In the late-ish 90s I was doing my A Levels for the bazillionth time (ever indecisive I couldn't just pick a subject and stick with it. I kept changing my mind, quitting that subject, and starting something different the following September). Text messaging was the new cool thing and I loved it. Struggling to understand what people are saying when I can't see their lips move meant that mobile telephony was difficult: When you're having a conversation with someone and you're both in the relatively background noise-free environments of your home it's fine, but roaming communication meant people would phone from the pub while you were in the supermarket and the background cacophony drowns out any hope of following the other person's words. But texting... No hearing necessary: Communication on the go without me constantly shrieking "you what?"
The minute someone taught me how to send a text I was in love with the technology. I thought it was the greatest thing since sliced bread. Well, greater really: Slicing bread yourself isn't all that hard. It's certainly easier than decoding a drunk friend's speech at 3am when you've got APD.
My A Level theatre studies teacher was not a convert. She decried that such short, swift, exchanges would be the death of human communication. I, obviously, scoffed. How could such a wonderful idea opening communicative doors possibly be a bad thing?
I'm starting think that she might have been right.
Don't get me wrong, I'm a huge fan of texting, tweeting and Facebooking. Two weeks ago I was in a meeting and the chair tried to avoid using the word "twitter" because he knew I'd start proselytising. Again. But such speedy exchanges have altered the way we interact with each other and I'm starting to pine for the days when people were reliable.
I should say at this juncture that - yes - I know this post makes me a massive hypocrite. I'm well aware that I'm just as flaky as everybody else these days. I'm just as susceptible to life zooming past me as everybody else on the planet. But that doesn't mean I have to like it.
Everything being so immediate has its drawbacks as well as its merits. I like that I can tweet about a ludicrous conversation with a salesperson and have that company's customer services get in touch with me within a couple of hours because my tweet spread like wildfire. When I'm so ill that I can barely remember my own name I like that I can post one word answers to a question on Facebook without feeling a cultural obligation to ask "and how are the kids? Did your dog recover OK from getting his knackers whipped off?" (That last question especially doesn't go down well with someone who doesn't have a dog and you've just conflated them with someone else.)
I hate that not replying to people has become acceptable because it's just the norm now. With a few exceptions I've learned that if I haven't had an Email back from someone within about 6 hours of me sending then I'm not going to get a reply at all. Most notable exception was in May 2011 when I got a reply to an Email I sent in Dec 2008, but most people don't trawl through 2.5 year old Emails.
I think Twitter and Facebook have a large part to play in creating this environment of immediacy. I think we all follow/are friends with more people than more people than we realistically can keep up with. I don't get to see every tweet from every person in my twitter timeline any more because there's just too many tweets. I'd love to have a cull, or at least to stop feeling compelled to add more people, but there are just too many fucking awesome people on twitter that I just can't not follow. Even if it does mean I miss quite a few tweets from everybody because I just can't keep up: Keeping up with a fair few tweets of 198 people somehow seems more acceptable than only following, say, 100 awesome people but getting to see all their posts. Because I get an extra 98 people's worth of awesomeness, even if it's only intermittent awesomeness.
But this blasé attitude has spread beyond twitter into the rest of our lives. We check our Email and we deal with the really urgent stuff and leave the rest "until later". Except with us all being so in the present these days "later" never comes. The next time we check our Email we, once again, deal with the pressing matters while the "till later" stuff gets shunned to page 2 of your inbox and ends up forgotten entirely.
Blogging is much the same. It used to be the case that I'd read all the blog posts in my RSS feed reader. But now I, like everyone else, only read something if I happen to be online when it's posted because we're so present-focussed we don't scroll down any more. Seven years ago your latest blog post would get just as many hits if you posted it at 11pm on a Saturday as it would if you posted it at 11am on a Monday. Even if the hits didn't come in until Monday morning, the post would still ultimately get read. This is no longer the case. I find myself more and more advance-scheduling tweets and blog posts to be published at time when I know the internet will be busy.
All this means that we tend to keep repeating ourselves. When we write a blog post most people won't just tweet the link once and leave it; they'll keep on posting at different times of day to attract an audience. If you send someone an Email and they don't reply you're faced with the choice of having to either just forget about it or chasing them up. I really hate both of these things.
I can get really paranoid about being annoying. Most of the time I'm fine with it: My high-pitched voice, rapid speech, and opinionatedness do not endear me to the masses. Usually it's my conclusion that they're arseholes for not wanting to listen to me. But sometimes, when I need someone's help, I can't just say "oh, fuck it. I won't chase them up." And when I have to chase someone up I become acutely aware of how annoying I am.
(I should be clear that this isn't a self-loathing thing and other people find me not at all annoying; quite the opposite. I had no problem with being annoying until other people told me how grating I was. And they've told me that in great numbers.)
Welfare reform is currently making me crazy. Actually properly crazy. But I refuse to give up fighting just yet because I would actually like some kind of future. I know we've only got a few weeks left before my fate is doomed, but until that time I can't not fight.
This need to fight while extra crazy is just making my neuroses worse. If I Email someone who has got the capacity to be of some use in the fight against welfare reform but I don't get a reply, what should I do? Well, obviously, I should chase them up. My Email's probably fallen to page 5 of their inbox by now and is never going to get a response unless I do. But I really wish they'd reply of their own volition and save me the time spent sat in the bathroom, in the dark, rocking back and forth repeating "oh God, I'm a terrible person. Oh God, I'm so annoying. Why do I have to be such an awful person? Oh God I'm such a bad person. I wish I wasn't so annoying."
And as for repeatedly tweeting the same thing over and over just to get the message out to people who happen to be online at different times of the day: It'd be interesting to do an experiment to see if people found it easier to keep up with all the people they follow if it wasn't the norm for everyone to post the same thing several times. I don't need The Huffington Post to tweet the link to the same article 3 times in as many hours, and if they didn't then perhaps I might have caught the tweet in which a friend was having a crisis.
My main problem with repeatedly tweeting the same content is, again, that I can't do it because it sends me into mini-meltdown about being too annoying. I have few enough followers as it is without boring the few I've got into abandoning me because I just post the same shit again and again. And giving someone an @ message requesting a retweet is another behaviour that'll make me weep with guilt if I try it.
I'm a big fan of the technology that allows us to communicate so instantaneously. I love that I can have these swift non-verbal interactions with anyone anywhere in the world. Twitter and Facebook are so valuable to me as a poorly person. From May to October this year I didn't write anything longer than a tweet because I just wasn't well enough. But these short, rapid, interpersonal exchanges saved me from being completely isolated in that time. You can tweet using your iPod in bed, you can tweet from a hospital waiting room, you can even sometimes get sufficient signal in the hospital basement to send a text between x-rays. You can check Facebook while waiting for your pharmacist to dispense your vast quantities of medicines. Last week was the 3rd anniversary of my mum's death. One of the first things I did when I stopped screaming that night was to tweet the fact because I wanted support from my friends around the world.
It genuinely makes me quite sad that my old teacher turned out to be so prescient about the death of communication; or at least the death of quality communication. I'm a big fan of short, rapid exchanges you get via text or on Twitter; but did we really have to abandon "old school" replying to Emails and so on? Have we as a species become so wrapped up in our fast paced 140-160 characters world that we can't find the time in our lives to read/write anything longer? Have we become so present-orientated that we really can't reply to any Email sent more than 6 hours ago. Even if it's a really important one?
Stop this world. It's spinning too fast. I want to get off.
19 December 2011
02 December 2011
♫...I'm not sure all these people understand. It's not like years ago, The fear of getting caught, Of recklessness and water...♫
There has been much talk over the last few months about the irony of Atos doing the computing for next year’s Paralympics. People thought things were getting even odder when Atos founder Bernard Bourigeaud joined the International Paralympic Committee (IPC) board.
Based on my experience I don’t think it’s that bizarre at all. In fact, again in my experience, Atos and the IPC have more uniting them than separating them.
As a teenager my dream was to be a Paralympic swimmer. All disabled athletes are classified by medical personnel as to their level of impairment. So all prospective Paralympians have had to undergo an Atos-esque assessment before they can compete.
All sports have different classification systems; some like athletics have impairment-specific systems (so people with cerebral palsy compete against people with cerebral palsy and people with dwarfism compete against people with dwarfism... and so on) while other sports like basketball have a pan-impairment system. Swimming uses the latter style system.
The classification system used in swimming for people with physical impairments ranges from 1 to 10, where 1 is the most severely impaired, and 10 is the least severely impaired. A typical 10 will only be missing one hand or less than half a leg. A typical 1 will have almost no use of any part of their body.
The system is designed so that in theory you compete against people of a similar level of impairment to yourself. So in an S6 race you might find a couple of paraplegics, a couple of people with no arms, a couple of people with hemiplegic CP and a couple of people with dwarfism. Wildly different diagnoses, but considered to be of the same *severity* of impairment.
People with a physical impairment will have 3 different classes - an S class for freestyle, backstroke and butterfly; an SB class for breaststroke and an SM class for individual medley. This is because free, back and fly rely mostly on the arms for propulsion but breaststroke relies more on the legs. So while a paraplegic and someone with no arms will be able to race as equals on free, back and fly; the person with no arms would have a massive advantage over a paraplegic in a breaststroke race. So typically the paraplegic will be an S6 SB5 SM6, while the person with no arms will be an S6 SB7 SM6. Yes, this does mean that the person with no arms still has an advantage in the IM race; the system is far from perfect.
After years of training I made it into the GB team for the Europeans’ in Badajoz in '97. I went out to Spain as an S6 SB5 SM6, and came home as an S9 SB9 SM9! This was because the classifiers/the system is only used to dealing with "common" impairments. Osteogenesis imperfecta is rare. They ignored not just one, but four aspects of my impairment when assessing me, and decided that other than 2 duff elbows, one duff knee and one duff ankle I was almost able-bodied. A quick glance at me can tell you that I'm quite clearly much more severely impaired than that!
Osteogenesis is a form of dwarfism. Despite being sent medical evidence from experts the IPC classifiers refused to accept that fact. There was actually a swimmer around at the same time who had achondroplasia – a much more common form of dwarfism – that had had her limbs surgically lengthened and was taller than me. Despite being classified on her height alone, and being taller than me she was an S8 (so lower than me) because they took her dwarfism into consideration; but not mine.
They refuse to believe that hypermobility is impairing. They assess each joint and award it a point score. A low score means it has very little movement; a high score means full range of movement. The IPC refuse to start deducting points again when your joints go far beyond normal range of motion. Instead they just say “aren’t you lucky to be so flexible?” So my inability to keep my fingers together whilst swimming (very important for your hands functioning as paddles) because the joints just aren’t strong enough to resist the force of the water was disregarded. The only joints of mine they didn’t give full points to were my elbows, left knee and left ankle.
You would think that my joints with restricted motion from being repeatedly broken would at least knock off some points, right? Wrong. Like I said, they only accepted I had 4 impaired joints. They totally disregarded the fact that my wrists have been smashed up too.
Because collagen (the protein not formed correctly in OI) is also found in muscles people with OI have poor muscle tone. We can strengthen our muscles with exercise but we’ll always be starting from a lower baseline. At the time of that classification assessment in 97 I was training 7 times a week. As a result my muscles were roughly equivalent in strength to a non-disabled person who does no exercise at all. They didn’t care that I worked my arse off to have the equivalent strength to a lazy person with standard muscle tone; they just marked me down as being of “normal” strength, refusing to accept osteogenesis affects muscles.
