impairments try to win money to pay for treatment, ‘So that I can walk again and do everything that normal people do.’ It’s pretty bleak.
The third lot of interviews involved small-scale as-it-happens observations with the 16 people I worked with. This involved reflection upon engagement in everyday activities such as going shopping for slippers, getting across a busy railway station at rush hour, visiting an internet chat room, cooking tea, going out for a meal with friends in the evening, watching Deal Or No Deal.
My main aim in this was to get some insight into the kind of narratives or internal conversations people have with themselves as they get on with the business of mundane life. Is this really experienced as if in a tragic vale darkened by the shadow of impairment? Or do disabled people just get on with life? Perhaps unsurprisingly, for many people the only times when disability figured in their consciousness was when other people around them made obtuse remarks and they had to deal with this.
One thing I learned from this – and it won’t be particularly surprising to a lot of disabled people – not one of the people I worked with has said that they’d rather be somebody else. Not one of them has said that living with impairment makes their life so miserable that they’d rather not be themselves.
While there is acknowledgement of the fact that living with impairment in a disabling society isn’t always easy, and of the fact that opportunities for personal growth and fulfilment are restricted by all kinds of physical and social barriers, no one said that they would rather not be who they are.
I think it’s summed up in the voice of one of the people I talked with who said: ‘It’s very hard for me to imagine myself as separate from my disability. To an extent, the disabilities that I have are the price I pay for being the person I am. And I don’t particularly want to be anybody else. So I’m willing to accept that as a package.’
Historical perspective on Social / Affirmative Models
What are the historical differences between the Social Model and the Affirmative Models of disability?
One of the most persistent criticisms of the Social Model from within the Disabled People’s Movement has come from disabled feminists, like Jenny Morris, Liz Crow, Carol Thomas, Donna Reeve.
Their argument has been that the social model is great for understanding disability at a structural level. It has empowered many disabled people in understanding their experience as oppression. However, the way that it has been used has often ignored or over-simplified the interconnectedness of discrimination with the body.
Impairment, they have pointed out, often involves pain and it often involves fatigue. These kinds of things, they say, get missed out in the Social Model.
I’m not actually sure that this is a valid critique of the Social Model because within both the UPIAS and the DPI definitions, impairment is there as a physical characteristic: as defective limb, organ or bodily mechanism, or as the loss or limitation of physical, mental or sensory function on a long-term or permanent basis.
On the other hand, I do agree that certain positioning decisions were made within the movement to downplay impairment at the expense of emphasising barriers. This was in order to ensure both that disabling barriers got addressed and to avoid the possibility of care industry professionals gleefully seizing on the perception that it was all about our bodies after all. But these don’t necessarily invalidate or weaken the Social Model.
Nobody is suggesting that the Affirmative Model should ever be considered a replacement or substitute for the social model. The Affirmative Model builds upon the Social Model but could never have emerged without the Social Model.
As Allan Sutherland said, without disability politics we would never have had disability arts. Lory Britt and David Heise suggest that when we shift our understanding from one of personal abnormality to one of oppression, we first get angry. Not simply because of an unjust system but because we’ve been made to feel ashamed of who we are. When we come together to express this anger collectively, for example through disability arts, there emerges a sense of shared identity and pride.
But why limit ourselves to the use of one tool when we have the creative ability to fashion others which suit different purposes? Whereas the Social Model enables us as disabled people to explain disability in terms of structural social relationships or in terms of ‘the big picture’, the Affirmative Model is intended as a tool with which to gain an understanding of our situations in the midst of life.
Identity isn’t something solid, fixed, once and for all. Identity is something that is fluid, changing, that takes shape through the decisions and choices we make in everyday life.
Some days we can choose really badly and some days we can choose really positively in terms of how we relate to ourselves. I suppose what it comes down to is that, while mainstream non-disabled culture only ever offers us negative images and terms to describe ourselves, the affirmative model offers a different possibility.
Affirmative Model definitions
So what Affirmative Model definitions have you devised?
I have defined impairment as: physical, sensory, emotional and intellectual difference divergent from culturally valued norms of embodiment, but which is to be expected and respected on its own terms in a diverse society.
