12 December 2007

Mice genetically altered to not fear cats.


Mice aren't scared of the smell of cats anyway! If they were, they wouldn't keep sneaking into my flat and winding up suffering from death by cat's teeth.

Unless some of these specially bred mice escaped and managed to make their way all the way from Japan to the Somers Town area of London...

10 November 2007

Dear Anonymous commenter who keeps leaving me dissertation length comments telling me my "disability is a punishment from the gods."

Fuck off.

Yours so not faithfully;

Lisy Babe.

13 October 2007

I think I need some help. I'm wondering if there's an "anonymous" group for my particular problem.

I'm addicted to... CSI.

And I really do have a problem. Despite having all the DVD's so far, I still feel the need to stay up late every night to catch the odd episode on Five US.

Fortunately I'm a student at the moment, so I can afford to stay up late watching TV and then sleep all day. But it'd be nice to see some daylight once in a while.

And you'll be interested to know that the main cause of my obsession with the show isn't Jorja Fox and those wonderful eyes of hers. Though of course she does add an extra level of enticement to the show.

The main draw for me is that it's probably the best representation of disability to have ever been shown on TV.

On several TV shows we've seen disabled doctors... Kerry Weaver in ER and of course House. Why is Doc Robbins in CSI so different?

He's played by a disabled actor, Robert David Hall.

When I was an undergraduate I remember watching a documentary in which a black woman was reminiscing about when she first got a TV. She said something to the effect of "whenever there was a black person on TV my friends and family would call each other to tell them to switch on the TV quick!"

Sadly, disabled performers are so rarely spotted on the small screen that disabled people still do this today. Even the BBC hosts a messageboard called "Quick! I've seen a disabled person on TV!"

The other fab thing about Doc Robbins is that his impairment is such a non-issue. Usually when we see disabled people on TV they're either a villain (think Roger Lloyd Pack's character creating the Cybermen in Doctor Who) or they're burdensome or overly brave for just living their lives (just look at all those "freak shows" they show on five). Certainly their presence is usually all about their impairment - it certainly seemed to me that the only purpose for the character of Brenda in The Office was to make statements about her being a wheelchair user. The same with the baby with Downs on Eastenders, all the storylines were about the Downs, never about the baby as just a baby.

Doc Robbins on the other hand just gets on with the job, and the other characters see him as a medical examiner, not just as a disabled person. In fact, I can only think of his impairment getting mentioned a couple of times - in one episode he began an anecdote with "before I lost my legs..." and in another he got something stuck in the sole of his shoe. Instead of removing his shoe to deal with the offending object, he took off his whole leg.

CSI with the character of Robbins makes disability "normal". Which of course, it is. With roughly 18% of the population in both the US and the UK having some kind of impairment, disability is normal. Though every other show on TV would never have you believe that. I've been waiting and wishing a TV show would show disability in such a way. In fact, I can quite honestly say that CSI is the show I've been waiting for my whole life.

It's important to show disabled people as normal on TV. This summer while volunteering on a FOCUS project one of the young people said to me "before I met you, I was scared of disabled people. I thought they were 'different.' Now I've got to know you I realise you're just like anybody else." I can do what I can to help both disabled and non-disabled people see that disability is "normal", but I just don't have the power to reach as many people as a popular show like CSI.

We're in the 21st Century, yet being a wheelchair user makes me so "freaky" that I can actually cause accidents. People get so engrossed in watching how the-lady-in-the-wheelchair crosses the road that they forget to look right and left before stepping off the pavement themselves. We need more disabled people on TV for non-disabled peoples safety.

Sadly, even CSI doesn't get it right all the time. The episode Sounds of Silence features the murder of a Deaf boy. One thing the show did very, very well was to highlight how even the most apparently open-minded of people, who'd never make a racist or homophobic remark, often have disablist prejudices. Sara and Warrick, two "good guys," make gross assumptions about the needs of Deaf people. The ever adorable Grissom of course puts them right.

What bothered me about this episode was the fact that it painted segregated educational institutions as a solution, not a problem. The victim was beaten up because he hadn't heard 2 guys shouting at him. The episode implies that if he'd stayed in the safety of a segregated environment, and not ventured "out there" he wouldn't have been killed. What the writers failed to acknowledge was that if Deaf and disabled people were allowed and encouraged into education alongside their peers, non-disabled people would have a greater understanding of disability. If the killers had had a Deaf kid in their class at school they might have thought "hey, maybe this guy's deaf?" Rather than jumping straight to "this guy's an arse for ignoring us."

The episode A Little Murder is largely great (I say that through slightly gritted teeth just because so much disability-related language that's acceptable in American English is offensive to me as a British English speaker). Almost all of the guest stars in this episode are of restricted growth, not to mention the whole hotel full of extras. And once again the show brilliantly highlights the sad reality of the fact so many people have disablist prejudices. In this episode the investigator that has his disablist ideas corrected is Nick.

Even before the opening credits have rolled, the writers got a dodgy comment in. And surprisingly they gave that line to the usually wonderful Grissom...

"Being a dwarf doesn't mean you're disabled Nick, it means you're... short."

I bet everyone with dwarfism claiming Disability Living Allowance is hoping that a decision maker from the DLA office doesn't see that episode.