The International Paralympic Committee can call you up for reclassification any time they want, but you can only appeal once. I had my appeal in 1999. They ignored medical evidence, consultant's letters, etc and decided that I was still an S9 (though my SB class got reduced to SB8, it didn’t matter because I sucked at breaststroke so never did it).
My one appeal was used up. That was that. I quit swimming in 2000. In recent years I've joined a Masters team, but because of my health I don't get to train that often. Between my stomach, a broken rib and a prolonged infection I haven't been for a swim since July. I've gone training with little fractures many times (in fact the last time I went in July I had a cracked metacarpal) but the rib was a bit too bad; getting out of breath was pretty painful.
For people familiar with reading about experiences of Atos assessments it all sounds fairly familiar, doesn’t it? Ignoring symptoms in a medical assessment in order to find people less impaired than they actually are. Though, actually, I’ve personally found Atos to be fairer: 2 IPC assessments and they both claimed I was less impaired than I am. I’ve only had one Atos assessment thus far and that did, correctly, find me unfit for work. And within the benefits system there are several steps of appeal, the IPC only let you have one.
(In case you’re thinking “how can she be unfit for work if she used to train that much?” I would direct you to many other posts on my blog where I talk about how I’ve always had my mobility impairment but until about 2005 I was “healthy”; I was free from illness. I just had a dodgy musculoskeletal system. But now I have a ton of unrelated health problems rendering me incapable of working.)
Atos are known for making assessments on how a person looks: People with invisible impairments tend to fare worse in the assessment process than people with conditions that can be seen. The IPC employ the same tactic: Part of the assessment process is that they watch you swim. Sounds sensible when they’re assessing how your impairment affects your ability to swim, right? My problem was that I’m a good swimmer; I trained hard and developed excellent front crawl technique. I was penalised for not looking particularly impaired when swimming front crawl, regardless of how impaired I actually was.
Both bodies also are more forgiving for people with better known/understood impairments. If you have cerebral palsy, a spinal cord injury, a missing limb or achondroplasia the IPC assessment criteria accommodates you. Likewise Atos are usually more understanding of people with better known conditions (like cancer) than people with diagnoses that aren't quite so well understood (like ME).
Of course, when the IPC find you less impaired than you actually are it means that you lose your dreams. When Atos come to the same conclusion you can lose a lot more.
Edit August 2023: I said in paragrph 6 of this post "in an S6 race you might find a couple of paraplegics, a couple of people with no arms, a couple of people with hemiplegic CP and a couple of people with dwarfism. And that was true at the time I wrote it in 2011. However, in 2018 the IPC changed some of the the classification system's regulations, and one of the changes meant that all of the double above elbow amputees were moved from the S6 class down one into the S5 class. So you will no longer find anyone with no arms in an S6 race.
I would say "I'm happy to make this clarification", except it's been fucking carnage for the lifelong S5s; and now all medal podia for S5 races are completely dominated by the ex-S6 double above elbow amputees. I watched the heats for the men's S5 50m backstroke at the World Championships in Manchester yesterday morning, and I did not notice even one single man with any other impairment in either heat; because the ex-S6's now completely dominate the classification, it looked like no-one with CP, or a spinal cord injury, etc, decided it was worth bothering entering. In the women's heats there were a couple of swimmers with impairments like CP, who have arms, but it was all the double above elbow amputees who completely dominated. I missed the final of both races because I was out running an errand, but I tuned into the live stream just in time to catch the medal ceremonies for both S5 backstroke races. Obviously all the men's medal winners were double above elbow amputees, because it appears no-one with any other impairment even bothered to enter since the takeover of the classification by those moved down en masse from S6. While in the women's race - where there had been a couple of entrants with arms, even though they must've known they didn't have a chance against the ex-S6s - it was also the case that there was not one single arm to be found on the medal podium.
Having experienced what it feels like to be on the receiving end of unjust decisions by the IPC, I can completely understand why all the other swimmers in the S5 classification (some who may be in their 30s who've been in the S5 class since they started competing in their teens) with conditions like CP, spinal injuries, even different types of multiple amputations, would - 5 years after dozens of ex-S6s took over the S5 class - have reached the point where they've decided "I might as well retire, I just can't race fairly against the ex-S6s, they have too much of an advantage over me."
Based on my experience I don’t think it’s that bizarre at all. In fact, again in my experience, Atos and the IPC have more uniting them than separating them.
As a teenager my dream was to be a Paralympic swimmer. All disabled athletes are classified by medical personnel as to their level of impairment. So all prospective Paralympians have had to undergo an Atos-esque assessment before they can compete.
All sports have different classification systems; some like athletics have impairment-specific systems (so people with cerebral palsy compete against people with cerebral palsy and people with dwarfism compete against people with dwarfism... and so on) while other sports like basketball have a pan-impairment system. Swimming uses the latter style system.
The classification system used in swimming for people with physical impairments ranges from 1 to 10, where 1 is the most severely impaired, and 10 is the least severely impaired. A typical 10 will only be missing one hand or less than half a leg. A typical 1 will have almost no use of any part of their body.
The system is designed so that in theory you compete against people of a similar level of impairment to yourself. So in an S6 race you might find a couple of paraplegics, a couple of people with no arms, a couple of people with hemiplegic CP and a couple of people with dwarfism. Wildly different diagnoses, but considered to be of the same *severity* of impairment.
People with a physical impairment will have 3 different classes - an S class for freestyle, backstroke and butterfly; an SB class for breaststroke and an SM class for individual medley. This is because free, back and fly rely mostly on the arms for propulsion but breaststroke relies more on the legs. So while a paraplegic and someone with no arms will be able to race as equals on free, back and fly; the person with no arms would have a massive advantage over a paraplegic in a breaststroke race. So typically the paraplegic will be an S6 SB5 SM6, while the person with no arms will be an S6 SB7 SM6. Yes, this does mean that the person with no arms still has an advantage in the IM race; the system is far from perfect.
After years of training I made it into the GB team for the Europeans’ in Badajoz in '97. I went out to Spain as an S6 SB5 SM6, and came home as an S9 SB9 SM9! This was because the classifiers/the system is only used to dealing with "common" impairments. Osteogenesis imperfecta is rare. They ignored not just one, but four aspects of my impairment when assessing me, and decided that other than 2 duff elbows, one duff knee and one duff ankle I was almost able-bodied. A quick glance at me can tell you that I'm quite clearly much more severely impaired than that!
Osteogenesis is a form of dwarfism. Despite being sent medical evidence from experts the IPC classifiers refused to accept that fact. There was actually a swimmer around at the same time who had achondroplasia – a much more common form of dwarfism – that had had her limbs surgically lengthened and was taller than me. Despite being classified on her height alone, and being taller than me she was an S8 (so lower than me) because they took her dwarfism into consideration; but not mine.
They refuse to believe that hypermobility is impairing. They assess each joint and award it a point score. A low score means it has very little movement; a high score means full range of movement. The IPC refuse to start deducting points again when your joints go far beyond normal range of motion. Instead they just say “aren’t you lucky to be so flexible?” So my inability to keep my fingers together whilst swimming (very important for your hands functioning as paddles) because the joints just aren’t strong enough to resist the force of the water was disregarded. The only joints of mine they didn’t give full points to were my elbows, left knee and left ankle.
You would think that my joints with restricted motion from being repeatedly broken would at least knock off some points, right? Wrong. Like I said, they only accepted I had 4 impaired joints. They totally disregarded the fact that my wrists have been smashed up too.
Because collagen (the protein not formed correctly in OI) is also found in muscles people with OI have poor muscle tone. We can strengthen our muscles with exercise but we’ll always be starting from a lower baseline. At the time of that classification assessment in 97 I was training 7 times a week. As a result my muscles were roughly equivalent in strength to a non-disabled person who does no exercise at all. They didn’t care that I worked my arse off to have the equivalent strength to a lazy person with standard muscle tone; they just marked me down as being of “normal” strength, refusing to accept osteogenesis affects muscles.
The International Paralympic Committee can call you up for reclassification any time they want, but you can only appeal once. I had my appeal in 1999. They ignored medical evidence, consultant's letters, etc and decided that I was still an S9 (though my SB class got reduced to SB8, it didn’t matter because I sucked at breaststroke so never did it).
My one appeal was used up. That was that. I quit swimming in 2000. In recent years I've joined a Masters team, but because of my health I don't get to train that often. Between my stomach, a broken rib and a prolonged infection I haven't been for a swim since July. I've gone training with little fractures many times (in fact the last time I went in July I had a cracked metacarpal) but the rib was a bit too bad; getting out of breath was pretty painful.
For people familiar with reading about experiences of Atos assessments it all sounds fairly familiar, doesn’t it? Ignoring symptoms in a medical assessment in order to find people less impaired than they actually are. Though, actually, I’ve personally found Atos to be fairer: 2 IPC assessments and they both claimed I was less impaired than I am. I’ve only had one Atos assessment thus far and that did, correctly, find me unfit for work. And within the benefits system there are several steps of appeal, the IPC only let you have one.
(In case you’re thinking “how can she be unfit for work if she used to train that much?” I would direct you to many other posts on my blog where I talk about how I’ve always had my mobility impairment but until about 2005 I was “healthy”; I was free from illness. I just had a dodgy musculoskeletal system. But now I have a ton of unrelated health problems rendering me incapable of working.)
Atos are known for making assessments on how a person looks: People with invisible impairments tend to fare worse in the assessment process than people with conditions that can be seen. The IPC employ the same tactic: Part of the assessment process is that they watch you swim. Sounds sensible when they’re assessing how your impairment affects your ability to swim, right? My problem was that I’m a good swimmer; I trained hard and developed excellent front crawl technique. I was penalised for not looking particularly impaired when swimming front crawl, regardless of how impaired I actually was.
Both bodies also are more forgiving for people with better known/understood impairments. If you have cerebral palsy, a spinal cord injury, a missing limb or achondroplasia the IPC assessment criteria accommodates you. Likewise Atos are usually more understanding of people with better known conditions (like cancer) than people with diagnoses that aren't quite so well understood (like ME).
Of course, when the IPC find you less impaired than you actually are it means that you lose your dreams. When Atos come to the same conclusion you can lose a lot more.
Edit August 2023: I said in paragrph 6 of this post "in an S6 race you might find a couple of paraplegics, a couple of people with no arms, a couple of people with hemiplegic CP and a couple of people with dwarfism. And that was true at the time I wrote it in 2011. However, in 2018 the IPC changed some of the the classification system's regulations, and one of the changes meant that all of the double above elbow amputees were moved from the S6 class down one into the S5 class. So you will no longer find anyone with no arms in an S6 race.
I would say "I'm happy to make this clarification", except it's been fucking carnage for the lifelong S5s; and now all medal podia for S5 races are completely dominated by the ex-S6 double above elbow amputees. I watched the heats for the men's S5 50m backstroke at the World Championships in Manchester yesterday morning, and I did not notice even one single man with any other impairment in either heat; because the ex-S6's now completely dominate the classification, it looked like no-one with CP, or a spinal cord injury, etc, decided it was worth bothering entering. In the women's heats there were a couple of swimmers with impairments like CP, who have arms, but it was all the double above elbow amputees who completely dominated. I missed the final of both races because I was out running an errand, but I tuned into the live stream just in time to catch the medal ceremonies for both S5 backstroke races. Obviously all the men's medal winners were double above elbow amputees, because it appears no-one with any other impairment even bothered to enter since the takeover of the classification by those moved down en masse from S6. While in the women's race - where there had been a couple of entrants with arms, even though they must've known they didn't have a chance against the ex-S6s - it was also the case that there was not one single arm to be found on the medal podium.