While avoiding Social Model definitions of impairment as ‘defect’, ‘loss’ or ‘limitation’, I think that this definition allows room for both the perspectives of disabled people who wish to assert their rights to be recognised as different but equal plus the perspectives of, say, disabled feminists who have drawn attention to the fact that impairment can involve pain.
Disability I have identified as: a personal and social role which simultaneously invalidates the subject position of people with impairments and validates the subject position of those identified as unimpaired.
I am suggesting here that people with impairments pay the ontological price – in terms of their sense of being – that covers the cost of the relative security of identity of non-disabled people.
Being normal involves being and becoming the kind of person society requires. Being disabled involves being positioned as subjects of disabling discourses and narratives so that people with impairments are always made conscious of how far short of this ideal they fall.
Whereas the Social Model identifies disability as a relationship which only excludes, from having considered everything that the people I’ve talked with have said, I would suggest that disability is something which is actively produced.
This can work in two ways. Either in terms of accepting and living with the negative projection of society, giving up aspirations to personal power because the weight of oppression is just too heavy to deal with. Or in terms of constantly trying to prove that you are not held back by your impairments, that you can achieve despite your impairments.
Either way, it involves an enactment of impairment as an undesirable condition and an attitude towards impairment as a negative characteristic, plus at the same time a validation of normality.
The Affirmative Model definitions I’ve tentatively proposed create a framework which makes it possible to regard impairment as a characteristic of difference, not inferiority.
At the same time, my definitions recognise that impairment is experienced within the context of disabling interactions and representations which would always deny us the validity of our experience or that would have it that there is nothing to be gained by the experience of impairment.
It’s not about wanting to be accepted as normal
What kind of impact would you like to see the Affirmative Model having on the disability arts movement?
As I said earlier, the Affirmative Model has emerged from the disability arts movement. Hopefully it will also feed back into that movement. Although we’re going back 20 years ago now, it goes back to Johnny Crescendo’s old song, I love my body. It’s the only one I’ve got.
As Jane Campbell said in 1996, the disabled people’s movement is a jigsaw where each part is vital for the whole picture to emerge. The disability arts movement was at its strongest when it saw itself as thoroughly inseparable from the wider political movement.
It was about strength and identity and the enriched sense of self that disabled people got from coming together. Collectively, we were able to identify and challenge disability and disabling relationships and discourses and representations as oppressive.
It was about writing a new story which rejected categorisations of us as useless and tragic. We said we are who we are and we want to be let in but on our own terms. Not on non-disabled people’s terms as second-rate versions of them.
It wasn’t all about saying disability is the most important thing in life or that it’s the only thing in life. It was about addressing oppression and if you’re going to address oppression, you’ve got to bang on about stuff.
One young disabled woman I interviewed says that while she has heard of the Disabled People’s Movement and disability arts she has no sense of there being anything there for her now. This is something that she considers happened before her time and is not something she feels part of.
What disability arts was all about was transgression and a refusal to accept the definitions others would impose upon us. It was a celebration of what was perceived as our deviance. But, as Jean Baudrillard put it, the most effective way for a society to deal with transgression is to give it ‘a mortal dose of publicity.’
Things like the very limited and partial increase in the involvement of disabled actors in television for example has been enough to dampen the anger that was there within the movement. There’s a perception that if you want to change things, you’ve got to be in there getting involved. But getting involved doesn’t change things. It just sucks you in.
Reality TV programmes like Beyond Boundaries regurgitate every stereotype going. Where TV dramas do occasionally feature disabled actors, they still mostly focus upon impairment as a problem.
It’s difficult because obviously disabled artists want their work seen and regarded and valued and appreciated with social contexts as wide as possible. And quite rightly, they want serious remuneration for serious work. Very often there’s a perception that remaining within the world of disability arts involves remaining within a ghetto.
About a month before he died in 1998, Ian Stanton said to me that he believed there would always be a need for space for disabled people to come together and share their own experiences, stories, songs, performances, images with other people who have been there too.
Why this space should necessarily be identified as a ghetto, I’m not sure. I’d say rather that it’s about a shared culture. While it’s incredibly important that disabled people have access to the mainstream, perhaps the mainstream is over-rated. The mainstream is about Ant and Dec, Strictly Come Dancing and The X Factor.
