Recent weeks have found me, when not editing outstanding projects, tentatively approaching research for my next novel, The Wisdom of Closed Worlds—making the first preliminary dents in the numerous websites covering the particular topics I need to address and spending a small fortune on Amazon for reference works.
The subject at the heart of The Wisdom of Closed Worlds—as the title of this blog post might suggest—is disability, or, more to the point, the history of disability in the UK with an emphasis on the 1940s and 1950s.
Now, as many of you will know (although quite a few may not, since I only mention it when it has relevance), I’ve been disabled since birth with a condition known as type II spinal muscular atrophy. A “severe” disability, I, although considerably limited physically by my condition, am most emphatically one of the more fortunate ones. Nonetheless, I have lived with disability all my life. I have no doubt that it has contributed to my worldview, my personality, my career choice, even. But it has never seemed all that significant. Not to me.
Recently this has become all the more striking. The disparity between how I view myself and how the world (or the nation, to keep it on a more workable scale) views people with disabilities has, frankly, reached a point that is now almost laughable—were it not in many regards extremely alarming. Repeatedly, I see headlines talking about what “disabled people” do and do not want, how they all seem to be responding en masse, with one voice, to, for example, proposed changes to the benefit system, and I find myself wondering just who these “disabled people” actually are. Because, whilst I am concerned that we should always have a fair and effective benefit system, I only rarely agree with the headlines I see out there. These proposed changes, however, are not what I want to address here. Let me simply put myself on the record as saying, for now, that I believe an overhaul of the benefit system has been long overdue. In such circumstances, it is vital that this is done responsibly, with the most vulnerable protected. It is equally vital, however, that we do not allow ourselves to fall into the trap of believing that everyone who claims to be disabled is disabled, or that, for that matter, all disabled people have a default setting of non-criminality. Whether the current government is getting the balance right, to be frank, is difficult to say, yet. Seeing beyond the scaremongering headlines and assessing the general effectiveness of policies that, in some cases, haven’t even been passed, yet, just isn’t possible. So this is something I will probably return to at later date, when the indignant press and bandwagon-jumping, opportunity-seizing charities have quietened down a little.
What I do want to address here, however, are the dangers of times such as these, and the way in which very well meaning people can so often contribute to very real misconceptions regarding disability.
Whilst reading this piece by Jayne Clapton and Jennifer Fitzgerald on The History of Disability: A History of “Otherness”, I was especially struck by the changing attitudinal “models” of disability throughout the ages—moving from the religious, through the medical and into the (current?) “rights-based” model. And I was, of course, especially affected by the way in which this impacts upon general and individual “identity”
These are things I have considered numerous times, of course. My novel Children of the Resolution touches upon some of these themes (it goes back, I suppose, in many ways to the sociological notion that it is societal reaction to disability that is the disabling factor rather than the disability itself). I had never, however, seen it so precisely analysed and explained.
The paragraph below struck a particular chord with me:
Yet, rights-based discourse, although employed as a political strategy, has also become a way of constructing disability by locking people with disability into an identity which is based upon membership of a minority group. Entitlements thus become contingent upon being able to define oneself as a person with disability. And the conceptual barrier between ‘normal’ and ‘abnormal’ goes unchallenged, so that while one may have entitlements legislatively guaranteed, ‘community’ which cannot be legislated for, remains elusive.
The very idea that I am somehow a member of a minority group is, frankly, something I find quite absurd. Like everyone out there who does not have a disability (although I would argue that we all have a disability, if we define the term broadly enough) I eat, drink, live, breathe, vote, have opinions, voice them, sometimes keep them to myself, watch crap TV, read good books, listen to music, fart, laugh, cry, love, hate and so on. In short, I exist in the same intellectual, physical and emotional world that we all, on the whole, share. Read my novels, and you will be struck by the inherently human nature of my characters—whether they be noticeably disabled or not. I do not live on the fringes of life. My disability and, more to the point, reactions and attitudes to it, do not in any shape or form truly define my identity. Any problems I may have in life do not (and its remarkable just how many people in social work of one kind or another still assume this) automatically mean that I have enough “in common” with someone who has similar problems for me to rub along nicely with them (although, obviously, this can occasionally be the case). I do not exist in some Wyndham-esque world where I am psychically and emotionally connected to EVERYONE with a disability out there, sharing their views and concurring on every point as the media and numerous charities would like you to believe (and, for that matter, neither do other people with disabilities). Disability is not some generic, unifying, victim-centric political theory—it’s a noun, an understandably useful umbrella term, and something that, frankly, we should all use much more carefully.
The final paragraphs of the above-mentioned article, whilst a little too “new-agey” for me to be entirely comfortable with them, address the future, and touch upon ideas that fit quite nicely with my thoughts above:
Some writers argue that we need to go beyond conceptions of constructed disability to a notion of universalism whereby, according to Canadian writer, Bickenbach, disability is actually a fluid and continuous condition which has no boundaries but which is, in fact, the essence of the human condition. And, as a condition which is experienced by us all, at some stage in our lives, disability is actually normal. This view is also supported by the Indian philosopher, Sarkar, who argues that bodily differences should not be allowed to mask our essential humanity.
At the level of our physical existence, diversity is a natural condition and the need is for us to welcome and embrace diversity outside of a hierarchical classification of difference. Yet, at another level, difference is simply a construction of ideology, not a state of reality – since we are all interconnected and have flowing through each of us the same life force. According to Sarkar, “the force that guides the stars you too”. Yet, the history of disability has been a history of seeking to construct hierarchical difference out of an essential reality of oneness. The challenge is to create the reverse.
And, so, in conclusion, what can we do to address this? The first step, I think, is to, where possible, try to think in the terms set out by Bickenbach. “Disability” is a sliding scale. We all fit on it somewhere—either towards the milder end of the spectrum, or the more severe. The scale is not fixed. It alters through life. Some people become more disabled as they grow older, some, disabled in childhood, actually improve into adulthood, before old-age kicks in and does its stuff. It’s one of life’s many variables. It does not define who we are (though, naturally, it can and often does contribute to one’s outlook, personality, opportunities etc) and it most certainly does not unite us all with one political mind and will.
So use the word with care. I don’t mean be politically correct and tiptoe around the poor little cripples—I mean think a little about those headlines, about how you share the too-numerous myths regarding disability. When you discuss the topic, discuss it as you should any other: rationally and with consideration, and always with the awareness that, yes, we all fit on that scale somewhere. Never assume that the phrase “oh, disabled people have it so hard” will automatically engender a smile of agreement from someone with a disability and, in short, remember what is, for me, the one most important fact: the “general victim” model of “disability” is despicable whoever perpetuates it. (Just for the sake of clarification, this is very different to situations where people have become victims of hate crimes etc due to reactions to their disabilities. I know some people out there will no doubt try to read this into my use of the term “general victim” model, but please don’t. You’ll be quite wrong.)
I have vacillated somewhat on whether or not to open comments on this post and have decided not to—not because I do not value your opinions, but, rather, because I simply do not have the time to enter into protracted debate on this. I have, however, activated the Rate This function at the top of this post. Please feel free to vote.
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© 2011 Gary William Murning