The episode goes on to acknowledge some of the many disabling barriers dwarves face (one example given is handrails on stairs not being appropriate heights), and Grissom seems perfectly aware of these barriers. So why on earth would he think that dwarves aren't disabled? Does he really belive those barriers have no effect on a persons ability to participate in everyday life? (I am of course using the Social Model definition of "disabled".)

Robert David Hall and the cast of A Little Murder aren't the only disabled actors to have appeared in the show. There was an episode (Snuff) in which the team investigated the murder of a stable hand with Downs Syndrome, and the victim was played by an actor with Downs. This positivity towards hiring disabled actors makes the episode XX seem so sad - the fact that they cast the non-disabled T R Knight (of Grey's Anatomy fame) to play a learning disabled man.

Another episode which featured a non-disabled actor "spazzing up" is One Hit Wonder, in which Elizabeth Mitchell (Juliet in Lost) plays a wheelchair using attorney. You could in this case argue for the casting of a non-disabled actress, the character had an acquired impairment and was non-disabled in the flashback scenes. But there have been instances on other TV shows of a blind actor faking sight in a few scenes before the character went blind, and of actors with no arms wearing prosthetics for a few scenes until the character's arms were lost. And lets not forget Cherylee Houston playing a non-disabled woman in one sketch on Little Britain.

The issue with this episode in my mind was what I call "The Glen Hoddle Mentality" - that disability is a punishment for sinning. The character became disabled when she shot her husband. Before he bled to death, he grabbed the gun and shot her back. But, not all disabled people are angels, and these things do happen. And I think the fact that CSI has such a positive history in terms of it's realistic representation of disability that it earned the right to "get away with" this episode.

And this is just the tip of the iceberg, we've seen an episode with an autistic witness (Caged) and the murder of a girl with bipolar disorder (Recipe for Murder). In the episode Living Legend there's even an acknowledgement that disabled people can be victims of Hate Crimes.

While CSI might not make it to the almost one-in-five ratio of disabled people that would truly reflect real life, it does better than any show I've ever seen to have come before it. OK, Twin Peaks might have just about gotten the numbers in (Eileen Hayward, Johnny Horne, Nadine, Leo, Gordon Cole, The Man From Another Place, The One-Armed Man, The Log Lady, Andrew Packard, and I'm sure Andy had some degree of intellectual impairment) but it was hardly groundbreakingly positive in its approach to depicting disability like CSI. I mean, the show Twin Peaks itself isn't even accessible to all - several episodes contain strobe lighting which can trigger seizures in those with photosensitive epilepsy.

The good thing is, since CSI we've had the spin off CSI:NY - another disabled doctor! This time played by the wheelchair using actor J. Grant Albrecht

I sincerely hope that future programme makers consider the success of CSI and the fact that disabled people make up such a significant proportion of the population. If we're all phoning our friends and telling them to tune in, like that black woman, we can make a real difference to audience numbers. I wonder how many other CSI fans are so engrossed because of it's representation of disability, like me?

27 September 2007

I've just finished reading Stephen Fry's essay on fame. I certainly found it a thought provoking read.

I often think there are a lot of similarities between being famous and being disabled.

Firstly, people will always remember meeting you. I can remember the exact date I first met Sharleen Spiteri. I remember sitting next to Matt Lucas on the tube and him pointing out that my jacket pocket was undone. I remember crossing a road in Regents Park in the opposite direction to Derren Brown. I remember that New Year's Eve spent at the same event as Hannah Martin from Neighbours. And I bet there are millions of people in this world that I had a brief chance encounter with who will also remember me for years, if not their whole lifetime. People whom I've met once often approach me and talk about the last time we met. "I'm sorry, my face recognition is appalling," is really all I can say back.

Secondly, people always either talk to you or avoid you because of who you are. I've been in bars where there has also been someone off the telly and hearing my friends go "I'm going to talk to X." Or alternatively "I can't talk to X... they're famous!" People react the same way to me. I either get people wanting to know "What happened to you then?" Or of course, people avoid me like I've got the plague because "I can't talk to her! She's in a wheelchair!" That last response is particularly pesky when they're serving at the bar and all you want to do is order a pint.

Thirdly, people think they have a licence to just come up and talk to me in the street/supermarket/other public place.

Stephen says:

There are days when try as I might I cannot go unnoticed. It’s as if I’m walking around with a neon sign over my head. Every cab driver, everyone I pass in the street, every shop assistant stops me and asks for an autograph or photo (of which more later). I can lower my head, concentrate on looking anonymous, but it’s no good.

OK. I don't get asked for autographs. Instead I get asked "Were you in an accident?"

Stephen summarises that paragraph by saying:

‘Weird, I’m really famous today,’ is how one might put it.

And I know exactly how he feels. Some days I seem (in the eyes of other people) to be more disabled than on other days.

Famous people are not allowed to be in a bad mood in the way that everyone else is.

Neither are disabled people. You may remember in this post I worried about giving "The Disabled" a bad name. Very often I just want to tell people to "fuck off," but know that I mustn't.

If I were to ask one thing of people in their interaction with the famous it is this: consider the companions. Imagine what it is like to be in the company of a well-known person, a person who could be your brother, sister, mother, life-partner, school-friend, client, patient. You’re chatting away and someone barges in on your conversation. They completely ignore you, indeed often literally elbow you out of the way, planting their back in your face.

