Britain’s Missing Mediocre Model

I thought I would watch this show as it has been extensively advertised at some of my online haunts. It was interesting to an extent, but I cant help but think the appeal is primarily voyeuristic. Even as a wheelchair user I was most interested in who had what disability and how it was acquired. That and what my facebook friend Disability Bitch actually looks like.

For a start, not many of the girls are that pretty. Apparently there were only 350 applicants to choose from, and it shows. My favourite is a wheelie called Sophie, who is certainly pretty but not beautiful in a conventional sense. I’d be very surprised to see someone with her looks in a mainstream magazine.

But also, is just feels like the programme hasn’t been thought through. For example, two girls are deaf, and whilst they are justifiably disabled (although at least two girls in the programme, one deaf, one amputee dolnot consider themselves disabled – err, why did you apply then?!) it isn’t visible. The judges, let alone the audience had definite issues over this – for example, what is the point of finding a disabled model if no-one can actually *see* that she is disabled. Also, the winner is expected to be a “role model” and a spokesperson. Err, who for? At the moment, I can’t see any of these girls as a spokesperson for me.

And the final thing that irks me is the way several girls simperingly told of how they wanted to win to show that amputees / deaf / wheelchair using girls can be sexy, attractive and fun. Whilst it’s a laudable aim there is one thing I don’t understand – why do you need to be on tv to do that?

Or perhaps I’m just cross because I was too old to enter

A Clash of Cultures?

So I was back at a follow-up meeting to the Disability, Science and Art project I mentioned previously, and for which I am now a steering committee member. My feelings remain mixed, but I am nevertheless interested in how the whole thing develops. You can read more about the project here.

My feelings so far are that we seem to be seeing more of a clash of cultures in the sense of science vs art – as yet I am not sure that I have seen any evidence of (to use the term the project is adopting) a scientific model of disability. There has been quite a lot of debate about how scientists may or may not work with artists, and how scientists may view the project. My own view is that it will be treated as just another piece of engagement – i.e. we will get those scientists who believe in public engagement, who supported Designs for Life. But will this actually add anything new?

I am concerned that the emphasis will be on highlighting how scientists view disability, and this is emphasized by the idea of the scientific model of disability. I guess my biggest concern is that there already seems to be in the group a consensus that such a thing exists, and I am not at all sure this is the case. The only previous work of this kind I have seen (and only came across when researching this project) is Ju Gosling’s Abnormal, which presents itself as a scientific model, but is actually specifically from the point of view of medical research scientists. I certainly hope this project captures a broader perspective.

As I said before, I feel my involvement in the project is as a “scientist” (not entirely accurate) first and disabled person second. As such, I am one of only two scientists on the committee (the other being an established artist with a PhD), and therefore feel somewhat compelled to speak on behalf of the scientific community. And what I have seen so far reflects stereotypes of scientists as much as is does stereotypes of disabled people. Perhaps in contrast to other members of the committee, my hope is that whatever is produced changes the way disabled people and the public at large view science and those who practice it just as much as trying to find a way in which to represent how the diverse group of individual who practice science may view disability.

On the train

I’m used to getting the train. Especially on this route, I used to travel it once a week when I was doing a Masters at Imperial. Getting off is pretty easy, there is a practiced bump and slide motion down the steps, neatly harnessing the force of gravity, that I am now very good at. Nevertheless, there was the inevitable interrogation from the guard, although unusually this time it was carried out across the crowded train, as I had had the temerity to sit in a seat some distance from where wheelie was parked up.

“Where are you going?”

“Didcot Parkway.” I’d left the car there, to drive back to Oxford.

“Do they know you are coming?”

Do who know? My boyfriend? The police? Perhaps the Didcot Parkway wheelchair reception committee?

“No, I don’t need any help.”

“Well I’ll let them know.”

“OK”, resignedly.

“Now, make sure you stay where you are and don’t go anywhere near the door until I get there with the ramp.”

Grr. “I can actually get off on my own.”

My sister, who I was on the phone to, could here the whole conversation and was giggling to herself.

“Well, ok. But I’ll let them know.”

I still don’t know who “they” are.

It is hard to deal with these conversations sometimes. Part of me feels that he is acting from the best intentions, and I should therefore not be annoyed. On the other hand I’m tired – it’s now gone 10pm and I started work at 8 this morning, and I’m not in the mood to be patronised. It’s the obvious disbelief that gets me, that I cannot be trusted to get off the train on my own, even if I say I can. But then, as my sister points out, perhaps the guard is hearing impaired, so he might be disabled too. In which case, I hope he makes sure he stays where he is and doesn’t go anywhere near the door until I get there…

Mummy, how do people in wheelchairs sleep?

A question asked by a very small girl as we were negotiating our way through the crowds at the O2. Mum was a bit confused, until she explained to the little girl that we could get out of our wheelchairs to get into bed…

Sunday Times advocating disability hate crime

Totally shocking article by “journalist” Rod Liddle in the Sunday Times.