Having experienced what it feels like to be on the receiving end of unjust decisions by the IPC, I can completely understand why all the other swimmers in the S5 classification (some who may be in their 30s who've been in the S5 class since they started competing in their teens) with conditions like CP, spinal injuries, even different types of multiple amputations, would - 5 years after dozens of ex-S6s took over the S5 class - have reached the point where they've decided "I might as well retire, I just can't race fairly against the ex-S6s, they have too much of an advantage over me."
21 November 2011
♫...So come on let me entertain you...♫
Nine years ago an old friend sat on his living room floor and uttered one sentence which would change my life. Yesterday I saw him for the first time since that night.
In July 2002 I was doing a week's work in a school back home in Cambridge. It was after my parents had moved from Cambridge to the arse-end of nowhere so I crashed at some friends' house in Ely for the week. One night I was in the pub which had kinda been my local for the last year I lived in Cambridge; when in walked someone I'd gone to Long Road with about 6 years earlier and had not seen since.
He was living in Brighton at the time and was also on a fairly fleeting visit back to Cambridge. After lots of talking we agreed that I could stay at his in Brighton after Pride the following month.
So the night of Pride in 2002 we sat in his living room talking half the night and getting even more wasted than we already were. I mean so wasted that on the train the next day I was grateful for those shitty old trains where wheelchair users had to sit in the guard's van out of sight of all the non-disabled passengers. No-one could see how green I looked and I could occasionally whimper because there was no-one around to hear it.
At one point I said something that made him laugh: Made him laugh so hard that he fell off his chair. Once he'd regained enough composure to be able to speak he said "you should do stand-up."
I don't remember what I said, but I'm sure that under the harsh light of sobriety it wouldn't be remotely entertaining. However, his remark sparked a thought process in my head that I couldn't shake off.
I'd been a fan of stand-up for a long time. Like most people my age, my introduction to comedy was The Mary Whitehouse Experience. The first time I saw it, aged 12 at a sleepover at a friend's house, I remember laughing so hard I couldn't breathe: It was the single greatest thing I had ever seen. In 1992 Both Newman & Baddiel and Punt & Dennis toured the UK and played at the Cambridge Corn Exchange. I remember Newman & Baddiel came to town in April 1992; my 13th birthday was in May and I begged so hard for tickets as an early birthday present. That gig was the first time I saw live stand up, and was followed about 2 months later by seeing Punt & Dennis. Having had my appetite for stand-up whetted I saw several other comics off the telly when they came to town like Jo Brand and Jack Dee. And, of course, Newman & Baddiel and Punt & Dennis a few more times.
I'd always loved performing but the thought of being a stand-up had never crossed my mind. I actually kinda thought that being that funny was like a superpower and it wasn't something that regular people could do. His comment triggered this niggle in my brain that "well maybe I could do it?"
I spent the next two years procrastinating on the idea, while seeing loads of comedy. I regularly went to comedy clubs, to see solo shows at theatres and I went to loads of TV and radio comedy recordings on account of them being free and me being a poor student. It wasn't unheard of for me to go see comedy 4 or 5 times in a week.
When I started doing stand up in November 2004 I very quickly realised that I'd found what I wanted to do with my life. I loved it. Of course, I'm the unluckiest person in the world so stand up dreams were shattered by illness.
I gave it up in 2007 when I became too ill too often to carry on. I was hoping that my health problems would only be temporary and that a few pills here, quick operation there and I'd be good to get back to it. So I decided to bow out before I alienated every promoter in the country. If you're booked to do a gig and you have to cancel on the day because it's a "spend the day in bed with a bottle of morphine" day then you're going to put that promoter in a bind. It doesn't matter that you're genuinely ill, you've left that promoter in a tight spot with a gap in their bill and only a couple of hours to fix things. So they're never going to book you again and are probably going to badmouth you to other promoters that they meet. Luckily the only promoters I pissed off with my health-related unreliableness were small fish rather than any of the really key national bookers. But it was only a matter of time.
It's looking increasingly like I'll probably never be well enough to work again. Kinda ironic really that the current political situation for disabled people in the UK has given me so much I want to say through the medium of comedy; more than I've ever wanted to say before. And the stories I want to tell are so shaped by being ill that I probably wouldn't have the same stories to tell if I was well enough to go out and tell them.
It was politics that led me to bump into him yesterday. I quickly popped in to the Bank of Ideas to check out the access so I could write it up on WtB. I'd been in the building only a few seconds when someone brushed past me and mumbled "Hi Lisa" as he did so. It was him; the guy who'd told me to do stand-up. We didn't chat long because I couldn't stay; this current infection had me feeling like I was dying. Honestly on the bus home I felt almost as nauseated as I did on that aforementioned train journey 9 years ago. We were catching up and he said "I know you're a comedian now..."
"And I have you to thank for that. Do you remember that night 9 years ago when I crashed at yours after Pride? I said something that made you fall off your chair laughing and you told me I should do stand-up."
He didn't remember.
In July 2002 I was doing a week's work in a school back home in Cambridge. It was after my parents had moved from Cambridge to the arse-end of nowhere so I crashed at some friends' house in Ely for the week. One night I was in the pub which had kinda been my local for the last year I lived in Cambridge; when in walked someone I'd gone to Long Road with about 6 years earlier and had not seen since.
He was living in Brighton at the time and was also on a fairly fleeting visit back to Cambridge. After lots of talking we agreed that I could stay at his in Brighton after Pride the following month.
So the night of Pride in 2002 we sat in his living room talking half the night and getting even more wasted than we already were. I mean so wasted that on the train the next day I was grateful for those shitty old trains where wheelchair users had to sit in the guard's van out of sight of all the non-disabled passengers. No-one could see how green I looked and I could occasionally whimper because there was no-one around to hear it.
At one point I said something that made him laugh: Made him laugh so hard that he fell off his chair. Once he'd regained enough composure to be able to speak he said "you should do stand-up."
I don't remember what I said, but I'm sure that under the harsh light of sobriety it wouldn't be remotely entertaining. However, his remark sparked a thought process in my head that I couldn't shake off.
I'd been a fan of stand-up for a long time. Like most people my age, my introduction to comedy was The Mary Whitehouse Experience. The first time I saw it, aged 12 at a sleepover at a friend's house, I remember laughing so hard I couldn't breathe: It was the single greatest thing I had ever seen. In 1992 Both Newman & Baddiel and Punt & Dennis toured the UK and played at the Cambridge Corn Exchange. I remember Newman & Baddiel came to town in April 1992; my 13th birthday was in May and I begged so hard for tickets as an early birthday present. That gig was the first time I saw live stand up, and was followed about 2 months later by seeing Punt & Dennis. Having had my appetite for stand-up whetted I saw several other comics off the telly when they came to town like Jo Brand and Jack Dee. And, of course, Newman & Baddiel and Punt & Dennis a few more times.
I'd always loved performing but the thought of being a stand-up had never crossed my mind. I actually kinda thought that being that funny was like a superpower and it wasn't something that regular people could do. His comment triggered this niggle in my brain that "well maybe I could do it?"
I spent the next two years procrastinating on the idea, while seeing loads of comedy. I regularly went to comedy clubs, to see solo shows at theatres and I went to loads of TV and radio comedy recordings on account of them being free and me being a poor student. It wasn't unheard of for me to go see comedy 4 or 5 times in a week.
When I started doing stand up in November 2004 I very quickly realised that I'd found what I wanted to do with my life. I loved it. Of course, I'm the unluckiest person in the world so stand up dreams were shattered by illness.
I gave it up in 2007 when I became too ill too often to carry on. I was hoping that my health problems would only be temporary and that a few pills here, quick operation there and I'd be good to get back to it. So I decided to bow out before I alienated every promoter in the country. If you're booked to do a gig and you have to cancel on the day because it's a "spend the day in bed with a bottle of morphine" day then you're going to put that promoter in a bind. It doesn't matter that you're genuinely ill, you've left that promoter in a tight spot with a gap in their bill and only a couple of hours to fix things. So they're never going to book you again and are probably going to badmouth you to other promoters that they meet. Luckily the only promoters I pissed off with my health-related unreliableness were small fish rather than any of the really key national bookers. But it was only a matter of time.
It's looking increasingly like I'll probably never be well enough to work again. Kinda ironic really that the current political situation for disabled people in the UK has given me so much I want to say through the medium of comedy; more than I've ever wanted to say before. And the stories I want to tell are so shaped by being ill that I probably wouldn't have the same stories to tell if I was well enough to go out and tell them.
It was politics that led me to bump into him yesterday. I quickly popped in to the Bank of Ideas to check out the access so I could write it up on WtB. I'd been in the building only a few seconds when someone brushed past me and mumbled "Hi Lisa" as he did so. It was him; the guy who'd told me to do stand-up. We didn't chat long because I couldn't stay; this current infection had me feeling like I was dying. Honestly on the bus home I felt almost as nauseated as I did on that aforementioned train journey 9 years ago. We were catching up and he said "I know you're a comedian now..."
"And I have you to thank for that. Do you remember that night 9 years ago when I crashed at yours after Pride? I said something that made you fall off your chair laughing and you told me I should do stand-up."
He didn't remember.
14 November 2011
♫...Tonight, tonight, won't be just any night...♫
I had a problem with last week's episode of Glee. And for a change it had absolutely nothing to do with disability. I mean, obviously, there were a few awful stereotypes about wheelchair users because it wouldn't be Glee without them. My issue was actually about something even more sinister.
I've been asked why I watch Glee when all it does it raise my blood pressure. It's quite simple: The social politics of disability is one of my favourite topics. Television is another one. So representations of disability on TV is my specialist subject. And Glee is so awful and so offensive I watch it for the joy of ranting about how horrific it is. I need to get my righteous indignation from somewhere. And besides; my blood pressure is usually at the low end of normal, occasionally veering properly into low: Getting angry at the telly is probably good for my health.
Or at least, that used to be why I watched Glee. I'm gonna make a confession now and if anyone holds it over my head I swear I'll turn them into a human cannonball as part of a cheerleading display. And that confession is...
When Kurt and Blaine got together they absolutely stole my heart. They're just the cutest little couple. I started enjoying watching the show (or at least their scenes) and making high pitched squeeing noises when they were being all adorable. I think the last time I saw a telly couple so cute was in that episode of Torchwood when Jack met the original Captain Jack Harkness. (Which makes me wonder why the adorable telly couples are always gay men? Lafayette and Jesus in True Blood also stand out in my memory as sweeties. Where are the "awwwww" lesbians? Or even straight couples for that matter? OK, maybe Grissom and Sara were pretty sweet and my opinion was clouded by envy of Grissom because Sara Sidle is the woman of my dreams. Sure there's the budding Brittany/Santana romance in Glee; but Santana's a bitch and Brittany's a caricature: Hardly an "awwwwww" couple. Anyway...)
That Kurt and Blaine are just so adorable they can melt my cold, misanthropic, heart was what made one specific scene in The First Time (link contains spoilers) stand out as particularly horrific.
Double warning of both spoilers and triggers: Below the jump are both plot details for last week's episode and discussions of sexual assault.
I've been asked why I watch Glee when all it does it raise my blood pressure. It's quite simple: The social politics of disability is one of my favourite topics. Television is another one. So representations of disability on TV is my specialist subject. And Glee is so awful and so offensive I watch it for the joy of ranting about how horrific it is. I need to get my righteous indignation from somewhere. And besides; my blood pressure is usually at the low end of normal, occasionally veering properly into low: Getting angry at the telly is probably good for my health.
