 |
 |
 |
 |
 |
 |
 |
 |
 |
(Click on the underlined links for further information.)
Launched August 2002, last updated 6 October 2006.
*************
6 October 2006. Barry's obituary is published in The Guardian's Other Lives obituaries section. Click here for PDF. (You will need Adobe Acrobat Reader, downloadable free via our Campaigns page.)
It was fairly heavily edited from the version I submitted - they left out the bit about his wicked sense of humour, for example! But people who knew Barry well assure me that it presents a good reflection of his life.
*************
BARRY BAINES, 27 September 1947 to 29 June 2006.
With great sadness I record that Barry died at ten past four this morning, in the Cumberland Infirmary, Carlisle, where he had been receiving such superb care since the end of March. I was with him.
I shall maintain this website in his memory and I hope that those of you who have contacted us, especially about the accommodation campaign, will carry on challenging those who claim to speak for you and Barry but in fact fail miserably.
Barry had a good and fulfilled life. When we first met twenty years ago, he told me that he had achieved more with Friedreich's Ataxia than he would have done without it. The diagnosis had given him the kick he needed to get his life on track - and that was 35 years ago!
I'll miss him like hell.
Christine Allen.
Now read on! This website chronicles Barry's life, his achievements and the people and attitudes that made his hackles rise! (The picture below was taken in October last year.)
*************
See Stop Press - Updates page for latest postings.
*************
August 2002.
Hello! I'm Barry Baines.
I've had Friedreich's Ataxia (FA – appropriately!) for over 30 years and I've been a full-time wheelchair user for most of this time. But I've tried not to let it interfere with my life!
The condition is usually diagnosed in childhood or early adolescence, so mine was a late onset in my early twenties, although with hindsight I could identify signs in my earlier years. When I was diagnosed at the National Hospital, Queen Square, the consultant neurologist gave me just about the most positive message I have ever had - “You’ve got it; I’m afraid I can’t help you with it; (this was 1971 and not even the genetics of FA was known at that time) only you can work out how to live with it and I wish you all the luck you need.” Or words to that effect! And that’s what I have done for the last thirty years – fairly successfully by most standards!
After the diagnosis (and the “why me?” and the thoughts of suicide!) I went back to college to get my ‘A’ levels to go to university. I had left school at 16 with ‘O’ levels and done an engineering apprenticeship, but I realised that as the condition progressed I would have to work with my brain rather than my hands! And this I have done for many years, in spite of being a fairly advanced physical wreck by now. I retired from my university academic post some years ago, but I still do some freelance work, researching, writing and campaigning, in collaboration with my partner Chris (Dr Christine Allen).
We prefer to regard FA as merely a mechanical dysfunction and live with it by adapting our environment and having the appropriate equipment, with no input from either health or social services. We subscribe to the social rather than the medical model of disability. In fact we have coined our own variant – The Mechanical Model of Disability – self-explanatory – a bullshit-free version of the Social Model which cuts out the pseudo-academic crap and lets us get on with real life!
But it's not possible to avoid the politics of disability completely, and you do have to keep throwing pebbles in the pond! You cannot, however, spend all your time wearing the Disabled Person label - you have to get on with Real Life!
On the cover of the August 2002 issue of the RADAR bulletin it says : “At the Commonwealth Games, disabled athletes competed on the same stage as non-disabled ones. Now why can’t that happen throughout society?”
I’ve spent the last thirty years of my life trying to ensure that it does, but unfortunately the Disabled Community (how I loathe that term!) tends to be its own worst enemy and has been happy, if not actually complicit, in allowing itself to be ghettoised. This creates problems for those of us who do live with our disability in the big wide world: the stereotype is generally based on the lowest common denominator. The obstructions we’ve encountered have been mainly in the fields of accommodation – both overnight and housing - and in the attitudes of health and social service providers.
Our Mission Statement (to use the jargon) : -
We resist the emphasis on the medical model of disability. Providers must recognise the group who, although they are severely physically disabled, are not ill and have learned to live with their condition over many years. They must learn that - apart from changing antediluvian attitudes - adaptation of the physical environment and provision of essential equipment are all that the independent disabled person asks for. There are huge numbers of severely disabled people who function independently, professionally, economically, socially, within partnerships or families - in the Real World, in Mainstream Society. And the number is going to increase enormously in the near future, as more young disabled people are integrated into mainstream education and employment.
We have written and published widely about this and much of our output is now on this website. (See Campaigns - click on the underlined links to read the full article. The papers are also downloadable as Adobe PDF - Portable Document Format - files. To read these you will need the Acrobat reader - you can download this free from the Campaigns page.)
Chris and I are happy that you have decided to visit our new website. We will develop and update it (see Stop Press) and we hope that you will keep in touch and let us know if you have any similar experiences, so that we can continue to campaign and lobby service providers, to enable people like me (and maybe you) to live and function to the best of our ability within mainstream society.
Please e-mail us at alba@albassocs.com or telephone on 01228 810592.
And now - just to add a touch of levity -
. . . me in fancy dress as Thomas the Tank Engine, 1988 or thereabouts, and
. . . me being generally stupid! Not sure when but I still had hair so a long time ago!