I have emailed the editor, and will be writing to the Press Complaints Commission. Email content below…

“Sir,

As a regular Times reader I am writing to express my distress and extreme disappointment in the content of Rod Liddles column, dated 6th January 2008. Under the heading “A tip for those with doubtful disability ” he states:

“Next time you see a young person in a wheelchair, tip it over and drag the occupant down to the nearest job centre, lecturing him or her all the while on the dignity of labour.”

This statement is offensive in the extreme. Leaving aside the isssues about the many young disabled people who are employed, this is advocating disability hate crime. At present incitement to disability hate crime is not illegal, though it was proposed in this year’s Queens speech.Actual disability hate crime is a crime, alongside race hate crime, and is just such a serious offence. It should be obvious to both the journalist who wrote this and the editorial team that allowed the article to be published that this is as unacceptable as advocating race hate crime. You can imagine the reaction that this comment would receive were the term “young person in a wheelchair” replaced with “black person”, and it would be on a national scale. Unfortunately the disabled community is still behind in terms of the protection afforded to other minority groups, but as the Queen’s speech showed, this situation is changing.

I suggest that you acquaint yourself with the Disability hate crime information from the Crown Prosecution service, available here:

http://www.cps.gov.uk/publications/prosecution/disability.html

On a personal note, I would like to emphasise the effect on someone in a wheelchair should anyone choose to take Liddle’s advice. It would be a terrifying humiliating experience, leaving a vulnerable person unable to use their own basic rights – that of freedom of movement. The fear of this happening is only going to increase after reading an article such as this.

I will be making a formal complaint to the Press Complaints Commission regarding this article. I am extremely disappointed, not just with the journalist but with the editorial team of the Times for allowing such a hateful, and outdated statement to be published. I will not be buying this newspaper again.

Diagnosis

I’m currently doing a creative writing course, and I thought this piece might be of interest, about when I was diagnosed in 1996:

---

“Try to relax”, said a voice in my ear as my head enters the white plastic tunnel. There is a faint whirring sound, and a strong smell of disinfectant. I stop moving. Three seconds of silence, then the machine begins to clunk and hum, and the whole tunnel vibrates.

I try to relax. Then, without warning, my knee shoots up and connects painfully with the roof. “Try and remain still”, says the voice, calmly. I try and remain still. I succeed for a short time, then all my muscles spasm together. The clunking and humming is replaced by the whirring, and I come back out of the tunnel.

“This will only work if you stay still”, says the doctor, in his best patient voice.

“If I could stay still, you wouldn’t be putting me in there”.

There is some discussion among the assembled medical staff. One emerges with a small white pill and a glass of water.

“Is that temazepam? Because I’ve had it before, and it doesn’t help.”

“Lets just give it a try, shall we?”

Whirr. Clunk, hum. Whirr.

“The temazepam doesn’t seem to be working.” Silence.

“We’ll try something else. Hold still, and don’t look at your hand.” There is a sharp pain in my hand. Whirr. Clunk.

I’m in a cocoon. There is a soft, musical humming, and a soothing vibrating motion. I sing along.

“We can hear you”, says the voice in my ear, and I smile.

Some time passes. I am quite disappointed when the whirr signals that I have to leave.

The doctors show me some colourful pictures on a screen. They try and tell me what they mean, but I don’t really care.

Dystonia and that bloke from Casualty

Interesting article in the Mirror on dystonia, and what struck me was how sensible and accurate it was, compared to the ugly scare stories I have seen in the Mirror on the same subject. I think the folks at the UK Dystonia Society may have something to do with that.

Also a quote about the specialise he went to see:

“I went to see a specialist, a neurologist, who was about 7ft tall, very expensively dressed and was very upper class.”

Sounds oddly like my old mate, Prof Quinn. Anyway, from this article:

“Dystonia is a neurological disorder which causes involuntary muscle contractions leading to abnormal movements or postures. It is not fatal and can be managed through drugs or sometimes surgery.

Short and sweet.

Disability, science and art, and more

Last week saw me taking part in a scoping study for a Disability Science and Art project. It was an interesting experience, partly because of my ambiguity to the concept of Disability Art – I am not at all sure that we benefit from isolating disability art from mainstream art. But that aside, it was interesting to hear the views of those there (and read others expressed on the blog) on their attitudes to science. I hadn’t really appreciated that I am much more affiliated to the science community than to the disabled community, largely because I was already some way down the line of becoming a scientist when I became disabled (assuming mobility is the key factor here – more on that later!).