Or at least, that used to be why I watched Glee. I'm gonna make a confession now and if anyone holds it over my head I swear I'll turn them into a human cannonball as part of a cheerleading display. And that confession is...
When Kurt and Blaine got together they absolutely stole my heart. They're just the cutest little couple. I started enjoying watching the show (or at least their scenes) and making high pitched squeeing noises when they were being all adorable. I think the last time I saw a telly couple so cute was in that episode of Torchwood when Jack met the original Captain Jack Harkness. (Which makes me wonder why the adorable telly couples are always gay men? Lafayette and Jesus in True Blood also stand out in my memory as sweeties. Where are the "awwwww" lesbians? Or even straight couples for that matter? OK, maybe Grissom and Sara were pretty sweet and my opinion was clouded by envy of Grissom because Sara Sidle is the woman of my dreams. Sure there's the budding Brittany/Santana romance in Glee; but Santana's a bitch and Brittany's a caricature: Hardly an "awwwwww" couple. Anyway...)
That Kurt and Blaine are just so adorable they can melt my cold, misanthropic, heart was what made one specific scene in The First Time (link contains spoilers) stand out as particularly horrific.
Double warning of both spoilers and triggers: Below the jump are both plot details for last week's episode and discussions of sexual assault.
08 November 2011
♫...Take the National Express when your life’s in a mess, it’ll make you smile...♫
On October 9th (yes, I know it's taken me nearly a month to write this up, my health sucks) I took part in UK Uncut's Block the Bridge, Block the Bill protest.
Just like the last UK Uncut thingum I went to; I did a few funnies. Only this time the fab @miggiuk filmed it:
I apologise for saying "erm" and "you know" quite so much. You have to remember it's more than 4 years since I was forced to give up comedy due to illness so I'm rather unrehearsed these days. Miggiuk filmed all the comedy and put it on YouTube so after my ums and ahs go watch some other people who are properly funny as a palate cleanser for the soul.
There's a transcript below the jump. I'm afraid I don't have the techno know-how to turn that into synchronised subtitles on the video itself so if anyone does then please let me know.
♫ = National Express by The Divine Comedy
Just like the last UK Uncut thingum I went to; I did a few funnies. Only this time the fab @miggiuk filmed it:
I apologise for saying "erm" and "you know" quite so much. You have to remember it's more than 4 years since I was forced to give up comedy due to illness so I'm rather unrehearsed these days. Miggiuk filmed all the comedy and put it on YouTube so after my ums and ahs go watch some other people who are properly funny as a palate cleanser for the soul.
There's a transcript below the jump. I'm afraid I don't have the techno know-how to turn that into synchronised subtitles on the video itself so if anyone does then please let me know.
♫ = National Express by The Divine Comedy
20 October 2011
Ricky Gervais and the politics of Mong
I've just realised how long it is since I last blogged. I knew I'd been ill for a while but I didn't realise it'd been nearly 6 months.
You know that feeling when you've eaten a huge, huge, meal (e.g. on Xmas day): You feel exhausted because all your blood has rushed to your stomach leaving no energy for the rest of your body to do anything. But at the same time you can't sleep because your digestive system is working so hard. And of course you can't force any food down because you already feel like you're going to explode. Normally the sensation only lasts a couple of hours until your system has made good progress of dealing with the oversized meal.
I've felt like that since the beginning of June. I've spent much of the summer depending on meal replacement drinks because I couldn't force any food down. I've had no energy to do anything (e.g. blog) because my digestive system has been being so irrational and I've also not been sleeping because of the digestive mania which has been increasing the sensation of exhaustion.
Despite the fact that I'd much rather be lazing, watching telly and eating Cadbury's Deadheads (because they're the only thing I've managed to eat today without ending up bent barfing over the bog within 60 seconds) I felt I had to quickly comment about this week's Ricky Gervais mong twitstorm. Everyone else is blogging about it and I just love a bandwagon.
It seems a lot of people don't know the origin of the word, so in a nutshell: It's an impairment-specific insult and refers to people with Down's Syndrome. In the 1860s Dr John Langdon Down decided to classify people with learning difficulties by "which country they looked like they came from" (really!) and he thought people with an extra 21st chromosome looked like they came from Mongolia so named the condition 'Mongolism'. (Later renamed after Dr Down because the Mongolians took offense.) So 'mong' isn't really associated solely with people with DS, it's also a slightly racist term with regards to citizens of Mongolia.
Gervais apparently thinks he has some kind of "right" to reclaim the word "mong"; despite the fact that - as far as I'm aware - he does not have Mongolian citizenship. He maintains that the definition of mong has moved on and it's no longer anything to do with Down's. Though that argument loses credence when you realise that 4 hours later he posted a tweet using the word "twongols", clearly derived from the term "mongols" further establishing the link between "mong" and the outdated diagnosis of mongolism.
It's been quite big news with most papers and radio shows discussing whether or not "mong" is offensive to people with Down's. I've seen quotes from Nicky Clark, Richard Herring and Christina Martin on the offensiveness debate. Odd thing is: They're all non-disabled. Don't get me wrong, they're all great disability rights activists and I value their contributions to making the world a slightly better place. I'm constantly pointing out how much we need non-disabled people to give a crap about disability issues. So I'm gonna repeat it and italicise it this time to really drive home my point: they're all great disability rights activists and I value their contributions. And I have no issue with them giving their opinions on these issues when asked for them.
But it's odd that when the subject is "is mong offensive to people with Down's Syndrome?" That the only people being asked for their opinion on the subject are non-disabled disability rights activists. Radio presenters would never ask "is using 'gay' as a pejorative offensive to homosexuals or has the meaning of the word changed?" Without including LGBT folk in the debate. So why aren't people with Down's Syndrome invited onto the radio to discuss how they feel about Gervais's words? Why is it only non-disabled people who are being asked for their opinion? That's the bit that bothers me; not that non-disabled people are giving their opinions, but that people with Down's are not being asked.
Not only is the exclusion of people with Down's from a debate about Down's almost as problematic as Gervais's original tweets, it also seems like a circular discussion that we'll never reach the end of. People without Down's can express their opinions but until we ask people with Down's Syndome "does mong offend you?" We'll never have a definitive answer to the question "is mong offensive to people with Down's Syndrome?" AOL can run polls asking the general populace their opinion but until people with an extra 21st chromosome are included in the debate it's all very abstract and inconclusive.
I'd be particularly interested to hear the opinion of actor Russell Ramsay who was in an episode of Extras so having worked with Gervais probably has an insight into both sides of the debate. (Random fact: When I was a child my parents would drag me kicking and screaming to church every week. I went to Sunday School with Russell. Haven't seen him in at least 20 years though.)
Despite the fact that we haven't yet got a conclusive answer as to whether or not people with Down's find "mong" offensive today (because they haven't been asked) the history of the word is clearer: It's historically a term of abuse and a form of hate speech. Disablist hate crime is on the up due in no small part to the bullshit rhetoric being peddled by the government and press in attempt to whip up support for welfare reform. People are getting called a "scrounging cunt" in the street or being followed down the road by someone shouting "fucking DLA stick" at them. That Gervais is using an historically abusive term so liberally and encouraging his fans to use it is pouring fuel on the already raging fires of hate. Ironically Gervais is calling people who disagree with him "haters" and stipulating that they only disagree with him because they're jealous of his success. If being successful means that you feel superior to members of oppressed minorities and have a licence to use abusive language then I'd rather remain unsuccessful but a decent human being.
You know that feeling when you've eaten a huge, huge, meal (e.g. on Xmas day): You feel exhausted because all your blood has rushed to your stomach leaving no energy for the rest of your body to do anything. But at the same time you can't sleep because your digestive system is working so hard. And of course you can't force any food down because you already feel like you're going to explode. Normally the sensation only lasts a couple of hours until your system has made good progress of dealing with the oversized meal.
I've felt like that since the beginning of June. I've spent much of the summer depending on meal replacement drinks because I couldn't force any food down. I've had no energy to do anything (e.g. blog) because my digestive system has been being so irrational and I've also not been sleeping because of the digestive mania which has been increasing the sensation of exhaustion.
Despite the fact that I'd much rather be lazing, watching telly and eating Cadbury's Deadheads (because they're the only thing I've managed to eat today without ending up bent barfing over the bog within 60 seconds) I felt I had to quickly comment about this week's Ricky Gervais mong twitstorm. Everyone else is blogging about it and I just love a bandwagon.
It seems a lot of people don't know the origin of the word, so in a nutshell: It's an impairment-specific insult and refers to people with Down's Syndrome. In the 1860s Dr John Langdon Down decided to classify people with learning difficulties by "which country they looked like they came from" (really!) and he thought people with an extra 21st chromosome looked like they came from Mongolia so named the condition 'Mongolism'. (Later renamed after Dr Down because the Mongolians took offense.) So 'mong' isn't really associated solely with people with DS, it's also a slightly racist term with regards to citizens of Mongolia.
Gervais apparently thinks he has some kind of "right" to reclaim the word "mong"; despite the fact that - as far as I'm aware - he does not have Mongolian citizenship. He maintains that the definition of mong has moved on and it's no longer anything to do with Down's. Though that argument loses credence when you realise that 4 hours later he posted a tweet using the word "twongols", clearly derived from the term "mongols" further establishing the link between "mong" and the outdated diagnosis of mongolism.
It's been quite big news with most papers and radio shows discussing whether or not "mong" is offensive to people with Down's. I've seen quotes from Nicky Clark, Richard Herring and Christina Martin on the offensiveness debate. Odd thing is: They're all non-disabled. Don't get me wrong, they're all great disability rights activists and I value their contributions to making the world a slightly better place. I'm constantly pointing out how much we need non-disabled people to give a crap about disability issues. So I'm gonna repeat it and italicise it this time to really drive home my point: they're all great disability rights activists and I value their contributions. And I have no issue with them giving their opinions on these issues when asked for them.
But it's odd that when the subject is "is mong offensive to people with Down's Syndrome?" That the only people being asked for their opinion on the subject are non-disabled disability rights activists. Radio presenters would never ask "is using 'gay' as a pejorative offensive to homosexuals or has the meaning of the word changed?" Without including LGBT folk in the debate. So why aren't people with Down's Syndrome invited onto the radio to discuss how they feel about Gervais's words? Why is it only non-disabled people who are being asked for their opinion? That's the bit that bothers me; not that non-disabled people are giving their opinions, but that people with Down's are not being asked.
Not only is the exclusion of people with Down's from a debate about Down's almost as problematic as Gervais's original tweets, it also seems like a circular discussion that we'll never reach the end of. People without Down's can express their opinions but until we ask people with Down's Syndome "does mong offend you?" We'll never have a definitive answer to the question "is mong offensive to people with Down's Syndrome?" AOL can run polls asking the general populace their opinion but until people with an extra 21st chromosome are included in the debate it's all very abstract and inconclusive.
I'd be particularly interested to hear the opinion of actor Russell Ramsay who was in an episode of Extras so having worked with Gervais probably has an insight into both sides of the debate. (Random fact: When I was a child my parents would drag me kicking and screaming to church every week. I went to Sunday School with Russell. Haven't seen him in at least 20 years though.)
Despite the fact that we haven't yet got a conclusive answer as to whether or not people with Down's find "mong" offensive today (because they haven't been asked) the history of the word is clearer: It's historically a term of abuse and a form of hate speech. Disablist hate crime is on the up due in no small part to the bullshit rhetoric being peddled by the government and press in attempt to whip up support for welfare reform. People are getting called a "scrounging cunt" in the street or being followed down the road by someone shouting "fucking DLA stick" at them. That Gervais is using an historically abusive term so liberally and encouraging his fans to use it is pouring fuel on the already raging fires of hate. Ironically Gervais is calling people who disagree with him "haters" and stipulating that they only disagree with him because they're jealous of his success. If being successful means that you feel superior to members of oppressed minorities and have a licence to use abusive language then I'd rather remain unsuccessful but a decent human being.
