Last week there were some important matters raised again on social media which merit comment. I write this blog with a little trepidation, because I think I may be about to disagree with people whose analysis I hold in high esteem: still – one of my arguments here concerns challenge, and my argument will be that challenge is healthy, so here goes. The question has been posed by @rich_w as to whether disabled activists are right to challenge Scope (1) or whether we should actually be all working together to achieve agreed aims (2). Elsewhere, but equally importantly, the thorny question has been raised again as to whether the divide we have long fought for between illness and disability (sic) is a false divide after all. (3)
Lets start with the illness / disability paradox, or to phrase it more accurately, illness / impairment and disability, as Jenny Morris explained. (4) Now I can see there may be a validity in grouping illness and impairment together, generally, and think that ‘states of being’, used by @neilmcrowther is a useful phrase to accommodate the characteristics that both have in common – they may cause pain, fatigue, be fluctuating, long or short term, require treatment and medication, and so on. And I can see that people who are ill experience barriers, often similar to those who have impairments, and stigma. And if we focus in on employment – which recent debates seem to have done – well then, having been an employer I can see that employers are reluctant to give a job to people who are ill, leading maybe to discrimination.
So, there are lots of things in common between ill / sick people and people with impairments. But to group these people together without recognising what separates them is, I believe, unhelpful. And what separates them? Clearly, the most obvious difference is that disabled people are not necessarily sick, or even if they are the discrimination they experience may have nothing to do with their illness. Also, another thorny matter is around mental (ill)health, intellectual impairment, Aspergers and so on. How are we to group these in order to define barriers and design policy responses?
The danger, however, lies in this individualisation of experiences, for it is this that early activists reasoned was a major source of our exclusion from society. The much criticised, but as yet unimproved social model of disability gave us the rationale for identifying disability as a particular form of social oppression, and a recognition that the barriers and the discrimination that disabled people face have a collective nature, they do not reside with the individual. However valuable the UPIAS work was that led to the social model, it’s clear that our collective understanding of impairment, let alone illness, has changed and developed and we have not yet refined the social model to take account of this. Must the social model also cover illness? Or must we coin a new phrase for the social oppression that ill people face? Or are we to tackle the individual oppressions that ill people face, and if so how? And – for me – the biggest question of all, where are we to have these debates so that we can make them open and welcoming? Maybe an ongoing refinement of the Disabled People’s Manifesto will provide the vehicle for such debate? Maybe Disability Rights UK would facilitate such a debate? Where do we think our leaders are?
Which brings me to my second concern, one that is much easier to address – is it right to challenge Scope? Of course, the simple answer to a very necessary question is ‘yes’.
Scope is a large national charity that impacts on the lives of many, many disabled people – either directly through provision of services and institutions, or indirectly through their policy work. They’ve been very canny in having a disabled woman as their Chair, and in adopting the language of the disabled people’s movement, and in appearing to be progressive. Why, just this last week their chief executive explained in the New Statesman how they are reviewing some of their care homes, having already closed some. These are homes for which they were criticised over thirty years ago by activists. So it’s not a new challenge, but it’s a fair one. And they should answer it, because I don’t believe they ever have.