I’m increasingly encountering reference to the Social Model of Disability, in autism rhetoric. It is most strongly associated with the Neurodiversity movement, and related groups (like ASAN). Without fail, every time I have seen the Social Model of Disability being used to discuss autism, I have seen quick and concerned responses from others who are outraged that something as serious and real (as opposed to mild or entirely socially constructed) as autism, could be referenced and re-framed in this way.
In this post I am going to try to make sense of those concerns, where they come from, and whether they are well-placed. First some introductory points about the Model itself.
The Social Model of Disability can be seen as a response to the more individualised and “normative” Medical Model of Disability. The Social Model shifts the focus from reshaping the impaired individual, to reshaping society (in terms of things like society’s response, attitudes and accommodation of those impaired persons). It defines disability in reference to how much society is accommodating the affected individuals, rather than as something defined by the condition the person has.
It does not necessarily come hand-in-hand with a complete reframing of the impairment carried by the individual, by which I mean, you can still identify an objective and serious impairment held by the individual, yet use a Social Model approach to what to do about it and how to talk about it. It may do though; various movements will and do deny existing definitions – and even existence – of the impairments that lead to disability, completely denying current terms and groupings and diagnostic criteria used to identify the conditions affecting people in the first place. This line of thinking will also challenge uses of the terms like “impairment” at all, choosing instead to completely redefine the condition as one only created by societal attitudes towards these people as “other” and unwanted.
Similarly, the Social Model of Disability doesn’t necessarily come hand-in-hand with saying the only correct response to a challenged person is to alter society and everyone else rather than the individual themself (for example, they may say society must be more accommodating but also there must be medical and therapy interventions for the best of the affected individual). Again though, some do take that more extreme approach, saying that the affected individual should not have to change or be forced to change at all; that it is only society (everyone else) who must be expected to change, in attitudes and accommodation towards those seemingly affected by a disability.
Basically, the Social Model of Disability then can be seen either as a guiding consideration that enhances our appreciation of the role society plays in the definition and actuality of disability, or it can be taken as a more extreme version that attacks the very definition of impairments (per se) and completely counters existing expectations that afflicted individuals do something to better fit into the world they exist in.
In that first guise – as an enhanced consideration of the role society plays in making disability worse – there will not be much controversy, since it would be fair to say that most people understand that accommodation and better attitudes towards conditions like autism, can and do make a very real impact on how debilitating something like autism can be. But in this softer guise of the model, it doesn’t tell us much we didn’t already know, and isn’t really a “game-changer.” It is the more extreme version and uses of the model that raise hackles (and I will soon get to why that may be, particularly for autism). I think it is important though to recognise that not everyone who refers to the Social Model of Disability is conforming to this more extreme version, and are often using it to rather suggest a gentle paradigm shift along-side continuing medical definitions and interventions at the individual level.
In order to understand why many in the autism community – most especially the daily carers of those with more severe forms of autism – take such exception to the more extreme Social Model of Disability, I think it is important to understand the rather common histories and daily struggles faced by these carers; pre-diagnosis, at the point of diagnosis and post-diagnosis.
It is a common experience for parents of autistic children to go through months or years of being told there is nothing “wrong with their child”; that what they’re worried about in their child is just a little slow development in their interests, abilities and speech. That better parenting or more socializing would fix the child right up. Eventually the child receives the diagnosis (which may take more than one professional, particularly if they see the wrong sort of professionals), and then those parents have to face family, friends and strangers sharing their wisdom that autism is not a real condition; it’s just a fad diagnosis tailored to bad parents or poorly performing children. After diagnosis comes the eternal fight for services and funding that you’re supposedly entitled to, so your child can get the help they need as soon as possible, to make the biggest difference possible for the brightest future possible.
So when someone comes along after or during all these struggles and adds one more voice to the “your child’s condition isn’t really a disability” barrage, it is completely understandable and predictable that there is going to be a backlash. When you fight to have your child’s condition acknowledged in the first place by professionals and those around you, then fight to access services, to then have someone tell you “it would all be OK if society just acted a bit differently towards your child” or “there is nothing wrong with your child, just something wrong with society”, it comes off like a threat to the very diagnosis and to the hard-won services. And in its more extreme form, that is exactly what the Social Model of Disability is; a threat. It tells you to get rid of the diagnosis category (in particular forms and places anyway), and to stop providing therapies to these people; to turn all funding and attention instead to the problems in society instead.