Something else I can empathise with. It's amazing how many of my non-disabled friends get more bothered by the way "Ordinaries" talk to me and treat me than I do.


Robbie Williams can walk around Los Angeles without being recognised

Interestingly, I too can wander round LA without being harassed in the same way I am in the UK. Quite simply because LA is so brilliantly accessible, wheelchair users can get everywhere - so we are everywhere. In contrast, London with it's steps everywhere, it's almost totally inaccessible public transport system, etc disabled people are rarely seen or heard. Who'd of thunk me and Robbie would have something in common?

I'd like to be famous actually. As Stephen says, in many professions, fame is a measure of success. It would be nice to have people recognise me in the street because of something I'd accomplished, rather than just approaching me because I look different.

Trouble is, if I was "famous" - would I notice the difference?

25 September 2007

Today I was on my way home from a meeting, and I was starving. So, even though my bank balance hates me for it, I stopped off in a restaurant to grab some dinner.

"You look like you could be this person who used to come in here 2 to 3 years ago, 2 to 3 years.... older," said the waiter who cleared away my empty plate.

When he paused before "older" I was expecting him to say something like "fatter" as you could tell he was clearly searching for the most polite word.

Earlier on in this conversation he'd mentioned that this person was a HE.

I know I've got broad shoulders, but do I really look like I used to be a man?

I think he was just doing that thing that so many people do, assuming that there's only one wheelchair user in the world, and we're all the same person. Laurence Clark wrote an article about the phenomenon here. As you can see from that article, I'm not the first disabled person to be mistaken for someone of the opposite gender, because someone has paid attention to the wheelchair, but no other identifying facets of the person in question.

I know my boobs aren't very big, but they are there. This is why I like to wear T-shirts with writing across the chest to draw peoples attention to them.

Today was the second time in 5 days I've been mistaken for any old wheelchair user. On Thursday I was on my way to the Fresher's Fayre at uni, when a member of staff from one of the halls of residence came marching up to me.

"Did you get your stuff moved across alright?"

"I don't live on campus..."


I wonder if there's someone out there still struggling to move all their belongings from one hall to another, just waiting for someone to offer them some help...

22 September 2007

Earlier this evening I was pushing from Holloway to Finsbury Park. You see, I was on my way to my nearest Lidl, which is in Finsbury Park, following a tip off from my Mum that in her local store they currently had cat food that my cat can actually eat.

Me and my pussy are very well matched when it comes to food sensitivities.

What I was unaware of before I set off on my journey was that Arsenal were playing at home. And I was trying to get to Lidl at the same time as the crowds were trying to get out of the stadium. Bad timing.

The number 29 bus was going nowhere, so I decided it'd be quicker to get off and push the rest of the way.

This guy walking in the opposite direction to me stopped and pressed himself up against the railing fencing the pedestrians in. I'm used to this reaction from crip-phobes who can't bear the thought of having to share a pavement with a wheelchair user. Like most people who do this, he watched me as I approached.

Usually though, people resume walking once I (the dangerous, terrifying wheelchair user) have passed. I noticed out of the corner of my eye that he didn't. So I looked over my shoulder and he was still staring at me. Obviously at this point I shot him an evil glare. Most gawpers usually take that as their cue to stare at the floor. Not him.

"You're beautiful!" He cried after me.

Which makes the second nutter this week.

First there was the odd, drunk, smelly bloke I met on a number 29 bus coming home from dinner at a couple of friend's house on Wednesday night.

He was asking the usual, boring old "how long have you been in a wheelchair?" crap that all random strangers want to know. Then he said:

"Well, at least you've got a pretty face. If you were single, I'd go out with you."

Obviously, I didn't mention that I am single. I just nodded.

What is it with people thinking that having a pretty face will melt away all access barriers? (He's not the first). Come to think of it - why do only odd ones who think pretty faces remove access barriers think I have a pretty face anyway? Why can't any hot women ever think that?

I'm starting to think the being single is like being unemployed.

You know how the longer you've been unemployed, the lower your chances of finding a job?

I think people look at prospective partners in the same way as employers look at prospective employees.

"Well, they've been on the shelf for a while. Are they up to date with modern techniques and practices?"

Being 28 and having never had a "proper, grown up" relationship I'm starting to feel how I imagine I'd feel if I was still looking for my first job.

"Well, she's never been in this situation before. How can we guarantee she's got the skills to cope? She's never had to use them. Does she even know how to respond to certain situations? Does she know the rules and etiquette?!"

I've had a couple of conversations about this. One person pointed out that "It's also easier to find a new job when you've got one already." A sentiment echoed by another friend when we were having a conversation about polyamory.

"I think polyamory is just unfair... why should some people get hundreds of partners when I can't even find one?"

My friend went on to point out that I'm the only non-poly wheelchair user that she knows. I was pushing over cobblestones at the time, which is about as close as I come these days to intimacy.

20 September 2007

Just now I was flicking back through old blog entries looking for something when I stumbled across the first paragraph of this entry.

I have some shocking news dear readers: Today was my second day back at uni proper. On a Masters course.