06 May 2011
♫...So scared of breaking it that you won't let it bend...♫
There's an awareness day for everything these day. And so today is that day for my mobility impairment. Today is Wishbone Day, raising awareness of osteogenesis imperfecta.
There are lots of mythconceptions about OI around. Most notably the lies peddled in the dreadful M. Night Shyamalan film Unbreakable. Despite it being 11 years old, and you'd think most people would expel a film that dire from their memory, I still get people saying "oh, like in Unbreakable?" When they find out I have OI.
No. Not like in Unbreakable. For starters when Samuel L Jackson "explains" OI in the film he claims that type I is the mildest and it's a spectrum through to type IV which is the most severe and usually fatal at birth if not before (no mention of types V to VIII but I think at least some of those hadn't been discovered then). I am a 31 year old type IV. My mum who was also a type IV made it to 70 before dying from her familial predisposition to drop dead from heart failure at a reasonably young age. OI was not a contributing factor in her death.
It's actually type II that's fatal. Type III is usually pretty severe. Type IV varies from very mild to almost as severe as type III. Type I is different to the other 3 well established types. Bone breakage in types II, III and IV is the result of poor quality collagen. Collagen being the protein that provides reinforcement for bones. Type I is the result of a lack of collagen rather than the right amount of crappy quality collagen so it's quite different to types II - IV. There are type ones around who've had more fractures than me so to claim it's the "mildest" type is untrue.
There are many other inaccuracies in the film. By casting a non-disabled actor to play a person with OI he was, unsurprisingly, lacking all the physical characteristics of the condition. Elijah says he's had about 50 fractures; roughly the same number as me. Medical care of people with OI is constantly improving and Elijah was much older than me so he would've had worse medical care than I did when I did the bulk of my breaking as a child. Between not being very sturdy to begin with and then being constantly broken; bones with OI tend to bend. The bones in my right forearm have a bend in the middle of about 80°. The bones in my left leg are bent to about 30°. Had a I received the medical treatment a child with OI would receive today my bones would be less bent. They probably wouldn't be as straight as a person without OI's, but they'd be straighter than they are.
Elijah, being roughly the same as me in severity, should have bent bones. Bones bent more than mine because even less effort would've gone into straightening them. Samuel L Jackson not having OI has perfectly straight bones. Total credibility fail.
The other glaringly obvious characteristic fail is the eyes. Because collagen is the protein that makes the whites of your eyes white, most people with OI have blue scleras. Most, but not all. However, the people that do have white scleras are not type ones. Types ones always have blue scleras (like I said, it's different to the other types). SLJ does not have blue scleras. They could've made his scleras appear blue of course, in many films and TV shows you have demons and other monsters with completely black eyes. Tinting SLJ's scleras wouldn't have been too hard, whether through contacts or SFX in post-production.
So, yes. My impairment is nothing like Jackson in Unbreakable. Also, spending a lot of time in hospital as a child doesn't turn you into a terrorist.
Unbreakable isn't the only film to peddle poor facts about OI. Amélie is considered by many to be a piece of loveliness. It made me want to punch my TV screen. Amélie's neighbour with OI lives in a padded flat. Though perhaps I could do with his padded tellybox so that if I did end up punching it in frustration I'd be less likely to break my fist.
People with OI do not live in padded houses. There's no point. Breaking your bones is such a random thing. I've fractured my spine while sleeping on something soft and padded whilst conversely I've gotten drunk, fallen down a flight of steps in a club, and not broken a thing. Over-cautiousness can actually result in a reduction in bone density so living in a padded house can make you more, not less, likely to break.
I'm a big fan of forensic TV shows so obviously I watch Bones. OI has cropped up a couple of times, once just as a mention with regard to some ancient bones that Brennan had been looking at. In the episode "The Truth in the Lye" in season 2 they found some bones in a bathtub on a building site. Brennan looked at the bones under a microscope and noticed the lack of collagen.
The big fact fail here was with regard to reproducing. Bones said that in all the other types OI is the result of a spontaneous mutation but sometimes it's inherited in type ones. Hello! Type IV child of a type IV right here! And I'm not unique, I know tonnes of types IIIs and IVs who've had kids. When a person with OI has a child there's a 50% chance of the child inheriting it. Yes, OI is often caused by a spontaneous mutation. In the case of my family my mum was the mutant and I inherited it from her. But claiming that it's only type ones that breed is ludicrous.
The most common storyline when OI crops up in film and TV is that of parents being falsely accused of abuse. It's been done in Home & Away, ER, Casualty and many more shows.
It's an incredibly serious issue and unlike the other OI storylines I've mentioned it's one that's usually fairly realistically represented.
The Home & Away storyline was in the days when Pippa had a house full of foster kids. She fostered a child who'd been taken away from his parents because his recurrent broken bones had led to his parents being accused of abuse. Whilst in Pippa's care he broke his arm. Pippa took him to the local hospital where he was treated by a doctor who didn't sleep through the lecture on OI in her medical training. She diagnosed him and he was returned to his parents.
In ER Carter treated a kid who'd been brought in with a persistent cough. A chest x-ray revealed numerous broken ribs. Carter ordered full body x-rays and found that the kid had old and healed, currently healing, and fresh fractures all over. Carter called the police and social services claiming the mother had been beating the child. Carter performed a lumbar puncture on the baby and then took some more x-rays. Looking at the second set of x-rays Carter noticed that there was a new rib fracture not on the first set of x-rays and realised he'd broken one of the kid's ribs whilst doing the lumbar puncture. This resulted in him diagnosing OI and calling off the hounds.
In real life however, these stories don't always have a happy ending with the kids being returned to their parents. In some cases the children end up being adopted before diagnosis and adoption orders cannot be undone. Even when the child is returned to the parents it's often after the psychological scars of the child being fostered have been inflicted on both parents and child.
These days there are many diagnostic tests available for OI, there's no need for families to be destroyed. But it still happens because doctors don't think to check for it and social workers - in this target-driven post-Baby P era - don't mention it because they're desperate to whisk kids away from parents to meet their targets for kids fostered.
Wishbone Day could be a wonderful way to target doctors and social workers, to make them aware of OI, the clinical presentation, how to differentiate it from abuse, and how to test for it. But from what I've seen that level of awareness-raising aimed at the people who need it isn't happening. It's seems the thrust of Wishbone Day is "wear yellow and do the Facebook status meme," which isn't going to raise awareness amongst the people that need to be made aware. I'm aware that even this post picking apart media myths of OI is slightly redundant because it'll mostly only be read by people that know me so aren't gonna be taken in by Shyamalan's bullshit. So I'm being no more helpful to the cause than those who are simply changing their Facebook status and I throw my hands up and admit that. We need awareness targeted where it matters: A&E staff and social workers. Until that happens I think Wishbone Day is a bit wishy washy.
There are lots of mythconceptions about OI around. Most notably the lies peddled in the dreadful M. Night Shyamalan film Unbreakable. Despite it being 11 years old, and you'd think most people would expel a film that dire from their memory, I still get people saying "oh, like in Unbreakable?" When they find out I have OI.
No. Not like in Unbreakable. For starters when Samuel L Jackson "explains" OI in the film he claims that type I is the mildest and it's a spectrum through to type IV which is the most severe and usually fatal at birth if not before (no mention of types V to VIII but I think at least some of those hadn't been discovered then). I am a 31 year old type IV. My mum who was also a type IV made it to 70 before dying from her familial predisposition to drop dead from heart failure at a reasonably young age. OI was not a contributing factor in her death.
It's actually type II that's fatal. Type III is usually pretty severe. Type IV varies from very mild to almost as severe as type III. Type I is different to the other 3 well established types. Bone breakage in types II, III and IV is the result of poor quality collagen. Collagen being the protein that provides reinforcement for bones. Type I is the result of a lack of collagen rather than the right amount of crappy quality collagen so it's quite different to types II - IV. There are type ones around who've had more fractures than me so to claim it's the "mildest" type is untrue.
There are many other inaccuracies in the film. By casting a non-disabled actor to play a person with OI he was, unsurprisingly, lacking all the physical characteristics of the condition. Elijah says he's had about 50 fractures; roughly the same number as me. Medical care of people with OI is constantly improving and Elijah was much older than me so he would've had worse medical care than I did when I did the bulk of my breaking as a child. Between not being very sturdy to begin with and then being constantly broken; bones with OI tend to bend. The bones in my right forearm have a bend in the middle of about 80°. The bones in my left leg are bent to about 30°. Had a I received the medical treatment a child with OI would receive today my bones would be less bent. They probably wouldn't be as straight as a person without OI's, but they'd be straighter than they are.
Elijah, being roughly the same as me in severity, should have bent bones. Bones bent more than mine because even less effort would've gone into straightening them. Samuel L Jackson not having OI has perfectly straight bones. Total credibility fail.
The other glaringly obvious characteristic fail is the eyes. Because collagen is the protein that makes the whites of your eyes white, most people with OI have blue scleras. Most, but not all. However, the people that do have white scleras are not type ones. Types ones always have blue scleras (like I said, it's different to the other types). SLJ does not have blue scleras. They could've made his scleras appear blue of course, in many films and TV shows you have demons and other monsters with completely black eyes. Tinting SLJ's scleras wouldn't have been too hard, whether through contacts or SFX in post-production.
So, yes. My impairment is nothing like Jackson in Unbreakable. Also, spending a lot of time in hospital as a child doesn't turn you into a terrorist.
Unbreakable isn't the only film to peddle poor facts about OI. Amélie is considered by many to be a piece of loveliness. It made me want to punch my TV screen. Amélie's neighbour with OI lives in a padded flat. Though perhaps I could do with his padded tellybox so that if I did end up punching it in frustration I'd be less likely to break my fist.
People with OI do not live in padded houses. There's no point. Breaking your bones is such a random thing. I've fractured my spine while sleeping on something soft and padded whilst conversely I've gotten drunk, fallen down a flight of steps in a club, and not broken a thing. Over-cautiousness can actually result in a reduction in bone density so living in a padded house can make you more, not less, likely to break.
I'm a big fan of forensic TV shows so obviously I watch Bones. OI has cropped up a couple of times, once just as a mention with regard to some ancient bones that Brennan had been looking at. In the episode "The Truth in the Lye" in season 2 they found some bones in a bathtub on a building site. Brennan looked at the bones under a microscope and noticed the lack of collagen.
The big fact fail here was with regard to reproducing. Bones said that in all the other types OI is the result of a spontaneous mutation but sometimes it's inherited in type ones. Hello! Type IV child of a type IV right here! And I'm not unique, I know tonnes of types IIIs and IVs who've had kids. When a person with OI has a child there's a 50% chance of the child inheriting it. Yes, OI is often caused by a spontaneous mutation. In the case of my family my mum was the mutant and I inherited it from her. But claiming that it's only type ones that breed is ludicrous.
The most common storyline when OI crops up in film and TV is that of parents being falsely accused of abuse. It's been done in Home & Away, ER, Casualty and many more shows.
It's an incredibly serious issue and unlike the other OI storylines I've mentioned it's one that's usually fairly realistically represented.
