Home > Opinion > Another year older, another year wiser
Tom Shakespeare
Tom is a Research Fellow at Newcastle University. His non-fiction books include Genetics Politics: from Eugenics to Genome and The Sexual Politics of Disability.
Another year older, another year wiser
21st August 2009
August 20 marked the first anniversary of my developing paraplegia, so I entreat patient Ouch readers to bear with me while I spend a few hundred words reflecting on what I've learned, with hapologies to veterans of spinal cord injury who will no doubt scoff at these newbie insights.
I had the advantage of having been a disabled person for more than forty years, so when I gradually lost the use of my legs over a 72 hour period, it was a shock but not a world turned upside down. Classically, spinal cord injury often strikes down young men in their prime, and I cannot imagine what impact that would have on a fit independent individual. I adapted more easily to the change of being.
People with restricted growth like me, however, are often not perceived as "genuine" disabled people, and certainly having become a wheelchair user, doors have opened: DLA, blue badge, direct payments, discounts at the theatre. There's no doubting my status now.
But with these perks came endless bureaucracy. I do not know how others cope, but over the last twelve months I have often longed for a secretary or business manager to deal with applications, assessments, book keeping and endless correspondence with social services, hospitals, physiotherapy, occupational therapy, wheelchair services, mobility centre, DVLA, DWP. The folders bulge with letters, contracts, appointments, invoices, notifications andcatalogues.
People with restricted growth like me, however, are often not perceived as "genuine" disabled people, and certainly having become a wheelchair user, doors have opened: DLA, blue badge, direct payments, discounts at the theatre. There's no doubting my status now.
But with these perks came endless bureaucracy. I do not know how others cope, but over the last twelve months I have often longed for a secretary or business manager to deal with applications, assessments, book keeping and endless correspondence with social services, hospitals, physiotherapy, occupational therapy, wheelchair services, mobility centre, DVLA, DWP. The folders bulge with letters, contracts, appointments, invoices, notifications andcatalogues.
My first three months as a paraplegic were spent in hospitals, the endless tedium and depression of which has thankfully been largely forgotten. I do remember discovering that nurses and care assistants are as marvellous as all the clich茅s suggest, and that hospital food is unimaginably bad. I also had to go through the trauma of bowel and bladder management, and facing up to just how limited I was in terms of movement. The result was weeks of pain, frustration and sometimes misery, mitigated only by the warmth and loyalty of .
A year on, it's all second nature. The astounding pessimism of the hospital consultants was proved wrong, and most bodily functions operate smoothly. I have adapted to my limitations. Moreover, I have managed to regain some strength and control in my legs. Not walking yet, no, that was a rather ambitious goal, but I transfer from bed to chair to car and back again with comparative ease. Last week, I stood up for the first time.
I wish I'd known more about wheelchairs at the outset. With short arms, I need a differently proportioned chair, but only recently have I managed to identify the lightweight rigid frame model which will give me most independence: I can't wait to be able to stow it into the car myself, and get back to driving again.
A year on, it's all second nature. The astounding pessimism of the hospital consultants was proved wrong, and most bodily functions operate smoothly. I have adapted to my limitations. Moreover, I have managed to regain some strength and control in my legs. Not walking yet, no, that was a rather ambitious goal, but I transfer from bed to chair to car and back again with comparative ease. Last week, I stood up for the first time.
I wish I'd known more about wheelchairs at the outset. With short arms, I need a differently proportioned chair, but only recently have I managed to identify the lightweight rigid frame model which will give me most independence: I can't wait to be able to stow it into the car myself, and get back to driving again.
Much of the time, I love being in a wheelchair. I was never the world's best walker: my legs would go numb, and I would need to rest, or else fall over. Standing or strolling around were a real trial. Now, I sit in the comfort of my chair, and make idle conversation, or slowly trail round an art gallery or bookshop, taking my time. Even if I ever got back to walking, I'd never give up my wheels.
That's all assuming I would be able to avoid hills. That's mainly where my support needs come in. I have roped in a succession of friends, children of friends and under-employed artists and dancers to push me around the cities of Europe. So far, and contrary to the advice of seasoned personal assistance users, I've always preferred to employ people I know and can make conversation with, and who might share my interests.
Every disabled person is their own individual, a fact that the disability rights movement has difficulty embracing. We make our own choices and react in our own ways. People have asked me whether my experience of becoming paralysed has changed my views on disability: no, I don't think it has ... except that it highlighted the whole world of rehabilitation, of which I was previously largely ignorant.
I still think that impairment is difficult and unwelcome: I would gladly be cured of my paraplegia tomorrow, even though I've never been bothered about having restricted growth.
That's all assuming I would be able to avoid hills. That's mainly where my support needs come in. I have roped in a succession of friends, children of friends and under-employed artists and dancers to push me around the cities of Europe. So far, and contrary to the advice of seasoned personal assistance users, I've always preferred to employ people I know and can make conversation with, and who might share my interests.