Yeah. I know what I said 2 years ago. But I've been bored! And unemployed! At least this gives me something to do, and will (hopefully) make me more employable at the end of it.

I say hopefully, because, well, my MA is in Cult Film & TV. That's right - I'm getting a Masters in watching scary movies and Buffy.

Wish me luck!

09 September 2007

It runs in the family...

Did you know that my cat Betty is a supremely talented blogger as well?

Betty's Blog was yesterday's Catster.com Diary of the Day!

I suppose she deserves some kind of treat for that really.

04 September 2007

I'm finding it hard to adjust to being back in the real world.

I know I was only on a FOCUS project for 6 days... And that was nearly a month ago. But I still haven't quite gotten into the swing of being back in reality.

One of the things I love most about FOCUS is that the staff and other volunteers simply see me as me. They respect me for my knowledge, skills and experience and don't judge me on the basis of my impairment. If you're disabled and reading this I'm sure you can appreciate straight away how far removed such a simple thing is from day-to-day life.

I've been fortunate enough to be able to spend some quality time with other volunteers that were there since the project. LilWatcherGirl and I went to see Harry Potter and the Order of the Phoenix at the IMAX together, for example.

"Right, you hide, I'll hail the bus. When the driver gets the ramp out, appear and get on behind me before the driver has the chance to close the doors!"

Because London buses only have one wheelchair space. As we wandered towards the bus stop we had a little discussion about how we were both going to fit in the one space. Oh, if you can catch a bus without having to have a strategic planning meeting you really don't know what you're missing.

It was coming home from the cinema that night that I really missed being in a FOCUS bubble for the first time. Sure, the project didn't exactly run smoothly (*cough* understatement *cough*) but there were some amazing people there. As LWG and I boarded at the rear ramped door, LWG's OtherArf, being a walkie, boarded at the front door. I heard the driver ask her "Where are they getting off?"

If I wasn't so throughly exhausted (this was a Tuesday, on the Sunday night I'd been up all night with sinus pain, and on the Monday I'd been up all night from taking Sudafed which is kinda like speed) I'd have burst into a screamy rage at him. How dare the driver ask someone else questions about me?

For the record, I don't take sugar.

But, I was too exhausted to fly off the handle. Instead I sat and pondered how much the real world sucks.

The bank holiday weekend was awesome. 4 of us volunteers spent the weekend together in Manchester. I don't really drink much alcohol these days; in fact, so little that I'd kept track of all the alcohol I'd drunk so far this year.

Until the bank holiday. Good times.

Being with a group of FOCUSy types out in the real world is kinda strange, but also very cool.

Being out in the real world I was subjected to the usual rubbish: people patting me sympathetically on the shoulder, people grabbing me and trying to push me, etc, etc. But, I had my bodyguards! Oh yes.

On the Sunday night we were indulging in some dirty street drinking (seeing as none of us could afford bar prices). Being FOCUS folk we all know the FOCUS dance routine to "Shake a Tail Feather" (from The Blues Brothers). And, having had a few drinks we decided that dancing to it on Canal Street would be a wonderful idea.

So, there we were quite happily getting our twist on, minding our own business, dancing away. When some guy decides that he wants to grab the-lady-in-the-wheelchair and start pushing her around. Before I could even start screaming I heard:

"Oi! Fuck off! Do one!"

My bodyguards came to my rescue. Good times. Unfortunately it ruined our dance and destroyed any chance of applause from our audience.

I wish I could take those 3 dirty street drinking scum chums with me wherever I went. Unfortunately 2 live in Manchester and the other in Cambridge. I could've done with them on Friday night when at a Treasure Tones gig some creepy drunk guy decided that I was wonderful. *shudder*

18 August 2007

Dust. High in fat? Low in fat? Dust?

I really should be cleaning my flat. It looks slightly like a bomb has gone off in here.

I returned on Thursday after roaming round the country for a fortnight (Clacton, Leicester, a FOCUS project in Penistone which is the 2nd best named town in the country after Cockermouth, Leicester, Clacton, Manchester, Clacton) and just threw my stuff everywhere. Although to be fair the place was a tip before I went away.

The good news is though... I can't clean! I have been forbidden from taking any antihistamines until after I've been to the hospital on Monday, which means I can't be sending dust up into the air.

Last time I had an allergy test the nice staff at the Royal Throat, Nose and Ear Hospital failed to tell me that you're not supposed to take antihistamines for 3 days prior to the test (and I'm a bit thick so it didn't cross my mind) so they just stuck a load of needles in my arm for nothing. I didn't even react to being stuck with pure histamine.

So, having been antihistamine free for 24 hours so far I'm trying to avoid all allergens. I'm a bit afraid of leaving my flat because there are flowery things all down the street outside my building and they'll make me sneeze my little head off.

So, instead of cleaning, I'm going to take this opportunity to blog about shoes. I know it's a subject I've blogged about before, but after my footwear traumas of this week, I think it's a topic worth revisiting.

When going down hills in my chair I put my right foot on the floor and use it as a brake. This means I get through right shoes rather quickly (and still have an immaculate left one. If anyone knows anyone with no right foot and a size 4 left one that wants some shoes, I've got plenty).