From those at the meeting it seems that their views on science are heavily influenced by the medical profession, and here the experiences were largely negative. As I explained, my experience was quite different. There were parallels in some of the earlier meetings I had, before I secured a referral to David Burns at the RVI in Newcastle and then on to Prof Quinn at the Institute of Neurology and Neurosurgery. By the time I met Prof Quinn I was aware I had a relatively new disorder with no know cure, and that from here on in, treatment was going to be largely experimental. My six monthly visits to the Institute were a learning process for both myself and the specialists, and sometimes for groups of medical students. My interest and background in science made me a good test subject, and I felt that I was rewarded for my time with open and honest conversations with world-leading experts.

It’s only on reflection that I realise what a frightening experience it could have been. In the trials I did undertake, I felt in control and able to say no to treatments I felt to be extreme and/or unnecessary, and also in a position to make those evaluations – for example the option of selective peripheral denervation. The net result is that I have always felt in control of my condition, or at least as much as anyone could be.

I was also reflecting on how my science background influenced my own acceptance of illness. I think some of the harder factors to come to terms with were those that contradicted my experience of science – an illness that was seemingly irrational, unpredictable, with no apparent cause. As mentioned above, it didn’t start with mobility problems but with my speech when I was about 7. Subsequently writing became difficult, there was a short period when I had a slight limp, which I now know was caused by dystonic spasms, and finally (the symptom that led to diagnosis) the torticollis that set in when I was 21. For me that was the worst symptom, and there was a period where I truly thought I was going mad, unable to straighten my head but otherwise nothing else was wrong.

So I will be very interested to see how it goes, what I learn about myself but also whether it will help other disabled people in understanding more about their own conditions by understanding the scientific process. I would love to be able to use my experience and this project to develop better relationships between disabled people and their specialists, by informing both sides about the perceptions, misconceptions and stereotypes. Watch this space…

In the Shadow of the Moon

Went to see this film recently with the boy. I was a bit apprehensive – it sounded like a rehash of For All Mankind, no narrator, original footage, interviews with astronauts etc. There was some cross-over inevitably, there’s only a limited amount of footage to go around after all, but it managed to be original and inspiring. It captures the pioneering spirit of the space age*, the intelligence and humour of the astronauts, and an event which brought the world together, looking out at night to an alien world, and, for the first time, knowing that someone was looking back. My only disappointment was that Al Worden and Fred Haise, the only Apollo astronauts I’ve had the pleasure to meet properly, weren’t interviewed

I do wonder why the Apollo programme captivates my attention as much as it does. The boy is interested as an engineer – you can see him thinking about how he would have approached something, or analysing why decisions were made – and because he’s been to NASA and wants to go back. I don’t have that excuse, but something about these men, their deprecating humour (OK, not Gene Cernan, but most of them!) and their descriptions of what they saw and felt is deeply moving. I will never get to be an astronaut, and the military aspects of the programme are totally against my beliefs, but it reminds me perhaps of what mankind can achieve. The age of exploration lives on.

Also very amused by some of the astronauts responses to the way they have been portrayed in the media. In For All Mankind the audio seems to date from not long after they flew, whereas in Shadow of the Moon we see old men after a life-time of being Space Men in the public eye. Mike Collins in particular (Command module pilot on Apollo 11) has been described as the loneliest man in history as he orbited the dark side of the moon, points out that he was 1) too busy to be lonely and 2) glad to get a break from the “yapping” of the CapCom at NASA.

But the key message of the movie to me is that these men are getting on, their numbers are already diminishing, and in another decade perhaps all will be gone. And what do we have to replace them? We talk about robotic missions, space stations, replacements for the shuttle, but what do we have to inspire the world as Apollo did? Maybe the Americans will come good on their planned missions to Mars, but do we have the spirit, the energy to support them?

*or at least, it agreed with my concept of it, having been born 3 years too late for Apollo!

So, why don’t you enter the Paralympics then?

I can’t be alone in being asked this question. I’m quite young (ahem!), relatively fit, and totally independent. And I did, in fact, play wheelchair tennis for a while. But, no, I am not considering the Paralympics in any way, shape or sport. Why? Well, I’m not sporty for a start. And I don’t like other people much, so team games are out. And sports wheelchairs are bloody expensive (although my last company splashed out on a tennis chair for me, for reasons I never quite understood).

But mainly for the same reasons that I never became an athlete before I got my wheels. It takes dedication. It takes years of training. It takes regular practice, hours a week, every week, just like it does for Olympic athletes. I think when I’m asked this question it’s intended as a compliment – I look quite athletic, whizzing about in the wheelchair, I have the good upper body strength that is the natural result for anyone with a manual chair and a busy life. But it’s also an insult to the Paralympians, that anyone in a wheelchair with an ounce of strength can become one. Perhaps the odds of my getting into the Paralympics are slightly better than for your average biped trying to enter the Olympics, but only in a statistical sense.  I don’t have the dedication quite frankly, I can’t fit it in around my full time job and I like to spend my spare time drinking and socialising. They are proper athletes and that, plain and simple, counts me out.