Disabled activists call for a refreshed social model to ‘bring it back to life’

Disabled activists have called for a re-examination of the social model of disability to produce a “reinvigorated” version that will bring together disabled, Deaf and autistic people to challenge the oppression they face.

The call came at an online meeting hosted this week by Disabled People Against Cuts (DPAC).

The meeting follows ideas discussed in a new book by DPAC activist Ellen Clifford, The War On Disabled People, in which she argues that a “reinvigorated” social model could “bring it back to life” and “play a fundamental role in taking forward dis­abled people’s resistance”.

Clifford (pictured, top right) told the meeting that the social model was “never intended to be a perfect theory of disability”.

She said: “The whole point of it is as a tool for building a collective identity in order to unite people who face similar barriers as a result of the socio-economic structures we live under.”

For that reason, she said, refreshing the social model “must be carried out as a collective endeavour” by disabled people with a range of experiences, but who all experience disablism and aim to fight social injustice.

She also stressed the importance of a new social model of impairment, which would address the existence of illness, pain and distress, and how people deal with them.

And she said there needed to be a way to include those who face disabling oppression but do not accept the term “impairment”, such as many people with mental distress and those who are neurodivergent or Deaf.

She reminded the meeting that charities had “heavily watered down” the social model, had “paid lip service to it” and did not believe in a “radical transformation of society”, and for that reason would likely not agree with a reinvigorated social model.

But identifying such people, she said, “will enable us to more easily identify who our allies are”.

A series of contributors to the meeting explained the importance of the social model and its continuing relevance, with many backing the need for it to be “refreshed”.

Many pointed to the new reality facing disabled people, compared with the 1980s, when Mike Oliver named and developed the social model of disability, following work by other disabled people through the 1970s, including Vic Finkelstein and the Union of the Physically Impaired Against Segregation (UPIAS).

Denise McKenna, co-founder of the Mental Health Resistance Network, said the social model was “a powerful campaigning tool”.

But she agreed that it needed “reconsideration to take account of how the disabled people’s movement has expanded to include a wider range of impairments”.

She also argued for a social model of impairment, which would explain that the causes of mental distress originate with society.

McKenna said the medical model of disability was “very much alive” for those with mental distress and was even “enshrined in law” through the Mental Health Act.

She said: “I would like to see a reinvigorated social model that is more inclusive of mental distress and a social model of impairment that will give us a language to speak of the disabling effects of what we understand as impairment itself.”

Catherine Hale, founder of the Chronic Illness Inclusion Project, said the social model was nothing “if it is not a tool for uniting disabled people to take collective action”.

She said that people with energy-limiting chronic illness see the main form of their oppression as being “invalidation and disbelief” of their experiences of their impairment.

She said this community was a large one but was in many ways disconnected from the disabled people’s movement, with many of its members not identifying as disabled people, often because they experience “hostility and violence” if they try to do so.

Hale said that, for many people with severe energy impairments, no amount of action to address societal barriers would “allow us to leave our homes or even our beds”.

She added: “That reality has often felt like it is too difficult for the disabled people’s movement to acknowledge.”

And she said many people had a problem with the language associated with the social model, rather than its underlying principles, with the idea of being “disabled by society and not by my body” being “particularly jarring for people with chronic illness”.

She said: “If we are going to unite to fight the war on disabled people, we need the movement to include our experiences of both impairment and disability.

“I really hope today leads to further dialogue.”

Kerena Marchant, a Deaf film-maker and activist who fought the Basingstoke seat for Labour at December’s general election, said the government and capitalism, which were eroding Deaf and disabled people’s rights, were “afraid” of the social model because “they know that through that we can reclaim our rights”.

She said she did not consider herself to have an impairment “because the fact that I cannot hear doesn’t matter to me because I have my own language”.

Marchant said she faced a barrier in accessing the disabled people’s movement because much of its activism took place in spoken English.

She said: “If that barrier was removed… it would make it so much easier for Deaf people to join that movement and move forward, supporting the aims.”

She said that had to happen because Deaf people were discriminated against because they were Deaf, and so they needed the social model.

Autistic activist Chris Pike said the social model provided a “sense of solidarity” and “community” to disabled people, and he backed the call for a “reinvigorated social model”.

He said: “Fundamentally the social model is about coming together as a community, recognising that we are not the problem, and that we need to fight for our liberation.”

Another contributor was Bob Williams-Findlay, whose book about his own experiences of discrimination, his political awakening and the wider political emancipation of disabled people, More Than A Left Foot, was published last month.

He said it was important to note that disability had “different meanings in different points in history”.

He said the social model was “about what kind of society we live in” and “how it imposes restrictions” on disabled people, but it was also a way of thinking about “how we deal with those restrictions that obstruct us and [how we] transform them”.

He said: “Therefore, we can’t reinvigorate the social model. What we can do is create a new one, looking at a new set of circumstances but still using the methods we have within the social model.”