At Kingswood Peak Venture (the site for this summer's FOCUS project) there was a wicked mean evil hill that I had to push up/roll down about a million times a day. The good news is that from pushing up it I now have the upper body strength of Arnold Schwarzenegger (can you believe I spelled that right first time?!?). However, from rolling down the hill and using my right foot as a brake, I completely wore through the sole of my right trainer. This made shoe shopping a rather urgent thing to do once I re-entered the real world.

Then on Monday night whilst in Clacton at my parents I had a somewhat unfortunate incident involving cat food and my left shoe. So Tuesday really, definitely meant New Shoe Day.

Shopping for shoes is usually quite fun. They're the one piece of clothing I can shop for and not come home crying about how I'm too fat. This was before I'd experienced shoe shopping in Colchester.

I scoured the town high and low looking for some Skechers. In the end I did find some in Barrats, but they were all hideously girly. And, well, I'm not.

I decided my best bet was Office. Amazingly I'm not banned from the chain of stores as the last time I went in a branch I was wired and doing a report for Five Live about inaccessible shops. And I did make them and their employees look rather stupid.

So, there I was sitting in the trainers section in the corner of the store browsing. Unsurprisingly seeing as how I was deep in the heart of Essex, most of the trainers on sale were white. This narrowed down my selection somewhat as I'm not overly proud of being an Essex Girl, and it's not neccessarily something I want people to know about me as soon as they look at me.

But, my selection got narrowed down even more. Once I'd ruled out the possibility of wearing white, most of what was left were velcro trainers. I sat there thinking "well, I can't buy velcro trainers, I'm too crippy. I'm gonna look like I've been given them by an Occupational Therapist because I can't tie my own laces." It was bad enough on the FOCUS project last week when we went 10 Pin Bowling and I had to wear velcro shoes because my feet are so small I'm not supposed to be old enough to tie laces.

I was left with a choice of 2 pairs of trainers. One black with blue stars all over them, and one black with pink hearts all over them (and a little skull and crossbones in each heart). I opted for the latter because they seemed more "me" - at the moment I seem to be going through a phase of wearing predominantly pink on my feet.

I informed the shop assistant of my choice and asked if I could keep my new shoes on, seeing as how the old ones were somewhat gross. The shop assistant wouldn't even go near them and made me put the old ones in the box. They're still in there actually. I'd planned on taking them home and throwing them in the washing machine to get the cat food off, and keeping them in case I ever found myself painting or doing something equally messy that required old shoes. But they've been sealed in that box for 4 days now, and I'm scared of opening it. I think I may just have to burn them.

With my new shoes on I rather spontaneously headed up to Manchester to see some singery songwritery types gigging. All night I got compliments of "Cool Vans!" But I couldn't muster up a very enthusiastic response.

The pain had already begun.

I spent the night up in Manchester sleeping on a friend's sofa. At one point I woke up in so much pain I decided to see if gravity would help my ankle and went back to sleep with my legs cocked sideways over the back of the couch.

My theory is that my foot has gotten so used to the nice, comfy arch support in my old Skechers, it now can't cope without it. Or it could just be a random coincidence that my ankle started hurting shortly after I put my new shoes on. After all, my ankle does hurt quite a lot quite often what with there not actually being a proper joint there anymore (it got completely smashed about 20 years ago and is now just a smoosh of bone not resembling a joint in any way).

I guess I've got to go shoe shopping again this week to find some with better arch supports. This time I will not be shopping in Essex.

02 August 2007

If I were president of the world I'd insist on people-washes at bus stops.

They'd work on the same principal as car washes - go through, get clean.

I'm sick of stinky people on public transport. Literally. Yesterday on a 31 bus on my way to a gig I nearly threw up on someone because he smelled so awful.

And it's not like I can escape and move to a different seat - what with being confined to the wheelchair space and all.*

One of the other comics last night nearly shared with me the reason why men who smell of wee do so. But then he decided to go to Leeds instead. I feel all lurchy having been left here.

I'd also force Cadbury's to make Creme Eggs all year round - that way I wouldn't get fat around Easter from scoffing as many as I can before they disappear from stores.

Yes, I know they now do the Dairy Milk with Creme Egg all year round, but they're just wrong. The Creme filling to chocolate ratio is all wrong, and... wrongness!

*Yes, I know there's nothing "confining" about a wheelchair, it's a tool of mobility and enablement. Only being allowed to sit in one spot on the bus however does have something of a confined feel. Yes.

02 April 2007

I was recently watching an episode of The Ellen DeGeneres Show (and when I say that I saw it recently, remember that here in the UK we get the show about 6 weeks behind it's original US air date) where Ellen was interviewing Jennifer Love Hewitt about Ghost Whisperer and the strange hauntings they've really experienced on the set of the show.

I have a theory about the ghosts haunting the show: I think the on set hauntings are a disability rights protest by people who are also now experiencing Spectral Intangibility Syndrome.

We've now seen 2 episodes where the ghost of the episode was disabled. First we had a ghost with autism, then a ghost with muscular dystrophy.

In the episode with the autistic ghost, Melinda explains that "we're all perfect when we step into the light." And, apparently, if you're autistic you can't be perfect the way you are. Before you can step fully into the light you have to stop stimming and make eye contact with the psychic who's done you a favour by reuniting your girlfriend with her mother.

