19 April 2009

Word of the Day

Disdar - The ability to recognise fellow disabled people, even if their impairment is not obvious (like gaydar, but for disableds).

18 April 2009

Susan Boyle

She became instantly famous last Saturday because of her audition for Britain's Got Talent. As soon as the program aired I started reading mentions of her online, but it wasn't until Tuesday that I actually watched the YouTube vid to see what all the fuss was about.

As soon as she started talking I thought "she seems to be slightly learning disabled." I suspect that the majority of the audience, not being as disability aware as me, thought that she was just stupid:

Stupid for appearing on national television in an unflattering dress.

Stupid for appearing on national television without running a bit of Frizz Ease through her fuzzy hair.

Stupid for appearing on national television with unplucked eyebrows. Surely everyone's heard of tweezers and noticed that everyone on telly has skinny eyebrows? She must be stupid to have not noticed that.

Stupid to think that she's sexy enough to flirt with the judges.

Tanya Gold wrote in The Guardian about how Susan was a victim of 'uglyism' until she burst into song. I think she was a victim of a different ism - disablism.

It wouldn't matter if Susan's IQ was less than 70 (the typical criteria for a "learning disabled" label) or over 170... she appeared to be learning disabled, and the audience both those present and watching at home, judged her on that appearance and started discriminating accordingly.

In Yesterday's Hate Mail she "came out" as learning disabled (I don't read it, I promise. Someone pointed the link out on a disability messageboard):

She had suffered mild brain damage after being starved of oxygen at birth.

Recalling her childhood, she said earlier this week: 'I was born with a disability and that made me a target for bullies.'

Rather entertainingly that article also says "Her rather wild hairdo and bushy eyebrows have led her to be dubbed the 'hairy angel' in some quarters." - It was their paper that gave her that name!

There's a global assumption that disabled people can't have any talent for anything; and so the audience having given her the label of stupid assumed that there was no possible way she could actually be a good singer. Surely if she's too stupid to know how one should appear on TV she must be so stupid that she thinks she's got a talent even though she can't have?

And so they laughed.

Then she sang. The laughter stopped.

Suddenly everything turned round, instead of laughing at her, the audience applauded along with her.

But this applause was of course also the result of a disablist belief system. The world has such low expectations of us that when we turn out to be capable of doing something that warrants far more praise than if a non-disabled person had the same skill.

I thought Susan's performance was great, I think it's great that a disabled person has shot to fame for being talented. I think it's great that a disabled person is now admired by the disablists that were bullying her only 2 weeks ago.

I have to wonder though, would she be the global phenomenon she is if her learning impairment hadn't been so apparent during the pre-audition interview?

13 April 2009


So... the internet, especially Twitter, is all a buzz with the news that Amazon has removed the sales rank from all lesbian/gay/bisexual/transgender titles. What this means is that gay books are now excluded from showing up in bestseller lists, and turn up down the bottom of search lists (if at all).

But what hardly anyone is talking about (yet) is that books to do with disability and sexuality have had their rank stripped too.

Books like Tom Shakespeare et al's sociology text book "The Sexual Politics of Disability". "The Ultimate Guide to Sex and Disability" has also been de-ranked.

The story is starting to crop up in news articles all over the world, and most articles are citing Twitter. There have also been petitions set up protesting against Amazon's effective censorship of LGBT titles. But none of these mention that us crips are getting censored too.

If you tweet, do mention something about Amazon de-ranking books on disability and sexuality also. And make sure you use the hashtag "#amazonfail"

ETA: This of course isn't the only recent disability-related Amazon fail: http://is.gd/qC8W

ETA2: This blog post explains the importance of literature on disability and sexuality. There's also another blog post on the issue here.

ETA3: Disabled people seem to be taking a double whammy in this whole thing. First our books get de-ranked. And then the mainstream press fails to acknowledge us when writing about this. It doesn't matter if it's a glitch, a new policy, or a hack - the press should be representing us.

ETA4: Amazon have apologised and said "that the de-ranking was not limited to gay and lesbian titles.... In fact, it impacted 57,310 books in a number of broad categories such as health, mind and body, reproductive and sexual medicine." Hmmm. "Health and mind and body" - their way of saying "disability" and trying to reassure LGBT customers that it wasn't just us (I say "us" wearing my lesbian hat. And I do actually have a hat that apparently makes me look very dykey). What the press still aren't picking up on was that, yes, it wasn't just LGBT titles, it was disability titles too. I even Emailed The Guardian and asked them to even give a sentence to the fact that it affected disability titles too. They haven't.