He said this was because the nature of the relationship between disabled people, the state and society had changed since the 1980s.

Kate Caryer, a founder member of The Unspoken Project, said she believed the social model was “the most powerful tool that we disabled people have in our arsenal” and that this power “had never been more needed”.

She said: “It makes us realise that we are not the problem because we have impairments, but also for us to change the world.

“Social model thinking unites us in ways that having the same impairments does not.”

She added: “I believe that people with severe communication impairments are not usually engaged in disability politics so they don’t have access to radical ideas like the social model.

“This is because non-disabled professionals, speech therapists and special school teachers have a stranglehold over the provision of communication aids and instructing in how to use them, and they set up organisations to defend their own professional interests that treat disabled AAC-users [users of augmentative and alternative communication] in the paternalistic way that we all recognise in the disability charities.

“With the social model we can change this patronising world.

“Too many young people are sucked into the old paradigm of believing disability is something to be ashamed of.

“I have met many non-speaking kids who are ashamed of having a communication aid because they say it makes them look disabled.

“We need the social model to save them.”

Rick Burgess, a disabled activist with Recovery in the Bin, Manchester DPAC and Greater Manchester Coalition of Disabled People, also called for a reinvigoration of the social model.

He said the social model “probably does need a bit of dusting off”, while there was a need to listen to those who have previously not felt included in the social model and change it so they do “feel represented and included”.

Burgess (bottom left) said there had been a “wholesale assault on our rights and our very lives” over the last decade.

He said there were many institutions with “good incentives to ignore us” and to “put their model in our place”.

He said: “Our model is the one that we thought of, that we figured out, based on our lives.

“The first lesson of it… is ‘nothing about us without us’. It is our model, we run our organisations, and we say what we need to say about how we want the model to reflect how our lives and our experiences are.

“We need to get out and get this idea to more people because it is a very, very powerful liberation tool.”

Andrew Lee (top left), director of People First (Self Advocacy), said he hated “with a passion” that when big issues were raised, the media “automatically turn to the big charities”.

He said a key barrier faced by people with learning difficulties was access to information, as “information is power”, and that society was “frightened of us having the same amount of information for us to make decisions for ourselves”.

He said: “The challenge for the 21^st century is everybody that is marginalised, everybody who is cut off, if we come together as one unit we can take on society.”

Deaf campaigner Paul Ntulila (bottom right) was another who said the social model was needed to influence the government and other institutions but that it needed “refreshing” as “society has moved on”, including through government cuts which have created “more and more barriers”.

He said it almost felt as though Deaf and disabled people were currently in “two camps”, and he called for them to “come together more collectively”.

He added: “I appreciate the sentiment of trying to define ‘impairment’, but I still find the word itself very difficult.

“For example, ‘hearing impairment’: that implies damage. I would prefer to find an alternative word around this concept.

“The next steps would include ways that we can make sure the social model can be employed and talked about in relevant, real world-applicable ways, particularly if working outside DDPOs [Deaf and disabled people’s organisations].”

Dorothy Gould, from the new user-led, rights-based organisation Liberation, said a social model was “very important because it challenges the whole idea that the only way to understand mental distress and mental trauma is via an individual illness model”, something which does not fit with the personal experiences of many survivors of mental health services.

But she said many of those in the survivor movement also had concerns about the social model, partly because of a lack of focus by the disabled people’s movement on people being detained in mental health institutions and forcibly treated under mental health law.

She said many survivors also had a problem with the idea that mental distress or trauma were impairments, as they saw that distress being caused by society.

She said: “We want a social model that is wide enough to embrace our identity as well.”

She said there was a need for an “in-depth and imaginative” examination of the meaning of the social model, otherwise “joint action just won’t be effective in the way it needs to be… when we are more oppressed than ever and need to work more than ever to work together”.

Naomi Care, who has a chronic illness, said she had “never felt at home with the social model of disability”, because through years of being housebound due to fatigue and pain and being unable to access work, education or a social life, she felt she was disabled by both society and her impairment.

She said: “There were times that no amount of barrier removal would have been adequate to include me.”

She added: “In the future I would really like it if chronic illnesses were considered and really understood in terms of their day-to-day suffering and how they can completely disable a person one day and the next day that person might be able to come out… and do all the things they normally can do.”

Summing up the discussion, Clifford said it had showed that disabled people were “better as a collective”.

She said: “This is just the beginning of a discussion.

“There is a consensus…about the need to do some work on this, to look at the barriers that have stopped specific groups from being involved. There is an umbrella under which we can all sit.”

*Next week, DPAC will bring together disabled activists from across the world for an online discussion on the impact of the COVID-19 crisis on disabled people, and links between how disabled people have been treated and eugenics, including participants from Greece, Uganda, Sweden, Bulgaria, Belgium, USA, Hungary and Bolivia. The session will take place on Monday (13 July) from 6.30pm to 8.30pm.

Picture of Ellen Clifford by R N Clifford

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