Then there was the guy with Muscular Dystrophy who died aged 17. While he was alive, he felt he couldn't snog the pretty girl at school because "oh, I'm in a wheelchair!"

After death he masters the art of possession. He thinks that in the body of a recently deceased, but non-disabled, corpse he's in with a much better shot. Despite the rigor mortice and smell of rotting and all.

Now do you get why I'm convinced the ghosts must be those of ex-persons that the writers would describe as imperfect?

I started a discussion about the show and it's representation of dead disabled people on a messageboard, and someone replied:

"itd be a downer if on top of like, dying, i had to spend eternity with legs i had no idea what to do with. normal person legs that is."

But the show's writers don't seem to get that. They just think that corpses are sexier than cripples. Hmmmm.... Necrophilia.

OK, I mean, I know I'm not attractive, but that's nothing to do with my impairment - I'm just ugly. But even to people who do find the bent bones to be a turn off, I'd still like to think I'm sexier than a non-disabled blue body being eaten by maggots.

On a slightly random tangent, I once had a dream where I was a ghost, and I tried to go to the cinema. Being invisible, no-one would notice that I'd snuck in without a ticket. The only problem was that being a ghost I couldn't attract anyone's attention to get them to open the wheelchair accessible door - so no free movie for me.

I wish the Ghost Whisperer ghosts well with their demonstration. Viva la... oh, erm... perhaps not "viva", hey?

19 March 2007

Sometimes I wonder how walkies survive without wheelchairs.

I think today I may actually have died of embarrassment if I were not a wheelchair user.

I was in the supermarket. I stood up for a second to reach some cat food off a high shelf. As I sat back down in my chair I heard a tear, and suddenly became aware that my left buttock was colder than my right.

My trousers had ripped down the arse, just to the left of centre. And of course, I was wearing the most hideous pants I own underneath.

My immediate thought was one of relief. Relief that I am a wheelchair user, and could keep my exposed buttock hidden by sitting on it.

This got me thinking about how if I was even more crippled, I'd have been even better off; for if I had been unable to stand to reach that cat food then my trousers wouldn't have ripped as I sat back down. OK, I'd have had to sit there until someone walked past so I could ask them to pass the food. But that's a small price to pay for a warm bum on a snowy day like today.

Some people think that becoming a wheelchair user would be the most embarrassing thing in the world... Ever! Look at all those weirdo's who'd rather be housebound and fully dependent on others just because "Ew! I don't wanna use a wheelchair. I don't wanna look disabled. Gross!"

I would like to run up behind all those people with a knife and slash the back of their trousers to expose their crap pants. Once half of north London has seen their arse, I'd like to ask them then if they still think using a wheelchair would be more embarrassing.

11 January 2007

The little girl who would never grow up.

Today's Dictionary.com Word of the Day is bowdlerize.

I saw the following synopsis on the RSS feed this morning:

"To remove or modify the parts considered offensive."

I'm aware that the word is usually used in relation to literature and the like, but the wording of that synopsis reminded me of something I've been meaning to write about.

You've probably all read by now about the case of Ashley, the girl whose parents fantasy of turning their disabled child into Peter Pan was realised.

This poor girl has been on my mind a lot since the news story first broke. Her, and all the subsequent children who are going to be mutilated for no real reason except that their parents find the idea of a disabled child "cute," but a disabled adult "repulsive."

Don't believe that that's a mindset that exists? Compare the number of charities raising money to buy appropriate equipment such as decent wheelchairs for children compared to the number supporting adults. Compare the income of those raising money for cute kids compared to those raising money for icky gross adults.

Ashley's parents say:

"In our opinion, only parents with special-needs children are in a position to fully relate to this topic."

Thus completely disregarding the opinions and feelings of disabled people (including their daughter) because we're not as important as the non-disableds most crips crawled out of. A fairly typical non-disabled attitude of "I know about you better than you ever possibly could."

Despite the fact that Ashley's parents (who prefer to remain anonymous, presumably to protect them from claims of child abuse) want disabled people to be small, seen and not heard; unsurprisingly disabled people the world over are taking Ashley's side rather than that of her parents.

When a parent is prepared to mutilate and chemically alter their child to such an extent, it's obvious that the child isn't properly cared for. The parents state in their blog that:

She has a sweet demeanour and often smiles and expresses delight when we visit with her;"


"We constantly feel the desire to visit her room."

Visit with her? You're saying the reason you butchered her was so she could continue to live with you, and you could "care" for her at home... yet she's not integrated into family life? You have to "visit" her? What sort of childhood is that?

They go on to say that as a result of the shrinking drugs:

"[Ashley can be] taken on trips more frequently and will have more exposure to activities and social gatherings (for example, in the family room, backyard, swing, walks, bathtub, etc)"

I'm sorry, but there's no reason someone of whatever size can't sit in the family room or go on trips. Wheelchairs and adapted vehicles so a passenger (and even a driver, though with the mental capacity of a 3 month old, I think it's safe to say that Ashley won't be picking up her driving licence any time soon) can travel in their chair have been invented. Hell, I'd have stolen my parents adapted van and given it to her parents if I could have prevented her from being put through this. (My mother reading this is probably now planning on removing my name as a driver from her car insurance policy).