More than a threat though, it also comes across as (a) a complete and astounding denial of reality, and (b), an entirely unrealistic and arguably immoral response to impairment and disability.
It comes across as a denial of reality because being around the most severely autistic (and disabled more generally) makes it impossible to say “there is nothing really wrong here.” When basic self-care skills are missing to the extent that the person is dependent on others to change nappies well into their school years, or language is non-existent to the point that completely artificial modes of communication need to be intentionally (and often expensively) introduced in order to even figure out the simplest request, the notion that just changing society would make it all be fine, can appear ignorant and be quite upsetting. This would be a reaction to a more extreme form of the Social Model of Disability of course; not the form that accepts real and serious impairment (beyond the socially defined) and the need for interventions at the individual level.
It can be seen as an unrealistic and immoral response too. Unrealistic, because making everyone else in society change when the alternative is working to help that individual find a way to function within society as it currently exists, is the far more mammoth task, and unlikely to help that individual here and now (though it may improve their life years or decades from now; there is arguably no reason social awareness can’t be improved along-side an individual approach). The focus needs to be on helping the person now, in the world they find themselves in. Yes, lets work to make that a better world, but not at the expense of helping the person find their way in society as it currently works.
The “immoral” aspect of this approach comes in because the Social Model of Disability does not sit intuitively with highly valuing independence, which is a question of not just economics but a deeper set of (particular) moral beliefs. The moral concern here is that dependence on others – particularly on society at large (in terms of financial support, accommodation, positive discrimination etc) – is neither neutral nor something to be encouraged and celebrated. Rather, anything which encourages adults towards personal independence (self-care, financial independence, the ability to live one’s own life the way one chooses, etc), is a positive value.
However, it must be noted that the “outcome” (which is arguably unrealistic or impossible) of the ultimate implementation and realisation of the Social Model of Disability, would actually be heightened independence of those currently deemed disabled, since they would be more empowered to gain employment, and to move freely through society (both mentally and physically). Also, one could arguably question the meaning of independence in a society that taxes heavily already, where interdependence and dependence is already an oft-forgotten aspect of today’s modern societies; that the Social Disability Model just seeks to extend that aspect.
Again though, the increased independence arguably afforded by a Social Disability Model approach, can come along-side rather than instead of, an individualised approach to disability (where therapies and other interventions are also used to equip the affected individual). It is the “instead of” approach – where some argue that therapies, definitions, and interventions at the individual level should be abandoned altogether – that upsets carers the most.
From my own thoughts and understanding of these conflicts, a lot of confusion comes from inconsistent or unclear uses of the Social Model of Disability. At its extremes, the Model looks distorting, offensive, and dangerous to the wellbeing of the disabled. In its milder form it is a sort of paradigm shift – bringing attention to a different or rather additional way to view, understand and approach disability – and yet because it is milder, this form isn’t as important or “powerful” as its more extreme version (and is arguably redundant as a model per se, since it is downgraded to a “consideration” or “heightened awareness”, that can sit (merely) along-side the existing supposed “Medical Model”).
I do not have particular training or special insights (beyond Sociology being the Minor of my BA and my own experiences as a mother of an autistic child), that I brought into this post. This post is rather the result of thinking about others’ reactions, and indeed my own reactions, to encountering the Social Model of Disability rhetoric, particularly in regards to the autism community. And so, as ever, I do openly encourage you to correct me if I’ve got something wrong or misrepresented or misunderstood some aspect. But if I am incorrect, it is worth noting that those errors are made not just by me, and are symptoms of an oft poorly communicated rhetoric rather than ill-intent or lack of consideration on my behalf.
Related and recommended reading:
- The Social Model of Disability: An Outdated Ideology? (pdf, Shakespeare and Watson)
- ASAN’s Discriminatory Agenda (Autism Jabberwocky)
- Showcase: Autistic Hoya’s “Disability is a Social Construct” (Autism Blogs Directory)
- Wikipedia entries for Social Model of Disability, and Medical Model of Disability