I’d suggest that the Affirmative Model offers a renewed framework for making sense of the individual and collective experience of impairment within a disabling society, something that’s maybe been lost in this whole pursuit of the mainstream.
Again, there might be more access to mainstream culture than there was 10, 15, 20 years ago but disabled people are still treated with pitying condescension, polite discomfort, furtive embarrassed glances and outright hostility. We might be able to get in now but we’re certainly still made to feel unwelcome.
This is what disability oppression is about. It’s still there and it’s still part of the everyday experience of most disabled people. Certainly if the experiences of the 16 disabled people I interviewed are at all representative.
One of the central themes of disability arts should be to describe this oppression. To identify it, to record it, to talk about it, to write about it, to sing about it, to paint it, to portray it through dance, film, digital media, photography. To laugh at its absurdity.
Paddy Masefield describes disability arts as arts produced by disabled people which talks about the truth of disability experience. The movement needs to be about reaching and embracing and involving disabled people who have never heard of the Social Model.
We need to reach disabled people who are dragged down by internalised oppression and who believe that the road to success involves distancing themselves from other disabled people and doing their best to convince themselves and everybody else that they are something they’re not. I hope the Affirmative Model can feed into this process.
How effective can the Affirmative Model be?
My hope would be that the Affirmative Model could offer an opportunity to address the fragmentation and isolation that we see within the Disabled People’s Movement. But for it to have impact, it needs to be taken up and used as a tool.
In the first instance, people need to know about it. I’ve had a number of articles about the Affirmative Model published in academic journals which is one way of disseminating it. But really, for it to have most impact, it needs to be taken up and used as a framework for example informing disability arts practice, workshops, policy development.
It can be an extremely effective tool in terms of disability arts and the disability arts movement, because it is what the disability arts movement was about before it started fragmenting. It is about the spirit of disability pride.
Finally, what is your viewpoint on what’s happening among impairment groups? The way some have sort of split off saying, ‘We’re not disabled.’
That sort of thing has been going on all the time and is the result of a situation in which disabled people have had no shared culture. Of course, the charities have had a major role in this, treating the interests of different impairment groups as if they’re separate and unrelated.
I mean, the charities say they’re changing and they’ve certainly hijacked the language of the Social Model. But you have to judge these organisations by what they do rather than by what they say.
For instance, the RNIB in Edinburgh has just announced they’re starting up an open-top city bus tour where people will be asked to wear blindfolds so that they too can gain an understanding of the plight of the blind. It’s ridiculous.
In many ways we’re going backwards not forwards so it’s no surprise that different impairment groups are saying, ‘We’re not disabled. That’s them. They’re the ones who have something really wrong with them.’
In a culture where impairment is incessantly portrayed as individual tragedy, this kind of thing is inevitable. That’s another reason why the Affirmative Model is needed.
I attended a workshop organised by the Scottish Arts Council in Edinburgh earlier this week to consider the state of deaf and disability arts in Scotland. Most of the people attending were young disabled artists, though Rosita McKenzie (formerly Green) was there as a photographer, ensuring there were some links with bygone days.
It became apparent during conversations that people had never heard of Paddy Masefield, Simon Brisenden, Barbara Lisicki, Sick Cow, Tragic Mike, Ian Stanton, Johnny Crescendo, The Tokens, The Invisible Cabaret, The Fugertivs.
Fair enough. These are all English artists, but the point that stood out for me was that there was no sense of a history of the disability arts movement. No sense of being part of something that had gone before. Names have been forgotten or have never even been known. Disability arts and culture never had time to develop deep roots because people wanted it all to happen overnight.
While the mainstream perspective is the only one that is heard, it is not surprising that disabled people don’t want to talk to each other. If we no longer talk to each other, what briefly flourished as a movement will simply disappear up its own arse and the world shall carry on as it always has done.
I’d suggest that disabled people and disabled artists have a responsibility to talk about impairment and disability. Not in the terms within which dominant culture understands these things but in terms of difference and the suppression and stigmatisation of difference.
If we forget to do this, or decide that we’ve had enough of it, then we allow oppression to continue and will leave generations of disabled people yet unborn to experience being fucked up and shat upon in the way that we have.