An open letter to the editor of Exceptionality, and to Prof. Kauffman and Dr Bader regarding the “Extremism and Disability Chic” article (issue 28.1)

Last week, a few people posted about an article by Kauffman and Bader, published in the journal Exceptionality, at the end of last year. I’m not linking to it because those links are used to calculate impact – but the abstract alone might be enough: “Disability and extremism are also changeable concepts, depending on comparison to social norms.  … disability itself should not become chic”. Emma Kennedy has kindly put screencaps online here though. I was gobsmacked, and then infuriated. So were lots of other people – including Emma, Amy Kavanagh, and Steph-Hannam-Swain. The four of us got together and wrote this open letter, below.

If you’d like to add a supporting signature (before 7th May), please fill out the form here [Google form link] or drop me an email.

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Dear Dr Cullen, the editorial board, Professor Kauffman and Dr Bader,

We write to you concerned that you have published under the umbrella of ‘research’ an article that not only perpetuates negative and harmful stereotypes of disability, but erases the lived experience, testimony and indeed scholarship of a great many disabled people. We are concerned that, in addition to perpetuating stereotypes, this reflects poorly not just on the authors, but on the journal’s editors and peer reviewers.

We have a number of points we would like to challenge the authors and editors on. These points are rooted in our knowledge as researchers, educators and disability rights campaigners – and in our lived experience as disabled people. We will cover three main points: firstly, that the authors assume disability is a lesser version of normal (i.e. non-disabled); secondly, their proto-eugenicist assumption that disability is actively harmful to society and should be eradicated; thirdly, that the authors dismissal of equality measures (and the need for further gains) erases existing, and significant, structural inequalities for disabled people.

 

  1. Assuming disability is a lesser version of “normal”

At the core of the article is the assumption that “normal” and “non-disabled” are synonymous, and that to be normal is to be better than to be disabled. This is the ableism the authors so casually dismiss as “extremism” – to the point that they deny it as a social structure affecting all lived experience. This is ironic considering the paper is rife with this same ableism. To explore our point here, we quote Professor Bill Hughes, who wrote in 2012 that

“ableism …. encourages us to live in the false hope that we will not suffer and die, to adopt a perspective of invulnerability, to confuse morality with beauty and to see death, pain and disability as the repulsive woes of mortality rather than as the existential basis for community and communication” [i].

We contend that the conflagration between “chic” and seeing your impairment or disability as “not a bad thing” is dangerous. This problematic imagining of disability positivity as a “chic” fad is built upon the assumption that disability is a “lifestyle” or a “choice” – and ignores that disability is a lived experience, which for many disabled people is part of their selfhood.

In writing “but we do not consider a disability a gift to anyone, the person who has one or anyone else.” – the authors seem to suggesting that no part of the lived experience of being disabled is positive and can bring positives to those around them – despite many disabled people, their families and carers expressing many ‘positives’ of disability [ii]. Indeed, research shows that non-disabled people regularly underestimate the satisfaction that disabled people have with their lives and overestimate the ‘suffering’ or negativity of the disabled experience [iii].  Much of the “suffering” caused to disabled people, carers and families is due to society’s lack of support and acceptance – not the condition itself.

In refiguring disabled people’s self-esteem as deliberate contrarianism the authors effectively deny disabled people the right to value themselves except in (negative) comparison to the ‘normal’ of non-disability.

 

  1. Assuming disability as actively harmful to society

Kauffman and Badar develop their argument that disability is a “bad thing” by representing disability as actively harmful. The authors continually position mental illness or learning disabilities as the cause of people deliberately inflicting harm on others. This only makes sense if the authors are presuming that all disability is not just negative, but actively evil, and that disabled people hold no positive value for the communities in which we live, the friendships we develop, and the families we are part of. This is an insultingly negative view of disability, and one which reflects the authors’ ableism and their assumption that different is lesser.

Indeed, the authors assumption of disability as socially problematic and unwanted means that they assume that all intervention in the lives of disabled people – including pre-natal testing and termination – is effective, wanted, and necessary, without considering what happens when intervention is unwanted, when it is the site – or cause – of abuse, or a cause of further harm. Many treatments result in pain and psychological damage to those who are subjected to them with little to no functional gain.

When combined with the authors’ assumption that disability is overwhelmingly, relentlessly negative – not just for individual people, but for society as a whole – it is impossible for us to ignore that the authors are straying into eugenicist arguments and beliefs. This deeply problematic argument is further compounded by the disturbing comparison between the alleged “extremism” of individuals positively embracing their disabilities, and the Nazi regime. A regime which portrayed disabled people as “useless eaters”, and justified the deliberate murder of 300,000 disabled people under Aktion T4, a precursor to the larger holocaust.

We categorically reject the idea that to be disabled is undesirable and should be avoided at all costs. This is an uninformed ableist assumption which has concerning connections to the Eugenics movements.