Every disabled person is their own individual, a fact that the disability rights movement has difficulty embracing. We make our own choices and react in our own ways. People have asked me whether my experience of becoming paralysed has changed my views on disability: no, I don't think it has ... except that it highlighted the whole world of rehabilitation, of which I was previously largely ignorant.
I still think that impairment is difficult and unwelcome: I would gladly be cured of my paraplegia tomorrow, even though I've never been bothered about having restricted growth.
Even more than before, I think that healthcare professionals do a fantastic job, and while they might sometimes need to rethink some of their attitudes, I've really benefitted from their skills.
And I've been amazed and gratified by how helpful total strangers are, almost every day. I'm not too proud to accept offers of assistance, and positive reactions have so far thankfully outweighed harassment or discrimination.
I know I am privileged: I am educated, employed, well connected and a good communicator. I realise that for most people in the world, to be disabled is to be impoverished and excluded. I feel lucky to live in Britain, with a good range of services, an increasingly accessible environment and an improving public transport system. Like everyone, I have criticisms to make. In particular, I fear that might make my life, and that of many thousands of other disabled people much more difficult. Dismantling a system which has empowered so many, even while endorsing the Convention on the Rights of Persons with Disabilities, seems a cruel blow. All Ouch readers should read the different views on the matter:
and then participate in the Big Care Debate. Come back in a year's time, and I'll tell you how cheerful I am then.
鈥 The Big Care Debate: Email careandsupport@dh.gsi.gov.uk with your views on the future of care.
And I've been amazed and gratified by how helpful total strangers are, almost every day. I'm not too proud to accept offers of assistance, and positive reactions have so far thankfully outweighed harassment or discrimination.
I know I am privileged: I am educated, employed, well connected and a good communicator. I realise that for most people in the world, to be disabled is to be impoverished and excluded. I feel lucky to live in Britain, with a good range of services, an increasingly accessible environment and an improving public transport system. Like everyone, I have criticisms to make. In particular, I fear that might make my life, and that of many thousands of other disabled people much more difficult. Dismantling a system which has empowered so many, even while endorsing the Convention on the Rights of Persons with Disabilities, seems a cruel blow. All Ouch readers should read the different views on the matter:
and then participate in the Big Care Debate. Come back in a year's time, and I'll tell you how cheerful I am then.
鈥 The Big Care Debate: Email careandsupport@dh.gsi.gov.uk with your views on the future of care.
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Comments
And please don't forget our own debates and discussions here on the Ouch Message Boards Tom.
Personally I find the lack of any direct information about the latest debates and discussions on the main Ouch Site on either current and/or long standing issues, and so not making use of our collective experience, ideas and suggestions as part of Ooch's editorial content, to be ebsolutely deplorable.
B.B.C. News may not listen/read the Ouch boards, but surely to God Ouch Towers and people like yourself should be yes?
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Here are just a few examples for you to peruse at your leisure Tom, and/or those residing up in Ouch Towers.
鈥淐RIP鈥 [Campaign for Rights and Inclusive Practices]
鈥淪ave Our DLA' campaign - Ideas & Actions鈥
鈥淒avid Cameron's "Compassion" for Disabled People.鈥
[A discussion of the Times article and our responses to it.]
鈥淥pen Letter to the DWP鈥
Please feel free to come and join in on any or all of these debates Tom, your input would be most welcome.
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Ah, at last, an article by Tom that I can relate to.
Well, not so much relate to as;
1) Not try and hunt him down and squeeze him til he sees some sense
2) Be pleased that he is big enough to aknowledge that there are other hassles involved with being disabled, i.e. the nightmare that is DLA, DWP, forms, appointments etc.
Now as a disabled person with a couple of disabling conditions (they always come in gangs) Tom has eventually made a step closer to what an awful lot of disabled people experience.
Hurrah, cos the disabled community needs more spokespersons.
Sorry that I have to be cheered by your misfortune Tom, I know it seems callous of me, and pretty damned selfish too, but... welcome to the club, now get out there and kick some butt!
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What exactly does Tom know about the Disability Rights Movement? It's only when issues affect HIM he decides to get on board.
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Correction to the link about the David Cameron's "Compassion" for Disabled People.鈥 [A discussion of the Times article and our responses to it.] In my comment no. 2 above.
The link should read as follows:
NB
My apology too for the lack of spacing in my comment 2. Sadly the "preview" option is not showing the correct format that will actually post right now.
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Oh and also not to forget our own original discussions about the B&W campaign, "Campaign to Save Our DLA", which can be found here:
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I wrote this a while back:
pete
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There is a great much in this article I could comment on, but I havern't the time or space to do so. People are individuals with their own experiences and views; others may not interpret the making sense of these experiences in the same way, but that doesn't automatically mean either view is invalid.
