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.

Being ignored

There was an article on The One Show this week, a short “citizen journalism” piece from a wheelchair user. It described how life was like being ignored by everyone because you were in a wheelchair. It showed a range of situations, in a lift with people getting in and out, being pushed about town shopping etc, obviously staged to make the point that wheelchair users are ignored.

The strange thing is, I never see this phenomenon. I cannot think of a single time when I have been ignored. There have been occasions when people have not seen me and bumped into me, especially in crowds, but I have never got the feeling that I was being deliberately ignored. Patronised yes, but never ignored.

I often find in fact the opposite problem – I feel highly visible, excessively so. Complete strangers seem happy to strike up a conversation with me (very un-British!), or make passing remarks – often the inevitable speeding/license “jokes, which I do have issues with – but again, not being ignored. When out with the boy he often comments on the number of people who smile at me in the street. I make an effort to smile back, but if I’m pushing myself I’m often concentrating too hard to notice.

This attention is one reason why I don’t like visiting new places, especially on my own, as I feel intensely conspicuous. On the rare occasions where something goes wrong (I trip if walking, or bump something with the wheelchair) I am instantly surrounded by a host of friendly smiling strangers, wanting to pick me up, help me out, check I’m ok, when all I really want to do is crawl into a hole. In fact there have been a couple of occasions where it has led to full blown panic attacks, because being surrounded by people standing up when you are in a wheelchair can be intensely claustrophobic, and for someone who isn’t hugely sociable at the best of times, it is far from a pleasant experience. It’s exacerbated by the desire not to offend these well-wishers, while desperately wanting them to go away and leave me to recover on my own.

Why is my experience so different? The lady who made the tv piece had a lot in common with me – a few years older, but otherwise smartly dressed, professional looking. middle class type who wouldn’t look out of place in M&S or Waitrose. I couldn’t see any reason for people to ignore her and not me. Perhaps it is where I live and work – very middle class, liberal area (Oxford), working in an environment where the majority are highly educated and well travelled… Or perhaps I am a more optimistic person, perhaps I put a more positive spin on the observations I make of those around me. Maybe I am just too hard to ignore?

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…

My first wheelchair

Another creative writing piece for your reading pleasure…

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I took my mum with me to the Wheelchair Services Centre. Ridiculously, it is located half way up a huge hill near Crystal Palace. A nice lady who spoke slowly and clearly sat me down with a mountain of forms.

 

“First we need to measure you up, I hope that’s ok?”

“Err, yes.”

“Right, we need your hip-width, thigh length, arm reach, inside leg measurement…”

The list went on, she measured bits of my body I didn’t know I had.

“Right, so we can assign you a Ultra-Slim.”

I was flattered, if a little confused.

“Now we need to look at the make and model, so I have a few more questions…”. There were hundreds of parameters to choose from, some made sense, some did not.

Arm rests or clothes guards? Fixed handles, adjustable handles, or none at all? Collapsible or rigid? Solid or air tyres? Titanium alloy or hollow aluminium? Did require cadence on the wheels? Removable footrests? Did I require stabilisers?

I answered as best I could, but having never had a wheelchair before, some discussion was required. Solid tyres are better for outside use as there is no risk of a puncture. Titanium alloy is lighter, but more expensive. Then we got to the choice of colour. This I knew about.

“I’d like black please.”

“But we have lots of brighter colours…”

“No thanks, black would be better.”

“But for a young woman,” this, oddly, was directed at my mum. “Black is depressing. How about purple?”

My mum looked pointedly at me. “It’s not my decision – she’s the one who’ll use it”.

“I want black. It matches all my clothes.”

“You don’t want purple?”

Ten minutes later, I was proudly rolling down Crystal Palace hill in my new, black, Ultra-Slim titanium alloy wheelchair. It did have stabilisers, that was the one concession I was prepared to make. And for the next four years, it came with me everywhere. It braved the streets of London in freezing winters, sweltered on a dive boat in the Red Sea, visited the Pyramids at Giza, cruised the Caribbean, attended weddings and job interviews, black tie balls and helped out one Christmas at a homeless shelter.

And not for one minute do I regret choosing black and not purple. My wheelchair is a truly versatile accessory and a vital part of my wardrobe.

A different tune from the Independent

Nice to see some newspapers have a more responsible regarding disability hate crime – the Independent on “We must protect disabled people against this wave of barbaric and hateful crimes“. Admittedly the article is focusing on people with learning difficulties, but it applies across the board.

More on Rod Piddle

A response from the Sunday times:

Dear Ms Fletcher

Thank you for your letter. We are sorry that Rod Liddle should have
caused offence. I have ensured that the Editor responsible has a copy of your letter and has taken your point on board.

We plan to publish a letter from Jon Sparkes, Chief Executive of Scope on Sunday.

Yours sincerely
Parin Janmohamed
Letters Editor

Well, it’s a start. A letter is also being despatched to my local MP, David Cameron and Gordon Brown. Turning into a right little activist me 🙂

Letter to the MP:

I am writing regarding the issue of incitement to hate on the grounds of disability. I was extremely distressed to see an article in the Sunday Times by columnist Rod Liddle (available online under “A tip for those with doubtful disability” here) in which 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.”
As I understand it this article was in response to a Conservative Party statement on reducing the number of those claiming Incapacity Benefit. Being a young wheelchair user who has never been unemployed or claimed incapacity benefit I fully support the Conservatives in reducing the number of fraudulent claims, to ensure that those who really need the support can be granted it.
However, I am insulted by the implication that young wheelchair users are at fault, and deserving of any form of discrimination on the grounds of their disability. What is an even greater concern is the frightening and intimidating action he proposed, which is nothing less than threatening abuse and violence to disabled people. To be dragged out of my chair would be a terrifying and humiliating, not to mention physically damaging, experience, and to read someone suggesting this course of action as a political statement, however cynically (as columnists are expected to be controversial), is very upsetting.
I am amazed that this is considered acceptable in any context and certainly not in a national newspaper. If the phrase “young person in a wheelchair” was replaced with a reference to an ethnic minority group it would not just be socially unacceptable, it would be a criminal offence as incitement to race hate crime. However, there is still no equivalent law for disabled people.
As I understand it, this was mentioned in the Queen’s speech, but no longer appears in the Criminal Justice and Immigration Bill, whereas incitement to hate on the grounds of sexual orientation is discussed, there is no mention of disability hate crime. I would like to know what the Conservative party can do to reassure me that the implementation of a process to reduce the number of Incapacity Benefit claims will not result in an increase in violence and discrimination towards disabled people.
I feel articles such as that quoted above demonstrate the need for incitement to disability hate crime to be made a legal offence. As leader of the Conservative Party I would like to know what you are able to do to support this aim, and to ensure that newspaper journalists and editors who publish statements like this are not just criticised but prosecuted.

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:

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“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.