And as for:

"She will continue to fit in and be bathed in a standard size bathtub. Since Ashley can’t sit, she needs to lie down in the bathtub. Without the treatment eventually she would stop fitting in a standard size bathtub."

If it was my child that I loved, I'd buy a bigger bath. I'd fork out to get a bath custom made if I had to (and, let's face it, it'd probably be cheaper than all the butchering, which I bet your medical insurance didn't cover).

These people are desperately clutching at straws to justify what they've done to their daughter. Unfortunately for them, their reasons are transparent. It comes back to disabled kids being cute, disabled adults not. They wouldn't want an unsightly adult that drools and wears a nappy in their family room, they'd be ashamed and embarrassed to take that adult on trips. But as long as she looks like a child and they can pass her off as one in public, she'll remain bearable to have around.

"To put our decision process in perspective, it is not uncommon for parents with children who have cancer or birth defects to pursue significantly more intrusive treatment (chemotherapy or radiation therapy)."

Erm, yeah... right. Forgive me, but aren't chemotherapy and radiation therapy life saving or at least life prolonging treatments? How much longer is Ashley going to live because you whipped out her uterus, whipped off her nawkes and fucked with her hormones. Oh, yeah, that's right:

"She is expected to live a full life."

And was before you started paying doctors to tamper with her.

"There was one legal issue that we needed to investigate related to "sterilisation" of a disabled person. Upon consultation with a lawyer specialising in disability law, we found out that the law does not apply to Ashley's case due to the severity of her disability, which makes voluntary reproduction impossible. The law is intended to protect women with mild disability who might chose to become pregnant at some future point, and should have the right to do so."

I never knew about that piece of legislation existing in America. I'm relieved to read it does. I read on an internet messageboard about an Australian woman with the same impairment as me who, aged 4, broke her leg whilst on holiday and so went to a different hospital than usual. The doctor treating her leg told her parents "we might as well do the hysterectomy while she's here. You don't want a child like this menstruating." Her parents had the sense to scoop her up and run, but she reported that she'd heard that the same doctor had sterilised other young girls with OI, with disastrous consequences.

What does he think's going to happen if girls with OI are left in one piece? That we'll break our pelvis' changing tampons? That we won't be able to maintain a sanitary regimen if our arms are plastered? (I know from personal experience that it's possible to change a tampon even if your dominant arm is in a pot).

Coming back to Ashley, what about her future? What about the people that have woken up from a persistent vegetative state after being given sleeping pills? What about the people thought braindead who have proven that their brain is/was alert the whole time? What about all those autistic people who were thought for most of their lives to be a "vegetable" who turned out to be exceedingly bright when given the right communication tools?

I'm not saying that Ashley will one day suddenly "wake up" and "be normal". But medical advances happen every day, and what about the possibility that she "might"? What if she does and wants to marry and have kids. Shouldn't the law against involuntary sterilisation have protected her too?

"We also had concerns about Ashley's breasts developing and becoming a source of discomfort while [...] strapped across the chest area in her wheelchair, particularly since there is a family history of large breasts and other related issues."

They are aware that chest straps for busty ladies have been invented, right? I've seen them. I have a well endowed friend who has one fitted to her wheelchair. Originally she had fitted a chest strap designed for a man, and, as I recall, she did find it uncomfortable (and if I'm honest, it did make her boobs look kinda silly too). So, she had one designed for women fitted. Problem solved, cheaper and much less painful and intrusive than surgery. Did Ashley's parents consider any alternatives to a knife?

"she is helpless when bothered and her only recourse is to cry until someone comes to her rescue. These episodes are triggered by something as simple as sliding off the pillow or a hair landing on her face and tickling/bothering her, let alone menstrual cramps, adult-level bed sores, and discomfort caused by large breasts."

"The surgeon also performed an appendectomy during the surgery, since there is a chance of 5% of developing appendicitis in the general population, and this additional procedure presented no additional risk. If Ashley's appendix acts up, she would not be able to communicate the resulting pain."

So, how is she going to communicate the pain of a broken bone? When she screams, how are you going to know what's wrong with her? As Flash points out "And how much research has been done into the effects of aging on a child's body? I expect it will bring its own problems sooner or later - osteoporosis for a start."

Her parents claim that:

"We learned that attenuating growth is feasible through high-dose oestrogen therapy. This treatment was performed on teenage girls in the 60s and 70s, when it wasn't desirable for girls to be tall, with no negative or long-term side effects."

But, erm, "no long term side effects?" The women who had that treatment will still only be in their 40s now. And did you research as to how many of them are developing Osteoporosis at that age? Or how severe it is in comparison to other menopausal and post-menopausal women?

Ashley's parents and doctors did at least have the sense to leave behind her ovaries, so she has her hormones which will help protect her against Osteoporosis, but even before she'd had her hormones messed with, she was still a high risk candidate for it because:

"We call her our "Pillow Angel" since she is so sweet and stays right where we place her - usually on a pillow."

Here's news for ya pal: Pillow Angeling ain't good for ya bones. It used to be believed that babies and children with Osteogenesis Imperfecta should be put on a beanbag or pillow, and just left there. Not touched, not encouraged to move, just left still. Until it was found that it was worse for the children concerned (though some doctors who haven't updated their medical knowledge since they became a doctor many moons ago still believe that. I understand that OT's specialising in OI still throw a lot of beanbags in the bin). See, movement helps increase bone density. Not moving doesn't.