I've known Tom for twenty two years and I've seen him change both physically and in terms of his ideas; most people do change - I have. Knowledge however doesn't always provide wisdom. Within this article are statements which are utterly foolish - I say this not simply because I disagree with them, I say it due to the fact they let him down as a person and an academic. Not for the first time, Shakespeare has made comments which do not stand up to examination.
Shakespeare wrote: "Every disabled person is their own individual, a fact that the disability rights movement has difficulty embracing." Does he expand on this or clarify it; no he doesn't. I am not going to say this is "a lie" because to do so would give the statement too much credibility. I'd rather call it a nonsense. Why?
Firstly, what is this "disability rights movement" he speaks of? Is it simply another name for the Disabled People's Movement or something else? Lack of clarify, bad form for an academic. Secondly, as an individual who 'claims' to have been, and is regarded to be, part of this movement for over thirty years I have seen countless definitions of what this "movement" is and who belongs to it. At one end of the spectrum it has been described like a Stalinist political party or the Borg - one aim and one 'ideology' set in unquestionable concrete - at the other in sociological terms it is described as 'a social movement', groups and individuals who want to bring about social change. Is the "social model of disability" common to both ends?
Sadly, there is not enough trees in the New Forest to absorb the volume of misinformation written about this model by disabled and non-disabled people alike - some, no names, have made a living out of it. Much of what has been written has been refuted, again and again, but the same distortions continue to flow. As an activist do I adhere to THE social model? I think Mike Oliver and Vic Finkelstein would say I didn't; I'd agree with them, as I do with much of what they write as individuals and as a contribution to a growing 'ideology'. There are differences however, and there are different versions of the social model too; why, because humans are social animals, individuals who generally speaking, can develop complex views. Ah, but do all these individuals, groups or models embrace "individual experiences" of living with a significant impairment? The most honest answer is: who knows? From my perspective I would say it would depend on the context of consideration. If two people in a pub were discussing a Shakespean tragedy - the other kind - it doesn't follow that they have no time for Arthur Miller. I totally reject the claim that all social model approaches ignore impairments or individual experience and activists within the "movement" do too. How these things are viewed differ internally and externally. Remember Shakespeare doesn't accept any "models" - he only accepts his own latest take on disability.
If an individual wants a "cure", that's up to them. If an individual says disabled people a crazy if they don't want or do want a cure, is another story. As an activist it is the dominant views on impairments that I object to, not medical intervention. Personally, I'd like to see a cure for pathological liars.
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Welcome, Tom. Advocacy, obviously, is born of experience as well as observation. The best of us have experienced trial after trial, and our response is our legacy. Your legacy is shaping up rather well, and your advocacy is a live, growing part of you, as you have the humility to understand and the grace to explain.
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I'm sorry (although I don't know why I'm apologizing...): but I have a real problem with some of the comments on this article....
Firstly, I don't think it's meant to be an expression of Tom's academic side... -- he's just celebrating (if that's the right word) a year of change (some positive; some negative...) -- and, even if it were academic, I've always found him honest and modest enough to admit where he's made (what he sees as) mistakes or changed his views (unlike so many other of us fallible human beings...). [I also know that a lot of the views he expresses -- for instance, in his 'Disability Rights and Wrongs' book -- are unpopular with many in "this 'disability rights movement' he speaks of" (which he defines extremely well in the aforementioned book).]
Secondly, I just do not understand where all this vitriol comes from (...especially when, it seems, many weeks, Tom's posts go uncommented: perhaps because they don't offer such a sitting (sorry) target as this one does?) -- unless this is just an excuse, of course...? It's not very easy to respond to criticisms in a book, or an academic paper; but a 大象传媒 forum...?
Perhaps 'my' disability is of the wrong sort, too*; and my views are therefore "wrong"... -- but (i) I have always found myself (mostly) in empathy with what he writes (academically and personally -- and in combination); and (ii) I have seen plenty of evidence to believe that his advocacy is not a new thing (which seems implied, at least once, above).
No doubt Tom's perspective has changed, along with his condition... -- doesn't it for all of us...? -- but I think the 'solidity' of his core beliefs (from where I stand) has never wavered.... It is those beliefs (I believe) -- along with hard graft, of course -- that have earned him his position in academia, etc.; and, therefore, his column, here.
Some of us may not like that -- for whatever reason... -- but I really do not think we need to get personal over it....
*[I'm sure this will make me as popular as Tom: but I offer it only as an insight from years of observation and silence....] There often appears to be a hierarchy of disabilities that can come into play when making judgments on others' opinions: whether it is based on length of time, severity, type, or even non-existence.... [A lot of early "activists" were, as I remember, non-disabled -- and this seems to have made them the most judgmental and most voluble (if that's the right word...) of all.]
Why this should be, I leave for others to decide or discover. I just wonder, sometimes, why this drives some of the comments that are made...?
[My non-disabled partner has just asked why we all seem to argue so much "when you would think that [we] would all want the same thing" (meaning 'disability rights' and their definition...). Maybe we do; maybe we don't, though? Perhaps it's not what we want, but what we're motivated by...?]
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