by Khairani Barokka

As commendable as it was for The Guardian to devote its recent editorial to the disparity between the Paralympics’ attention and funding, and the systemic dismissal of disabled peoples lives – through budget cuts to services and atrocious hate crimes – there are certain curious assumptions that still underlie the use of some of the language in the piece, and particular issues I’d like to add to the conversation, as the article has linguistic tics and gaps in the messaging that deserve some critique.

It is absolutely right that those of us who, like myself, identify as disabled should have as much respect and support as any human being, and I thank The Guardian for highlighting this, for noting how unhelpful it is to be of the view that a different attitude is all we need to get by, as well as underscoring the incongruity of celebrating the Paralympics when – for example – disability benefit entitlement tests are held at venues that aren’t disability accessible.

However, there is a keen sense that the editorial was not written by a disabled person, or at the very least not proof-checked by one, through language that requires more subtlety, and requires more emphasis on viewpoints I hope will be replicated in further media pieces on the Paralympics and/or disability issues. We are, after all, the largest minority in the world; it helps to be on our side in all ways, not least linguistically and theoretically, to understand how diverse we are, both lexical and in terms of philosophy.

Whether you call it ableism or disablism, being ableist or disablist, these words were conspicuously absent from the aforementioned editorial, and they are words I think should be far more prevalent in society’s understanding of them. Key here is that the piece seems to use the old-fashioned and – unfortunately, considering the positive intentions of the article – denigrating use of the “medical model” of disability to paint all disabled people with the same brushstroke, focusing on the fact that most of us say “I cannot” to the great physical feats of Paralympians.

The Indonesian disability activist cohort has taught me one of my favourite phrases to explain how people should question what we think of when we think of disability: “Seperti saya, kamu berbeda. Seperti kamu, saya sama.” (“Like me, you are different. Like you, I am equal.”)

Regardless of whether we consider our impairments medical or not (whether, like myself, impairments stem from medical issues we would like ameliorated or, like the vast majority of disabled people I know, these impairments are just a form of difference that are insulting to think of as “having to be healed”) using the medical model for all disabilities harkens back to a disturbing history of eugenics, in which disabled people have been the victims of forced sterilisation and mass murder, and in which we are all deemed obviously unhappy with our “differences”. Whether on the autistic spectrum and/or a double amputee and/or D/deaf and/or have fibromyalgia, it’s assumed we would all unanimously vote to be “normal”.

It’s useful to know what the social model of disability proclaims, which, in a nutshell, is that the word “disabled” is the opposite of “enabled” rather than “unable” – that the focus is on how society has privileged certain kinds of bodies and minds deemed “able”, and has long denied us access to physical infrastructure, education, health, finance, arts, and other opportunities to live a good life.

Though in academia, various models of disability are discussed and contested, and I personally think each disabled person should have the freedom to label or not label themselves how they choose, one thing is clear: the medical model for all is deeply flawed, particularly when you consider the millions of people whose disabilities do not involve health issues.

Consider D/deaf people who don’t identify as disabled, regardless of the word’s semantics, for whom the issue isn’t “I can’t hear well”, but “Why can’t you sign?” Another example is sight-impaired or blind people for whom the issue isn’t “I can’t see well”, but “Why can’t you read and respect the need for Braille, accessible websites, or audio description?” There are disability cultures and languages that deserve nourishment and acknowledgement, but have been bled of resources and societal respect.

For years, as taking stairs is generally followed by debilitating muscle pain, I said to myself and others, out loud, “I can’t take stairs.” Lately, I’ve been identifying as “a stairs-free person”. The difference is that I now speak of stairs the way some people might speak of walking on hot coals; great if you can hack it, but not for me. My body’s just different, and there’s no reason for me to hurt it, or to see being unable to hack it without hurting as a flaw.

When my different body is seen as the issue, it’s seeing myself as never being able to live a life as good as “abled” people. You stairmasters, you. When I see that I have just as much a right and a chance to live a good, full life, I start to question why places and spaces – physically; online; in the arts – are exclusionary.

The Guardian’s editorial, entitled, “Focus on ability, not disability” can be read as imploring readers, who are presumed to be “able-bodied”, (air quotes to highlight that what society deems abled and disabled are societally created norms) focus on what we can do rather than what we can’t.

If the focus is on what we can’t do, is any of the focus on why we can’t do it? Being in the arts, I count among my friends and colleagues wheelchair dancers, a brilliant sight-impaired aerialist and actor, D/deaf activists and writers, you name it. As co-editors of the UK’s first D/deaf and disabled poets anthology, myself and my two disabled colleagues all consider ourselves as having done (and currently doing) plenty of things. If you think we can’t do something, you have to ask, is it because the infrastructure, culture, or language is unfriendly to different bodies and/or minds, therefore shutting us out?

Is it because we have had far too many run-ins with establishments that medicalise differences, and give us disabled – particularly if we’re also women and/or brown – a lesser quality of service in many areas of life, causing suffering and lesser economic opportunities?

Speaking of being brown, women, and/or LGBTQI, we also need a lot of attention to how intersectional frameworks show multiple forms of discrimination acting simultaneously. We need a full understanding of differences as important and “disabled” as an identity many take on to highlight how society does not enable us the way it does other bodies and minds.

With that in mind, may I suggest a different title: “Focus on ableism, not ideas of ability.”

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Khairani Barokka is a writer, poet, artist, and PhD researcher in the Visual Cultures department at Goldsmiths. In 2014, she was named one of UNFPA’s Indonesian “Inspirational Young Leaders Driving Social Change” for practice and research in the arts, and her poetry-art-Braille bookIndigenous Species is out with Tilted Axis Press in November 2016. More at www.khairanibarokka.com Twitter @mailbykite

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2 thoughts on “Understanding Disability: Like me, you are different. Like you, I am equal

  1. Hi, author here. Though I don’t think the social model is the be-all and end-all–particularly as we need local and intersectional models with a similar understanding of societal forces of discrimination–it remains in my opinion a valuable framework to keep in mind. I strongly dispute the thinking that calling out “victim mentality” assists the cause of people who continue to fight for our rights, against very real, very urgent, and truly dire circumstances globally (remember, the readership here is not only in Britain, though other articles on this platform and others should remind you there is still much to be done here as well). Thank you for reading. KB

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  2. Interesting response to the article which definitely had some slightly off-key vocabulary, but I feel the social model exacerbates a victim complex for people with disabilities.

    While I fully appreciate how it came about and the role of UPIAS and later the Washington Group in the widescale proliferation of the social model in extending, or agitating for the extension of rights for PwDs, the context in which it came about needs to be fully appreciated.

    It’s inherently revolutionary and while that was all well and good in 1976 & post-Industrial Revolution Britain. It’s not so relevant now, in the society that Britain has now. The realities for PwDs today has progressed from what it was then and the social model has not progressed in line with this new reality. In fact, I’d wager that it has stagnated.

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