I know Ashley doesn't have OI, but she's still immobile, and kids without OI benefit from movement, especially impact exercise.

I appreciate that Ashley won't be running any marathons, but her parents and doctors must be aware of the negative impact that immobility will have on her bones, and so surely they shouldn't be doing anything which may jeopardise her bone health even more? Especially given her inability to communicate where it hurts?

"Ashley has no need for her uterus since she will not be bearing children. This procedure will avoid the menstrual cycle and all the bleeding/discomfort/pain/cramps that are so commonly associated with it."

If Ashley is obviously in pain, and you know it's because she's got her period (which you will, you'll see the blood when you change her incontinence pad), why not resort to a less invasive option, one women have resorted to for many years - painkillers.

"Ashley spent four days in the hospital under close supervision and, thanks to aggressive pain control, her discomfort appeared minimal."

So she's not allergic to painkillers then? So, how about some painkilling drugs in a liquid suspension mixed with her food and administered via her feeding tube? I've just taken some paracetamol (acetaminophen for any American readers) for period pain. Works like a charm. And even if it didn't, there are stronger painkillers available from your doctor, all less drastic than major surgery.

"Large breasts could “sexualize” Ashley towards her caregiver, especially when they are touched while she is being moved or handled, inviting the possibility of abuse."

I'm so surprised I've not read any objections from feminists about this. It only seems to be disabled people offended by what's been done to this child. What her parents are saying is that the way to prevent a woman from being raped is to fix the woman, to remove temptation. Then all is right with the world.

If a child-like body makes a female unsexy, how do Ashley's parents explain paedophilia?

"Additional and incidental benefits include avoiding any possibility of pregnancy, which to our astonishment does occur to disabled women who are abused."

So it's OK to rape a woman who can't tell on her abuser as long as she can't get knocked up? What about the risk of sexual transmitted infections? Or is it OK for a severely learning disabled woman already to lose her mind to syphilis?

If she were my child, I'd do everything I could to protect her from abuse (and I don't mean removing temptation by lopping her boobs off). I'd fill my house full of surveillance equipment if I had to so I could spy on her "caregivers".

It's not often I agree with the opinion columns by Dr Tom Shakespeare, but his article on Ashley is great. While most of the world is trying to convince midgety crips that we should be taller so we can reach the top shelf in the supermarket ourselves (back to my old peeve about the feta cheese) rather than making the world adapt to us, Ashley's parents want one of us shortarses. I'm kinda flattered in a way that according to non-disableds that it's now OK to be short - that short is the new tall.

"Furthermore, given Ashley’s mental age a nine and a half year old body is more appropriate and more dignified than a fully grown female body."

It all comes down to aesthetics. Disabled kids are cute, disabled adults are gross.

"Ashley is a beautiful girl whose body is developing normally with no external deformities."

Well, I'm about to drag my deformed, unsightly, disabled adult self into the bath. Night kids.

02 January 2007

One of life's great mysteries has been solved.

Whenever I tell people how low the IQ of the whole town of Clacton On Sea is, no-one believes me. They don't think it's possible for a whole town to be so thick, and for all the residents of the town to completely live up to the Essex stereotype.

How a whole town came to have such a collectively low IQ has been something that's puzzled me. I'm afraid to drink the water in case it's contagious.

But, now I know.

Me and the cat went to stay with the parents over Christmas. As usual I ate too much, watched lots of crap TV and had to listen to lots of old fogey music (my Mum bought my Dad an iPod for Christmas and guess who got the task of loading music onto it?).

I came home on the 28th because I had tickets to see Much Ado About Nothing in London that night. Having never seen nor read the play before, on the 27th I wanted to go shopping to get a copy of the text to familiarise myself.

"Mum, where's there a bookshop in town?" I asked. I've never lived in Clacton. My parents moved there after I'd moved down to London, so I don't know the town that well.

"I don't think there are any."

And she was right.

Suddenly all made sense. How can Clacton residents educate themselves in a town where no-one is able to access books?

My mother had bought me some new underwear, and one pair of knickers has "sweet enough to eat" written on the crotch. Like anyone would be, I was disturbed by receiving such a gift from a parent. Her defence was "I never really read it," which at first I didn't believe. But now with the knowledge that Clactonians are denied literature, I found myself believing her.

On the night of the 27th, my parents and I played some Scrabble. The first 4 games I won with ease. The fifth and final game was very close between me and Mother, right up until the end. But, I refused to lose at a word game to someone who lives in a town without books: I had a reputation to uphold.

During the course of the games, words I came out with included "sex", "horny" and "groin" which are perhaps words which should be avoided in front of the 'rents. But, in my defence I got "sex" on a double word score and my "groin" landed on a triple word score. I wish that was somehow a metaphor.

So, I returned to London and went to the theatre as planned. The fact that I spent the duration of the performance pondering how pretty Tamsin Greig is rather than paying attention to the plot is something I hold Clacton entirely responsible for: If Clacton had books, my IQ wouldn't have dropped several points over Christmas.

Happy New Year everyone.