As well as forwarding ableist and eugenicist views, the article reveals Kauffman and Badar’s contempt for the work of disabled scholars and activists, who have spent decades challenging the fundamental premise that disability is abnormal, negative and wrong.

 

  1. Dismissing equality measures as ‘special treatment’.

Kauffman and Badar dismiss the social model of disability as viewing disability as ‘simply a matter of bias on the part of others’. On the contrary, the UK social model views disability as created not by “simple bias” but by structural issues. For lots of disabled people their impairment is not the main thing that disables them: rather they are disabled by lack of accessibility measures and refusal by society to prioritise the measures needed to make life accessible. In blunt terms, it’s the stairs that are the problem, not the person on crutches. Society’s attitude to disabled people is not “simple bias;”- for those of us whose bodyminds cause us distress, pain, and other experiences presumed to be negative the lack of resources and social attitudes towards us as disabled people further our disablement.

It is this misunderstanding that leads the authors to write about improvements in society for disabled people – the parking spaces, the increased visibility – as though they are a bad thing. When they say that “in a fair society, [disability] grants no special privilege or treatment,” they do not seem to consider that these things are lessening an inequality. In an ideal society, where disability is just a personal feature, there must be resources and systems in place to counter any disabling effects of an impairment; this is not ‘special treatment’ but equitable treatment.

These moves are making disabled people play on a more equal field as non-disabled people, a field that has been, and continues to be made unfair for no good reason. Kaufmann and Badar’s claim that “laws have made nearly all public places to people who have disabilities” and that the law “guarantee[s] appropriate public education for students with disabilities” – is not reflected in reality in the US or in the UK. Disabled people are still systematically segregated from society [iv].

The authors claim that the “diversity in disabilities […] may make the expression of ‘disability pride’ problematic,” erasing the solidarity that disabled activists create and experience on a daily basis, the very solidarity we have experienced. As the article they cite [v] argues convincingly, diversity does not preclude disability pride. It is this that the authors have failed to understand. It is possible to have pride in a disability, whilst acknowledging the ongoing impact of negative attitudes, barriers to access and challenges to full participation in society. Having disabled people in the world brings with it a rich tapestry of experience, ideas and outlooks on life and situations, if we lost these voices the world would be a worse place for it.

It scares and disgusts us that people with such openly antagonistic, ableist and Eugenic beliefs work in educations and have been given a forum to publish such things seemingly without any challenge. We believe this speaks to a fundamental problem in the academy. At a time when support for disabled students is being cut, and many disabled people are still unable to access higher education due to the failure to provide reasonable adjustments, it is concerning that these views are not only openly held but actively endorsed by publication in an academic journal.

As disabled people – and for some of us, as educators, we hope our letter has provoked serious reflection on your part. We strongly encourage you to consider the attitudes and approaches you have demonstrated in the writing, review, and publication of this utterly shameful article – and we hope future editions of Exceptionality will reflect a positive change.

 

Signed:

Dr Emma Sheppard, Lecturer in Sociology, City, University of London

Ms Stephanie Hannam-Swain, Lecturer in Education, Sheffield Hallam University

Dr Amy Kavanagh, Disability Rights Activist

Dr Emma Kennedy, Senior Educational Development Adviser, Queen Mary, University of London

 

 

 

 

[i] Hughes, Bill, 2012 Civilising Modernity and the Ontological Invalidation of Disabled People. In: Goodly, Dan, Hughes, Bill, and Davis, Lennard (eds), Disability and Social Theory: New Developments and Directions, pp 17-32.

[ii] Lodewyks, Michelle R., 2015. Strength in Diversity: Positive Impacts of Children with Disabilities. The Vanier Institute of the Family. Available at: https://vanierinstitute.ca/children-disability-positive-impacts-children-family/).

[iii] Gerhart, Kenneth A., Koziol-McLain, Jane, Lowenstein, Steven R., and Whiteneck, Gale G., 1994. Quality of Life Following Spinal Cord Injury: Knowledge and Attitudes of Emergency Care Providers. Annals of Emergency Medicine, 23.4, pp 807-812

D.Lulé, D., Zickler, C., Häcker, S., Bruno, M.A, Demertzi, A., Pellas, F.,Laureys, S., and Kübler, A., 2009. Life can be worth living in locked-in syndrome. Progress in Brain Research, 177, pp 339-351

Albrech, Gary L. and Devlieger, Patrick J., 1999. The disability paradox: high quality of life against all odds. Social Science & Medicine, 48.8, pp 977-988.

[iv] Shandra, Carrie L., 2018. Disability as Inequality: Social Disparities, Health Disparities, and Participation in Daily Activities. Social Forces97(1), 157-192.

[v] Garland-Thomson, Rosemarie, 2016. Becoming disabled: Roughly one in five Americans lives with a disability. So where is our pride movement? New York Times. Available at: https://www.nytimes.com/2016/08/21/opinion/sunday/becoming-disabled.html

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