The Home & Away storyline was in the days when Pippa had a house full of foster kids. She fostered a child who'd been taken away from his parents because his recurrent broken bones had led to his parents being accused of abuse. Whilst in Pippa's care he broke his arm. Pippa took him to the local hospital where he was treated by a doctor who didn't sleep through the lecture on OI in her medical training. She diagnosed him and he was returned to his parents.
In ER Carter treated a kid who'd been brought in with a persistent cough. A chest x-ray revealed numerous broken ribs. Carter ordered full body x-rays and found that the kid had old and healed, currently healing, and fresh fractures all over. Carter called the police and social services claiming the mother had been beating the child. Carter performed a lumbar puncture on the baby and then took some more x-rays. Looking at the second set of x-rays Carter noticed that there was a new rib fracture not on the first set of x-rays and realised he'd broken one of the kid's ribs whilst doing the lumbar puncture. This resulted in him diagnosing OI and calling off the hounds.
In real life however, these stories don't always have a happy ending with the kids being returned to their parents. In some cases the children end up being adopted before diagnosis and adoption orders cannot be undone. Even when the child is returned to the parents it's often after the psychological scars of the child being fostered have been inflicted on both parents and child.
These days there are many diagnostic tests available for OI, there's no need for families to be destroyed. But it still happens because doctors don't think to check for it and social workers - in this target-driven post-Baby P era - don't mention it because they're desperate to whisk kids away from parents to meet their targets for kids fostered.
Wishbone Day could be a wonderful way to target doctors and social workers, to make them aware of OI, the clinical presentation, how to differentiate it from abuse, and how to test for it. But from what I've seen that level of awareness-raising aimed at the people who need it isn't happening. It's seems the thrust of Wishbone Day is "wear yellow and do the Facebook status meme," which isn't going to raise awareness amongst the people that need to be made aware. I'm aware that even this post picking apart media myths of OI is slightly redundant because it'll mostly only be read by people that know me so aren't gonna be taken in by Shyamalan's bullshit. So I'm being no more helpful to the cause than those who are simply changing their Facebook status and I throw my hands up and admit that. We need awareness targeted where it matters: A&E staff and social workers. Until that happens I think Wishbone Day is a bit wishy washy.
03 May 2011
The #no2av campaign's preying on the uneducated
I've just been talking to my dad on the phone. He has a postal vote so has already voted in the referendum.
My dad will be 77 in July. He grew up long, long, before disabled children had any right to be educated. He was ignored in mainstream school and then sent to a segregated college where he was taught nothing much. No-one taught him to read until a family friend took on the challenge when he was 21.
In addition to poor literacy due to no-one bothering to teach him until he was an adult he's almost certainly dyslexic. They didn't do much diagnosing of that during World War II.
In addition to that it's only been in the last 2 and a half years since my mum died that he hasn't had anyone living with him to help him understand things like the instructions on a polling card. He can read well enough to read the names on a card and identify which are his preferences. He can also count to three so would be capable of ranking his preferences in order.
One of the "no" campaign's loudest cries is that AV is too complicated for the masses. That you need to be some kind of genius to work out how to fill in a polling card under AV.
Out of fear that he wouldn't understand how to vote under AV; out of fear that AV is too confusing and too complicated, my father voted "no".
I am furious that the "no" campaign are preying on people like my dad by telling them they're too stupid to understand AV.
If my dad really believed that FPTP was a better system than AV I'd respect his choice. But that's not why he voted "no". The "no" campaign took advantage of his poor education, of his illiteracy, and his almost certain dyslexia by telling him that under AV he wouldn't be able to understand his polling card. They told him he was stupid and he believed it.
How many more people are going to be tricked into voting "no" because the campaign are preying on their poor education, their learning disability or insecurity about their intellect and telling them that they're just not smart enough to get it?
My dad will be 77 in July. He grew up long, long, before disabled children had any right to be educated. He was ignored in mainstream school and then sent to a segregated college where he was taught nothing much. No-one taught him to read until a family friend took on the challenge when he was 21.
In addition to poor literacy due to no-one bothering to teach him until he was an adult he's almost certainly dyslexic. They didn't do much diagnosing of that during World War II.
In addition to that it's only been in the last 2 and a half years since my mum died that he hasn't had anyone living with him to help him understand things like the instructions on a polling card. He can read well enough to read the names on a card and identify which are his preferences. He can also count to three so would be capable of ranking his preferences in order.
One of the "no" campaign's loudest cries is that AV is too complicated for the masses. That you need to be some kind of genius to work out how to fill in a polling card under AV.
Out of fear that he wouldn't understand how to vote under AV; out of fear that AV is too confusing and too complicated, my father voted "no".
I am furious that the "no" campaign are preying on people like my dad by telling them they're too stupid to understand AV.
If my dad really believed that FPTP was a better system than AV I'd respect his choice. But that's not why he voted "no". The "no" campaign took advantage of his poor education, of his illiteracy, and his almost certain dyslexia by telling him that under AV he wouldn't be able to understand his polling card. They told him he was stupid and he believed it.
How many more people are going to be tricked into voting "no" because the campaign are preying on their poor education, their learning disability or insecurity about their intellect and telling them that they're just not smart enough to get it?
01 May 2011
♫...Somebody tell me why I'm on my own, if there's a soulmate for everyone...♫
Written as part of Blogging Against Disablism Day 2011.
...Is a sentence I hear all the time. And it's such a load of horseshit. Women want me about as much as they want a particularly severe case of haemorrhoids and all the confidence in the world can't change that.
On the couple of occasions in life when someone that I don't find attractive has told me they fancy me (I'm 32 this month and it has really has only happened a couple of times) I've been flattered. My ego has been known to break into a little happy dance. But whenever I tell someone that I think they're hot their standard response is to never speak to me again. I really am that repellent to others. It's not being unconfident when people really do think you're repulsive.
But also I'm not lacking in self-esteem; I would totally go out with me. I think I'm smart, funny, reasonably charismatic, interesting, I always smell nice and I enjoy my own company. If anything I'm over-confident to the point of being delusional because it's clear that other people do not view those characteristics in me.
I spent most of my adult life trying to look at the world through "people are innately not disablist bastards" tinted glasses. I wanted to believe that the only reasons people were so repulsed by me were because I'm fat, ugly and annoying. Then I read the results of the 2008 Observer Sex Survey in which 70% of respondents said they'd never shag someone with a "physical disability". And that's only the people disablist enough to admit it to the man from Mori with a clipboard. You can be sure that, actually, many more people would never do one of us but they're too ashamed to admit it because they know that being prejudiced isn't cool.
Accepting that most people would never go out with me because they're disablist was, in a weird way, an exercise in self-acceptance. It made me take off those tinted glasses and accept that the reason I'm perpetually single and haven't had sex for [mumblemumble] years probably isn't because I'm fat, ugly, and annoying (even though I am) but it's because they're discriminatory arseholes.
Of course there are many, many, disabled people in healthy relationships. They managed to find people from that 30% who aren't so prejudiced. With there being so few decent people around I presume that 30% can pick and choose from whoever they want because they're good people. Which does then kinda come back round to the "I'm fat, ugly and annoying" thing. If they've got the pick of the crop then they've got absolutely no reason to choose me.
With gay/bisexual women being a small sector of the population, and only 30% of them being willing to date me on grounds of my impairment there's only going to be a couple of thousand women in the country who would be willing to go out with me. Then you have to take away those that are in relationships, those that wouldn't go out with me because I talk too much, those that might be willing to see past my impairment but wouldn't date a fatty, those who might be willing to give me a chance but geography would make a relationship impossible, etc and there's basically about 12 women left in the country that might be willing to go out with me. And what are the chances that our paths will ever cross or that they'll actually fancy me?
You might think "but surely lesbians would be less disablist than straight people. After all, they understand and experience prejudice too?" Last year a friend cajoled me into trying online dating. It was not a successful experiment. So many women say in their profile "no crazies" and one even said "no strange limps". Disablism is just as ubiquitous among gay people as it is among the rest of the population. And then of course there's all the other reasons women wouldn't want to be with me; they're only interested in skinny women, they have a minimum height requirement (though in my case that's also disablism, my impairment is a form of dwarfism), etc. The experiment lasted a month. I gave up.
Because I've been single for so long people now see me as asexual. Yes there's the general cultural myth that disabled people don't do it, but the perception of me personally goes over and above that. People who know better than to be mythtaken (for example disabled people or people who are currently/have previously dated a disabled person) see me as asexual too. People no longer introduce me to their single lesbian friends because they just perceive me as someone that's alone in perpetuity.
Another area where I think disability/disablism is an issue is around "who is gonna wanna go out with someone who's ill all the fucking time?" You plan a lovely romantic evening out and at the last minute I'm too ill to go. I promise I'm going to cook you an amazing dinner and you get home from work to find me curled up in bed clutching the morphine and gibbering incoherently because I'm in so much pain. You get a cold and know you're going to pass it on to me and that it'll render me useless for 3 weeks because my immune system is so knackered. The only possible perk to dating me is that you know when I say "not tonight love, I've got a headache" that I'm really telling the truth.
If I'd been in a relationship with someone when I got sick I think it'd be a different story, I don't think they'd have dumped me for being ill. But when someone's out looking for their perfect partner is "chronically ill" really going to woo them?
Of course, being too ill to go out a lot of the time and being too poor to go out all the time (because my weekly income on benefits is £67 a week short of the amount recommended by the Joseph Rowntree Foundation for a minimum standard of living.) does mean that my chances of crossing paths with those aforementioned 12 women who might be willing to give me a go is even slimmer.
Another thing that makes me unattractive is that I'm not good at being what I'm supposed to be. There's partly the fact that women are supposed to be quiet and nice and lovely, and I'm loud and sarcastic and rude. But the main issue is the disablist notions of what a disabled person is supposed to be. Disabled people are supposed to be seen and not heard. We're supposed to be all smiles and not tell people who patronise us to "fuck off". We're supposed to be grateful for scraps of access and not complain when we're treated unfairly. We're basically supposed to look and act like we've just rolled out of a Children In Need appeal.
I do make myself heard. All the time. I'm extremely loud and outspoken. I will swear at people who belittle me. I will complain about bad access or poor treatment. I'm rude and sarcastic and misanthropic. Even as a child I was never cute enough for CiN. Instead of getting picked for "make a wish" type trips to Disneyworld, I got banned from school holidays.
Last year I was at an academic conference and one of the speakers was talking about academic theories of cuteness. It was so interesting. One of the things she pointed out was that things that are considered cute are often rendered impaired and she gave the example of Hello Kitty not having a mouth. Hello Kitty is considered cute in part because she can't talk back. I talk back constantly and in a society that says disabled people should only be tolerated if they're adorable I'm a pariah.
As if all this wasn't enough to guarantee me a life of chronic singledom, I'm socio-economically unappealing thanks to the government's benefits bullshit which means that the only women I could ever live with are someone who is also on benefits or someone who's rich enough to "keep" me. And as anyone who's ever met me can confirm; I'm independent almost to the point of self-destructiveness. Me being a "kept" woman would almost certainly result in bloodshed.
At the moment if I were to move in with a partner who had a job I'd lose my Housing Benefit and my Income Support leaving me with my Incapacity Benefit for any contributions to running of the household and anything I wanted for myself (like my addiction to Lush). I'd also still have my DLA to cover the extra costs of being disabled. Losing Income Support would mean I'd lose my free prescriptions, my free NHS dentistry and my subsidised glasses. So I'd be a moderate financial burden on my other half.