09 April 2009

Extra Crippy

You know it's gonna be a strange day when you've been patronised by 9:15 a.m. I'm not usually even awake by 9:15 a.m.

I hurt my foot four months ago. I can't pinpoint exactly when because I was painkillered up to the gills because of the post-op pain in my face. All I noticed was that it started hurting some time during the nine days my mum was in hospital between her heart attack and her death.

The delay in receiving medical attention for it was slightly my fault. I've got osteogenesis imperfecta, so if I went to see a doctor every time something ached or hurt I'd never leave my doctor's. But after two months of pain I figured it was probably worth mentioning the next time I saw my GP.

He immediately referred me to orthopaedics, but I didn't get an appointment for another two months. In the interim period I wound up in A&E one night when I found I could no longer move my foot. All they could really say was "you need to see an orthopod," but my A&E adventure in the snow did nothing to bring the appointment date forward.

So that brought me to today. I arrived at the clinic reception and the receptionist, who had been talking at a normal speed until she clocked me, s-t-a-r-t-e-d t-a-l-k-i-n-g r-e-a-l-l-y s-l-o-w-l-y. I spent the next half an hour compulsively checking Twitter on my phone and wishing that I'd ducked into Euston on my way there to pick up a copy of Metro. A hospital waiting room without any crap out of date magazines? Outrageous! And very very boring.

The first doctor I saw did not inspire me with confidence. He pronounced it "osteogenica imperfecta." Twice. Did I mention that he's supposed to be a bone specialist?

Establishing that I'm more knowledgeable and qualified than the doctor is not good.

He then proceeded to demonstrate his ignorance further by attempting to ask me about how I predominantly get around.

"In the average day how much time do you spend mobile and how much time do you spend in your wheelchair?"

"I'm actually very mobile in my wheelchair. I can push for miles."

"I mean, how much time do you spend mobilising without your wheelchair?"

"I don't do much mobilising without my wheelchair. I spend most of my time without it either sitting on the sofa or on my desk chair."

"Okay, in the average day you spend eight hours sleep. How do you split the rest of your time between immobilised in your chair, and mobilised walking?"

This circular conversation went round for a while until I let it slip that my flat isn't wheelchair accessible. I did remind him that most of my time awake and in my flat is spent either sat on the sofa or the chair, but he didn't think that laying on the sofa moving nothing but your thumb to operate the remote control is immobile, because at least it's not in a wheelchair.

He then decided to examine my foot. This was where he demonstrated that there is potentially a proper orthopod in there somewhere - he poked my foot till I screamed. I don't know why x-rays and the words "it hurts there," are never enough for an orthopod; they have to prod until you yelp.

He went to "look at my x-rays" leaving me alone in a room for a good 10 minutes with someone else's medical notes on the side. And people are concerned that computerised notes are going to lead to confidentiality breaches (I didn't look at the notes, I'm not an arsehole).

He came back with The Boss, they'd both looked at my x-rays together. The first thing The Boss asked me to do was stand up, so he could check out my flat-footedness. He then asked the first doctor "did you check that?"


"You should have done."

Then The Boss turned to me "have you always been that flat-footed?"

Which of course I have. He then also proceeded to jab the bit that I said hurt with his thumb and gave me a diagnosis; I've ripped the tendon out of the end of a bone in my foot, and yanked a lump of bone off with it. It's actually an injury I've had before, only last time it was a finger where my hand collided with the foot of a breaststroker in the neighbouring lane in the pool.

The Boss decided that I need an Aircast boot to support my foot while walking for the next few months. He wants me to come back in two months (presumably so he can poke it again) and then for me to have orthotics in my shoes to correct my super flat-footedness.

So then The Boss left leaving me with first doctor again. He walked with me out to reception, handed me a piece of paper, and told me to take it to the orthotics department. I looked at the piece of paper and asked "are you sure this is the right paper to take orthotics?"

The paper clearly said "Patients: hand this paper into reception before you leave." It also had a "next appointment" box in which the doctor had hand written "two months". It said nothing about an Aircast boot, which I figured was kinda what orthotics needed to know.

"Yes, take that down to orthotics."

"Are you sure this is the right paper to take orthotics?"

