What is disability?

I was talking today with a friend about our shared reluctance to access disability services as people living with mental illness. There is both internalised and anticipated stigma attached to the label ‘disabled,’ and it takes considerable identity work to process how identifying as disabled may change both how we see ourselves and how others will as well. This is part of a broader category of disability work which includes participating in various assessments in order to access reasonable adjustments and supports; managing those supports and coordinating your care; representing people with your condition when it becomes salient; and managing stigma and enacting disclosure, among other forms of labour required when you identify as chronically ill or disabled.

So I completely understand someone thinking ‘oh, fuck, I can’t face all that right now.’ That was me for a long time. In case it helps other people on the same journey, I want to say a bit about what disability means. 

Quick overview: I’ll briefly cover the basics – medical versus social models of disability – before I bring in notions of assets/deficits and needs. It may come as a surprise to some advocates that I favour a needs-based definition, but I’ll explain what this means and distinguish this from a deficit model. I introduce the notion of vulnerability as a key concern, while acknowledging the language is not ideal. Keep in mind these are all different ways of thinking (and talking) and none of them captures the full variety of needs, identities and experiences that exist among people with disability (PWD). As well, I’m writing in a relatively abstract and introductory mode, and there’s a risk this may disguise the way my perspective is partial, situated and in many ways privileged.

The medical model of disability is the one most of us have in our heads when we first come to disability — our own or that of someone close to us. Quite bluntly, this suggests there is something wrong with the person. To establish that, medicine establishes an idea of the ‘normal’ body and specifies standards that a ‘normal’ body can meet. If you can’t meet those standards, there are two possible responses: one is to train you to meet them (‘discipline’) and the other is to deem you abnormal (‘deviance’). If that sounds moralising, it really is; the ‘good’ disabled person never misses their physiotherapy, complies cheerfully with psychometric testing, etc. 

For example, for many years, children with autism were put through rigorous training in the conventions of non-autistic social interaction (‘ABA’). There was outrage when autistic people demanded respect for the value of autistic ways of thinking and being in the world from people they cheekily deemed ‘neurotypical.’ Adherents of the medical model saw this as celebrating abnormality, which is the hallmark of deviance. So the medical model of disability appears objective but it has little patience for human diversity and shades instantly into moralising.

The social model of disability has respect for diversity at its core. It acknowledges we are all born different in a society built around the idea that only some bodies are normal. The social model holds that disability only arises when society disables us. For example, a person who cannot walk is only disabled if they can’t access a wheelchair or mobility aids, and again if buildings don’t offer wheelchair access. These are just two examples of many ways in which society disables people who can get around just fine without walking. 

The social model of disability lies at the heart of the 2006 UN Convention on the Rights of Persons with Disability (CRPD) as well as Australia’s Disability Discrimination Act 1992 (Cth). The Act provides PWD with the right to request reasonable adjustments that would enable our participation in public life. It places the onus on the PWD to request the adjustment — hello, disability work. It also provides a lot of leeway for an educator or employer (for example) to refuse the request, for example because it’s too much work. And the onus then lies on the PWD to pursue resolution via the Australian Human Rights Commission. This puts legal dispute resolution at the heart of a social change model and, to be quite frank, it doesn’t fucking work. 

There are also social programs that offer supports that enable PWD to participate in public life, such as the Commonwealth Disability Employment Services program, or indeed the National Disability Insurance Scheme. The challenge here is that PWD are seen as needing charitably-minded public assistance to achieve the same ‘level of function’ as non-disabled people. This way of thinking is endemic in disability service provision and it is just as disempowering as the medical model. The scholar of community work John McKnight called this a deficit model — seeing people as lacking, rather than seeing their capabilities (an ‘asset’ model).

So here’s a conundrum: the social model of disability acknowledges that society needs to change in many ways to avoid disabling people; but when we provide services, adjustments and supports, we slip easily into ways of thinking that focus on what’s missing rather than how people are already capable. And it’s going to sound odd, but I think a more nuanced conception of needs can help, here. Need sounds awful – it sounds, well, needy. But the UK National Institute for Clinical Excellence (NICE) defines need as the capacity to benefit. You don’t have to be deficient, undisciplined or deviant to benefit from services, adjustments, supports and social change. We just have to take seriously the social democratic impulse to make life better than it was for previous generations, and to see participation in public life as essential for human dignity – an impulse and a vision we routinely deny in a neoliberal era.

So here’s my definition of disability:

Disability means you can benefit from adjustments, supports and social change that enable participation in public life and the attainment of personal goals.

But Daniel, doesn’t that mean we’re all disabled!?? Well, yeah. Haven’t you been paying attention? Go read Kate Manne on the invisible ‘shock collar’ worn by women and femme people, or Kimberlé Crenshaw on the interlocking systems of oppression that apply to disable the participation of Black women in public life. We are all disabled by society in different ways. People we currently understand as disabled may benefit from more specific and concrete kinds of supports and adjustments. But if we stop at that, we neglect the kind of social and cultural change that need to happen to overcome the discrimination that prevents us from public participation and achieving personal goals. 

For me, the value of this definition is the very queer kind of coalitionality it suggests we can find, with people who face other, or further, systemic forms of oppression. If we scratch the surface of anti-Black racism, we find a dense writhing mass of privileged beliefs about bodies and capabilities. Similarly, so much misogyny consists of constructing perfectly ordinary bodily experiences of people who menstruate, experience PCOS and endometriosis and dyspareunia and infertility and menopause, as deviant, undisciplined, deficient, and, yes, disabled. If we only attend to the capacity to benefit from specific and concrete supports and adjustments, we miss out on these connections with social justice.

A research hero of mine is the U de Montréal Professor Kate Frohlich, who developed (with Prof Louise Potvin) the ‘vulnerable populations framework’ (VPF, Frohlich & Potvin 2003). (Yes, okay, I’m going there.) I’ve just finished a few weeks of pro bono consulting on an engagement strategy for Covid-19 in an Australian state, and the whole writing group united hating the term ‘vulnerable,’ which triggers notions of deficiency and affective-relational needs for pity and charitable care.

But the VPF calls for public health to use social science to identify and address the processes that put some people at greater risk of risks. If need is the capacity to benefit, vulnerability is the capacity to be harmed. Meeting needs does not cancel out vulnerability; if anything, people with disability are most vulnerable to harm by their so-called carers and other close relationships, such as partners, family members, employers and research supervisors. As we develop schemes to promote public participation it is not optional to focus on reducing vulnerability as well. 

Drawing this all together, disability does not mean you are deficient, deviant or undisciplined. It means you can benefit from a service that would enable your participation in public life and the attainment of personal goals. It doesn’t turn you into a completely different kind of person: if anything, it means you have common purpose with many, many others fighting for social justice. And if you’re reading this and you don’t need much support or social change to participate in public life, I would ask you to join our fight for social change and to reduce vulnerability for PWD.

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