Disability and illness: and challenging Scope.

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.

1. http://www.theguardian.com/society/2013/oct/08/disability-protest-right-independent-life
2. arbitraryc.wordpress.com/2013/10/9/are-disability-campaigners-right-to-criticise-scope/
3. http://makingrightsmakesense.wordpress.com/2013/10/09/why-disability-equality-need-not-be-the-price-of-
defending-the-welfare-state/
4. http://jennymorrisnet.blogspot.co.uk/2013/09/welfare-reform-and-social-model-of.html
5. http://www.equalityhumanrights.com/advice-and-guidance/new-equality-act-guidance/protected-characteristics-definitions/
6. http://www.newstatesman.com/politics/2013/10/care-bill-presents-once-lifetime-opportunity-disabled-rights

Advertisements

About lorrainegradwell

Active in the disabled peoples' movement since the early 80's, stepping back a bit now but still speaking up and still looking for independence and an end to discrimination.
This entry was posted in Uncategorized and tagged , , , , , , , . Bookmark the permalink.

2 Responses to Disability and illness: and challenging Scope.

  1. DavidG says:

    Properly and rigorously applied, the Social Model deals quite handily with the disability implicit in the way society deals with an impairment taking the form of chronic illness. Any attempt to separate disability and chronic illness, or impairment and chronic illness, is simply an attempt to set huge numbers of disabled people adrift in an attempt to protect those whose disabilities happen to fall closer to non-disabled society’s view of disability (i.e. nothing outside of blind, paralysed, or missing a limb). The truth is there is no clear dividing line between disability and chronic sickness and a huge number of us have a foot in both camps. Not even the wisdom of Solomon could separate my Hypermobility from my Chronic Pain Syndrome, they are two aspects of the same genetics, yet one is normally considered more an aspect of disability, one more an aspect of sickness. Discrimination against me, on the other hand, never bothers with the distinction, it just hates me for being different. If we truly value the Social Model, whose entire point is to stop discrimination on the grounds of disability, then discriminating against other disabled people by selling them down the river because we don’t think their disabilities should count is not the way to start.

    I dealt with this at greater length in my ‘Distinctly Divisive’ blog here: http://davidg-flatout.blogspot.co.uk/2013/07/distinctly-divisive.html , which was a response to Mike Oliver trying to argue for setting sick people adrift in ‘Distinctly Disabled’ here: http://disabilitynow.org.uk/article/distinctly-disabled

  2. detrich says:

    For me, it was chronic illness that led to segregated schooling, it was the experience of extreme discrimination within segregated schooling that led to an impairment being acquired. In time through mainstreaming in unsupported environments wherein targeted abuse remained the order of the day, prior to me making work choices that sat happily with the illness/impairment category where I found exclusion to continue and so on and so on until depression and anxiety became the order of the day. I discovered the disability movement and the social model in the 90’s and started to feel whole again, better for my experiences. And I guess it is this whole that feels most challenged here. Should the social model exclude me on the basis of my chronic illness but include me on the basis of my impairment should I be in or out of the movement, sustained or starved by the model.

    I’m somewhat glad that DavidG is of the view that I can be fully included on the basis of either.

    And yes, please do continue to blockade Scope.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s