"Yes, take this down orthotics reception and they'll sort you out."

"Are you sure this is the right paper to take to orthotics?"


"Okay then."

Then the receptionist put on her slow voice and called me over. She handed me a paper and told me to take that to orthotics.

"But he [pointing] told me to take this [handing over paper] down to orthotics."

"No, you're supposed to hand that in here."

"That's what I thought."

At which point First Doctor came over and started getting all defensive about the fact that he was wrong. During his defensiveness I pointed out to the receptionist that someone had spilt sugar all over the counter. For some reason this observation convinced her that I was intelligent enough to be spoken to at a normal speed.

Anyway, the receptionist sorted me out with right bits of paper, and pointed me in the direction of orthotics (because the doctor didn't know where it was). So I headed down into the bowels of the building. Why is it that orthotics departments are always underground? They gave me the splint I'd been prescribed and sent me back up to the clinic to get the splint "fitted" by a nurse.

The nurse was actually really nice and friendly, she showed me how to put it on properly and inflate it. I tried standing up in it and said "erm, it's supposed to support my flat-footedness, but I can still feel my foot rolling over inside it." I took it off to show her how the boot is designed for either foot, so it's got no arch support.

She immediately understood the problem and said "I'll get the doctor."

So who did she bring back? You've guessed it, First Doctor. "You need to try it for a couple of months to see if it helps."

"I don't need to try it for a couple of months, because just standing for a few seconds I can tell that it's not providing the support it needs to." Another circular conversation ensued, with him getting progressively more and more, erm, I think "assertive" is the most appropriate word. The more wound up he got, the quieter and calmer I spoke. I think most patients would have been intimidated into leaving with a piece of inadequate equipment, but that's just not me.

Eventually I finally got through to him when I said "have you ever tried on a pair of shoes in a shop and not bought them because you could tell just from standing in them for a few seconds that they were way too big?" So he went to phone orthotics to ask for advice. He was gone for ages leaving me with just Twitter on my phone for company. Eventually he came back with a sheet of sticky backed padding to make an arch support for the inside of the boot. I thought I'd achieved success until:

I tried walking in it.

Thankfully there was a desk within reach for me to grab hold of so I didn't go splat on the floor. "I'm gonna need a crutch or something."

More drama. I was sent back and forth three times between the clinic and the basement before someone finally located a midget sized crutch in the hydrotherapy pool changing room. It's unbelievable, kids break things and need to be given crutches all the time, so how can it be so hard to find some kiddie-sized crutches in a fucking hospital?

During one of my trips down to the basement in my crutch-hunt I asked the (American) orthotist if there was a toilet nearby.

"There's a handicapped bathroom just there on the right. Erm, I mean left."

1) Handicapped?

2) An orthotist that can't tell left from right is a bit worrying. You could end up with a completely incorrect body part splinted.

Anyway, the crutch thing. Of course in an ideal world I wouldn't need a crutch because my flat would be wheelchair accessible so I could use my chair indoors. But the wait for an accessible property was years anyway, and that wait is gonna be even longer now that disabled servicemen and women will take priority for accessible housing over all other disabled people.

So anyway, I finally had my boot with a rigged up arch support and a crutch to lean on. I got to go home!

As I was pushing past Euston station on my way back to the flat, I passed a group of four police officers talking to a group of three people. To carry on pushing I needed to cross the road by one of the service entrances into the station, but the police had blocked the dropped kerb with their car.

"Excuse me, is this your car?" (A bit of a stupid question, but it's what fell out of my mouth.) "Can you move it away from the dropped kerb so I can cross please?"

They didn't kill me, so it's all good.

When I got home I discovered that when I was in the hospital asking for a crutch that my flat had become much bigger in my imagination than it actually is. I got in, leant the thing against the sofa, and haven't touched it since. My flat is so small that wherever I am I can always reach either a wall or a piece of furniture to hang on to. So all that travelling back and forwards hunting for a Lisy sized crutch was for nothing.

This thing is a bitch to walk in. I can only walk really slowly anyway, but this has reduced me to about one third of my normal walking speed. Though I seem to have cracked it, the fastest, safest, and easiest way to walk in this thing is sideways like a crab.

Now excuse me while I scuttle crustacean stylee to the kitchen to make a cup of tea.

Update Friday 6 pm: I've given up on the boot. It was pressing/rubbing on my heel, and causing that to hurt more than the pain at the injury site!