But under the plans for Employment and Support Allowance (ESA) I'd only get to keep the non-means tested bit (the equivalent bit to Incapacity Benefit) for the first year of us living together. Then my only income would be my DLA, which is already accounted for because disability is expensive. I would be a total financial burden on my partner. "If we move in together you'll have to financially support me completely," isn't going to win hearts.
A couple of months ago I was having dinner with my doppelgänger/clone/mini-me. She's planning to move to London when she graduates from uni. She said that my inability to get a girlfriend worries her. She'd assumed that being a lesbian in London was like being a kid in a sweet shop. I think that's a really good analogy...
Imagine you're staying at your diabetic dad's sugar-free house. You're lagging in energy, you've got stuff you need to get done and you need a sugar fix. You find a slightly dusty Werther's Original in the back of a drawer. It looks a bit gross but you eat it because it's that or nothing.
Imagine you're in a sweet shop. There's thousands of delicious looking sugary things wall-to-wall. In the corner you spot one lowly, dusty, Werther's Original. You wouldn't touch it with a bargepole when there are so many other wonderful things to choose from.
I'm that dusty Werther's Original. When I lived somewhere less well populated, and certainly with a smaller gay population, the odd woman was willing to go on a date with me. In London any lesbian has a plethora of women to choose from; so why on earth would she choose the sickly cripple who also happens to be fat, ugly, annoying, is rubbish at confirming to social rules and is a financial burden?
With 70% of people being too disablist to date me and the remaining 30% being put off by my looks, my behaviour that doesn't conform to the social roles expected of me, my being a financial burden or simply just not fancying me; how can those people who say "You could get a girlfriend, you just need to be more confident," really believe the words coming out of their mouths? Especially when I'm already confident beyond the level I should be given my lack of hotness?
It's quite depressing that with quite a high level of certainty my future involves dying alone and getting devoured by my 37 cats. There are lots of things that could change that, as a culture we could address the attitudes to disabled people that result in 70% of people being unwilling to shag me. We could fix the benefits system so I wouldn't be forced into being a financial drain on a partner. We could fix our social ideals of what a "good" disabled person is. But telling me to be more confident won't make any difference whatsoever.
"You could get a girlfriend, you just need to be more confident..."
...Is a sentence I hear all the time. And it's such a load of horseshit. Women want me about as much as they want a particularly severe case of haemorrhoids and all the confidence in the world can't change that.
On the couple of occasions in life when someone that I don't find attractive has told me they fancy me (I'm 32 this month and it has really has only happened a couple of times) I've been flattered. My ego has been known to break into a little happy dance. But whenever I tell someone that I think they're hot their standard response is to never speak to me again. I really am that repellent to others. It's not being unconfident when people really do think you're repulsive.
But also I'm not lacking in self-esteem; I would totally go out with me. I think I'm smart, funny, reasonably charismatic, interesting, I always smell nice and I enjoy my own company. If anything I'm over-confident to the point of being delusional because it's clear that other people do not view those characteristics in me.
I spent most of my adult life trying to look at the world through "people are innately not disablist bastards" tinted glasses. I wanted to believe that the only reasons people were so repulsed by me were because I'm fat, ugly and annoying. Then I read the results of the 2008 Observer Sex Survey in which 70% of respondents said they'd never shag someone with a "physical disability". And that's only the people disablist enough to admit it to the man from Mori with a clipboard. You can be sure that, actually, many more people would never do one of us but they're too ashamed to admit it because they know that being prejudiced isn't cool.
Accepting that most people would never go out with me because they're disablist was, in a weird way, an exercise in self-acceptance. It made me take off those tinted glasses and accept that the reason I'm perpetually single and haven't had sex for [mumblemumble] years probably isn't because I'm fat, ugly, and annoying (even though I am) but it's because they're discriminatory arseholes.
Of course there are many, many, disabled people in healthy relationships. They managed to find people from that 30% who aren't so prejudiced. With there being so few decent people around I presume that 30% can pick and choose from whoever they want because they're good people. Which does then kinda come back round to the "I'm fat, ugly and annoying" thing. If they've got the pick of the crop then they've got absolutely no reason to choose me.
With gay/bisexual women being a small sector of the population, and only 30% of them being willing to date me on grounds of my impairment there's only going to be a couple of thousand women in the country who would be willing to go out with me. Then you have to take away those that are in relationships, those that wouldn't go out with me because I talk too much, those that might be willing to see past my impairment but wouldn't date a fatty, those who might be willing to give me a chance but geography would make a relationship impossible, etc and there's basically about 12 women left in the country that might be willing to go out with me. And what are the chances that our paths will ever cross or that they'll actually fancy me?
You might think "but surely lesbians would be less disablist than straight people. After all, they understand and experience prejudice too?" Last year a friend cajoled me into trying online dating. It was not a successful experiment. So many women say in their profile "no crazies" and one even said "no strange limps". Disablism is just as ubiquitous among gay people as it is among the rest of the population. And then of course there's all the other reasons women wouldn't want to be with me; they're only interested in skinny women, they have a minimum height requirement (though in my case that's also disablism, my impairment is a form of dwarfism), etc. The experiment lasted a month. I gave up.
Because I've been single for so long people now see me as asexual. Yes there's the general cultural myth that disabled people don't do it, but the perception of me personally goes over and above that. People who know better than to be mythtaken (for example disabled people or people who are currently/have previously dated a disabled person) see me as asexual too. People no longer introduce me to their single lesbian friends because they just perceive me as someone that's alone in perpetuity.
Another area where I think disability/disablism is an issue is around "who is gonna wanna go out with someone who's ill all the fucking time?" You plan a lovely romantic evening out and at the last minute I'm too ill to go. I promise I'm going to cook you an amazing dinner and you get home from work to find me curled up in bed clutching the morphine and gibbering incoherently because I'm in so much pain. You get a cold and know you're going to pass it on to me and that it'll render me useless for 3 weeks because my immune system is so knackered. The only possible perk to dating me is that you know when I say "not tonight love, I've got a headache" that I'm really telling the truth.
If I'd been in a relationship with someone when I got sick I think it'd be a different story, I don't think they'd have dumped me for being ill. But when someone's out looking for their perfect partner is "chronically ill" really going to woo them?
Of course, being too ill to go out a lot of the time and being too poor to go out all the time (because my weekly income on benefits is £67 a week short of the amount recommended by the Joseph Rowntree Foundation for a minimum standard of living.) does mean that my chances of crossing paths with those aforementioned 12 women who might be willing to give me a go is even slimmer.
Another thing that makes me unattractive is that I'm not good at being what I'm supposed to be. There's partly the fact that women are supposed to be quiet and nice and lovely, and I'm loud and sarcastic and rude. But the main issue is the disablist notions of what a disabled person is supposed to be. Disabled people are supposed to be seen and not heard. We're supposed to be all smiles and not tell people who patronise us to "fuck off". We're supposed to be grateful for scraps of access and not complain when we're treated unfairly. We're basically supposed to look and act like we've just rolled out of a Children In Need appeal.
I do make myself heard. All the time. I'm extremely loud and outspoken. I will swear at people who belittle me. I will complain about bad access or poor treatment. I'm rude and sarcastic and misanthropic. Even as a child I was never cute enough for CiN. Instead of getting picked for "make a wish" type trips to Disneyworld, I got banned from school holidays.
Last year I was at an academic conference and one of the speakers was talking about academic theories of cuteness. It was so interesting. One of the things she pointed out was that things that are considered cute are often rendered impaired and she gave the example of Hello Kitty not having a mouth. Hello Kitty is considered cute in part because she can't talk back. I talk back constantly and in a society that says disabled people should only be tolerated if they're adorable I'm a pariah.
As if all this wasn't enough to guarantee me a life of chronic singledom, I'm socio-economically unappealing thanks to the government's benefits bullshit which means that the only women I could ever live with are someone who is also on benefits or someone who's rich enough to "keep" me. And as anyone who's ever met me can confirm; I'm independent almost to the point of self-destructiveness. Me being a "kept" woman would almost certainly result in bloodshed.
At the moment if I were to move in with a partner who had a job I'd lose my Housing Benefit and my Income Support leaving me with my Incapacity Benefit for any contributions to running of the household and anything I wanted for myself (like my addiction to Lush). I'd also still have my DLA to cover the extra costs of being disabled. Losing Income Support would mean I'd lose my free prescriptions, my free NHS dentistry and my subsidised glasses. So I'd be a moderate financial burden on my other half.
But under the plans for Employment and Support Allowance (ESA) I'd only get to keep the non-means tested bit (the equivalent bit to Incapacity Benefit) for the first year of us living together. Then my only income would be my DLA, which is already accounted for because disability is expensive. I would be a total financial burden on my partner. "If we move in together you'll have to financially support me completely," isn't going to win hearts.
A couple of months ago I was having dinner with my doppelgänger/clone/mini-me. She's planning to move to London when she graduates from uni. She said that my inability to get a girlfriend worries her. She'd assumed that being a lesbian in London was like being a kid in a sweet shop. I think that's a really good analogy...
Imagine you're staying at your diabetic dad's sugar-free house. You're lagging in energy, you've got stuff you need to get done and you need a sugar fix. You find a slightly dusty Werther's Original in the back of a drawer. It looks a bit gross but you eat it because it's that or nothing.
Imagine you're in a sweet shop. There's thousands of delicious looking sugary things wall-to-wall. In the corner you spot one lowly, dusty, Werther's Original. You wouldn't touch it with a bargepole when there are so many other wonderful things to choose from.
I'm that dusty Werther's Original. When I lived somewhere less well populated, and certainly with a smaller gay population, the odd woman was willing to go on a date with me. In London any lesbian has a plethora of women to choose from; so why on earth would she choose the sickly cripple who also happens to be fat, ugly, annoying, is rubbish at confirming to social rules and is a financial burden?
With 70% of people being too disablist to date me and the remaining 30% being put off by my looks, my behaviour that doesn't conform to the social roles expected of me, my being a financial burden or simply just not fancying me; how can those people who say "You could get a girlfriend, you just need to be more confident," really believe the words coming out of their mouths? Especially when I'm already confident beyond the level I should be given my lack of hotness?
It's quite depressing that with quite a high level of certainty my future involves dying alone and getting devoured by my 37 cats. There are lots of things that could change that, as a culture we could address the attitudes to disabled people that result in 70% of people being unwilling to shag me. We could fix the benefits system so I wouldn't be forced into being a financial drain on a partner. We could fix our social ideals of what a "good" disabled person is. But telling me to be more confident won't make any difference whatsoever.
25 April 2011
Pride and St George
If you've been hiding under a rock and not seen the flags everywhere, it might have escaped your attention that Saturday was St George's day; a day that's typically associated with racists and bigots, the EDL and the BNP.
This year I've seen several attempts from decent people to reclaim the day from the fascists, to take pride in England being the diverse place it is. After all, St George was Palestinian so he seems a bit of an odd role model for the EDL to revere.
The trouble is that I couldn't be less proud of being English.
And that list barely scratches the surface.
You could argue that the decisions made by the government don't necessarily reflect those of the populace as a whole, that the lies printed in the press aren't emblematic of the opinions of the nation. Except they are. We're a democracy, we voted for this government. Look at the sea of blue across England. It's the English that voted Tory rather than other parts of the UK. As for the press? If people stopped buying the lies, the papers would stop printing them.
So could someone, please, tell me why I should be proud of England when England so clearly isn't proud of me?
This year I've seen several attempts from decent people to reclaim the day from the fascists, to take pride in England being the diverse place it is. After all, St George was Palestinian so he seems a bit of an odd role model for the EDL to revere.
The trouble is that I couldn't be less proud of being English.
- Universities in England are charging ever increasing fees, this is not true for all other parts of the UK. The exorbitant amounts are a major disincentive for people from a background like mine to get an education.
- English older and disabled people are having to pay more for less home care. This isn't true of all of the UK, Scottish older people get free care.
- People living in care homes are facing bigger bills for less safe care homes and DLA recipients living in care homes will be losing their mobility component from 2013.
- The government are completely dismantling the welfare state. Disabled people are killing themselves because they can't afford to live.
- The government is planning to completely dismantle the NHS in England. I had one experience of NHS outsourcing to private healthcare providers; I waited a year to have my bust ankle MRIed.
- Stories of police violence seem almost daily while hate crimes against disabled people are frequent and rarely appropriately handled by the authorities.
- It's the 21st century and gay people can't get married.
- The government is considering scrapping our anti-discrimination legislation.
- We have misogynists, homophobes and disablists in parliament.
- Our newspapers tell daily lies about benefits claimants, which results in an increase in the aforementioned disablist hate crime.
And that list barely scratches the surface.
You could argue that the decisions made by the government don't necessarily reflect those of the populace as a whole, that the lies printed in the press aren't emblematic of the opinions of the nation. Except they are. We're a democracy, we voted for this government. Look at the sea of blue across England. It's the English that voted Tory rather than other parts of the UK. As for the press? If people stopped buying the lies, the papers would stop printing them.
So could someone, please, tell me why I should be proud of England when England so clearly isn't proud of me?
11 April 2011
♫... Pull up to the bumper, get out of the car...♫
Our ever so delightful Mayor of London has come up with another plan to make the nation despise people who don't "look disabled" just that little bit more.
Writing in The Torygraph 2 months ago he proclaimed that the only people who really deserve Blue Badges are wheelchair users, which will no doubt pour further fuel on existing fires around who should be eligible for what.
If you spend much time hanging out in crippy areas of the web you'll come across debates around who it is that needs spaz parking spaces the most: In the red corner you'll have the walkies who need to park near to the door of a store because their ability to walk is extremely limited and if they can't park near the door they can't manage to do their shopping. While over in the green corner you'll have wheelies who need the wider bays to get their chair alongside their car to transfer into it.
In fact the walkies vs wheelies parking debate was even the B story in an episode of House a few years ago when a wheelchair-using researcher got a job at the hospital and Cuddy re-allocated House's parking space to her.
I should make clear that not all disabled people are so selfish that they think that only people with their flavour of impairment are genuine and everyone else is on the take; but sadly there are sufficient people so blinkered that they can't see someone else's perspective that it's a debate that'll go on for years to come. And BoJo just put his PomPoms on to encourage that battle. Presumably so disabled people will keep fighting amongst themselves rather than uniting and turning their energies against him around issues like all the tube accessibility upgrades he cancelled.
I see both sides of the debate: I use a wheelchair but I also walk a bit. Ordinarily when parking I need room behind my car to get my wheelchair out of the boot and assemble it. But there are occasions when I walk away from my car, like a couple of months ago when I had to go to the supermarket shortly after dislocating my shoulder. Walking is excruciatingly painful for every joint in my feet and legs - hence the usual wheelchair usage - but given the state my shoulder was in on that occasion, pushing my wheelchair would've hurt even more. To make the supermarket doable at all I needed to be able to park right by the door to minimise the distance walked.
However, even when I walk I'm still visibly disabled. I have an extremely pronounced limp, I'm of restricted growth and just one glance at my ankles will tell you that ankles aren't supposed to be shaped like that. But there are genuinely disabled people who are invisibly impaired who are no doubt who Mr J has in mind when he says:
I don't remember him, he died when I was 2, but my granddad had an Orange Badge (this was long before they became Blue Badges in 2000) because his lung problems caused him to struggle to walk. Apparently for the first few steps after getting out of the car he looked quite sprightly. It was only after a few steps that the war veteran began struggling to breathe. But he would've been "looking normal" long enough to press the central locking button (if they'd had central locking in his lifetime) thus be the recipient of Johnson's suspicions.
Gardner and Johnson propose that wheelchair users get an extra badge and "special" bays that can't be used by non-wheelchair using disabled people. Would I need 2 badges, one for the days when I'm using my chair and one for the days when I'm not? Because I can walk a little bit would I be ineligible for the "W badge"? If so, then Gardner would be ineligible too; we've all seen him using a zimmer on the telly rather than his chair:
Boris also seems to have some trouble understanding who is actually eligible for a Blue Badge. He constantly refers to Blue Badge holders as "disabled drivers" and, yes, drivers do make up a significant number of BB users. But there are also a great number of BB holders who don't or can't drive. I think I was 5 when I got my first badge. The general minimum age has since been lowered to 2 but children younger than two can still get a badge if the child either:
And obviously children that young can't drive! Then there are people who are old enough to drive but can't. My dad can't even push his wheelchair in a straight line at less than one mph, you wouldn't want him driving a vehicle that can do 100mph. Despite being driven everywhere by other people he still needs to park in Blue Badge bays because of the space needed to deploy the lift on his wheelchair accessible van. The argument of "but the driver could drop him off and then park the vehicle elsewhere," doesn't really work when someone takes as long to get out of the vehicle as my dad. Then of course there's people who can't be left alone while the driver parks the car somewhere else because they need constant assistance/supervision.
I do agree with Johnson that Blue Badge fraud is a huge problem. 6 years ago I blogged when I fell victim to Blue Badge theft for the first time. A year later I got a phone call from the police telling me that the badge had been found during a routine 'stop and search'. This was around about when I fell victim to Blue Badge theft for the second time. My car was broken into a third time later that year, but this was after my parents had bought me a Blue Badge lock for my birthday so the prospective thieves couldn't actually get the badge. I'd be thrilled if there was a clampdown on fraudulent BB use because if it were harder to get away with using a badge that isn't yours then I'd have to pay my insurance excess a little less often.
Parking can be incredibly difficult. Take my local Sainsbury's as an example. They have 7 Blue Badge bays on the surface and 296 regular bays in their underground car park. The Department for Transport recommends that at least 6% of the spaces for shopping be Blue Badge bays (plus one more BB bay for each disabled employee). Obviously my local supermarket falls far, far short of that 6%. I couldn't use the underground car park if I wanted to because there is no lift down to it. I can only shop in my nearest supermarket if one of the measly 7 bays is empty. And they rarely are. The store has such a half-arsed attitude to patrolling the bays; at any given time there are on average 3 or 4 bays occupied by cars not displaying badges and the remaining 3 or 4 bays are occupied by Blue Badge holders, whether the badge is being used legitimately or fraudulently. Which means that I usually drive into the car park, discover I can't park and take my custom to the Morrison's a little bit further away. I've tried queueing for a bay but this usually results in me being subjected to harassment because being only 31 people assume I can't actually be disabled until they see me in my wheelchair or limping.
If Sainsbury's put in the effort to clamp down on people parking in those pitiful 7 bays either without a Blue Badge or using a Blue Badge that was issued to someone not present then they'd get more custom from local disabled people. I know of other disabled people in Camden who don't bother with the store at all, they just go straight to supermarkets with adequate parking.
All Blue Badges have a photo of its owner on the back. The following are allowed to check Blue Badges to see if the person the badge is issued to is present:
If you're asked to show your badge and refuse you can be subjected to a fine. I've been the holder of a badge (blue since 2000, orange before that) for 26 years and I've never, not even once, been asked to present it for inspection to prove that I'm the rightful owner. As I've said before, it's pretty obvious that I'm disabled when I get out of the car and either get in my wheelchair or limp away. But as I've also said already, you can't see my impairment whilst I'm still seated in the car. I recall one occasion when I parked on a single yellow line right in front of a traffic warden. His face lit up and he held his little computer thingum ready to issue a ticket. I put my Blue Badge and clock on the dashboard and he looked disappointed and walked away. He had a perfect opportunity to check that my badge was being used by the person it's issued to, but didn't bother.
The day before BoJo wrote his piece The Sunday Telegraph wrote that around half the Blue Badges currently in use are being used fraudulently. The fab Full Fact investigated but could neither confirm or deny the claim. Based on my own experience of Blue Badge theft the stat isn't surprising at all. After all, at one point there were 3 Blue Badges floating around with my name on; the one in my possession and the 2 that had been stolen from my car.
Johnson twisted the wording in his article to make the 50% stat mean something very different. What he said was:
It's the use of "going to" rather than "being used by" which utterly changes the meaning. Those two stolen badges of mine were being used fraudulently, but they weren't issued to someone that didn't need one, they were issued to me. This trick of language reiterates my earlier point that BoJo is trying to stir up tensions amongst disabled people to keep us divided.
The government keeps on with this rhetoric about how benefit reform is to "weed out the scroungers" whilst "protecting the most vulnerable". It's utter bull of course, they're planning to cut the DLA bill by 20% despite the fact that only 0.5% of claims are fraudulent. But there are many, many, disabled people who think that they'll be OK because they're genuinely disabled (despite there being a 1 in 5 chance they'll lose their DLA) and they constantly moan about the (almost non-existent) fakers. On Facebook and so on I've seen many people with my own impairment moaning about people that don't look disabled getting benefits because that's the kind of bile this government is encouraging. And with BoJo's ideologically driven article he's pushing that Tory agenda even further in encouraging wheelchair users to be (even more) hateful of ambulant disabled people, while paying almost no attention to the real problem: That of theft and fraudulent use. A problem that could be dramatically reduced if only traffic wardens used their powers to check badges were being rightfully used.
Johnson actually had the gall to say:
Oh the irony...
Writing in The Torygraph 2 months ago he proclaimed that the only people who really deserve Blue Badges are wheelchair users, which will no doubt pour further fuel on existing fires around who should be eligible for what.
If you spend much time hanging out in crippy areas of the web you'll come across debates around who it is that needs spaz parking spaces the most: In the red corner you'll have the walkies who need to park near to the door of a store because their ability to walk is extremely limited and if they can't park near the door they can't manage to do their shopping. While over in the green corner you'll have wheelies who need the wider bays to get their chair alongside their car to transfer into it.
In fact the walkies vs wheelies parking debate was even the B story in an episode of House a few years ago when a wheelchair-using researcher got a job at the hospital and Cuddy re-allocated House's parking space to her.
I should make clear that not all disabled people are so selfish that they think that only people with their flavour of impairment are genuine and everyone else is on the take; but sadly there are sufficient people so blinkered that they can't see someone else's perspective that it's a debate that'll go on for years to come. And BoJo just put his PomPoms on to encourage that battle. Presumably so disabled people will keep fighting amongst themselves rather than uniting and turning their energies against him around issues like all the tube accessibility upgrades he cancelled.
I see both sides of the debate: I use a wheelchair but I also walk a bit. Ordinarily when parking I need room behind my car to get my wheelchair out of the boot and assemble it. But there are occasions when I walk away from my car, like a couple of months ago when I had to go to the supermarket shortly after dislocating my shoulder. Walking is excruciatingly painful for every joint in my feet and legs - hence the usual wheelchair usage - but given the state my shoulder was in on that occasion, pushing my wheelchair would've hurt even more. To make the supermarket doable at all I needed to be able to park right by the door to minimise the distance walked.
However, even when I walk I'm still visibly disabled. I have an extremely pronounced limp, I'm of restricted growth and just one glance at my ankles will tell you that ankles aren't supposed to be shaped like that. But there are genuinely disabled people who are invisibly impaired who are no doubt who Mr J has in mind when he says:
the driver reverses into your spot and bounds out, whistling, remote-locking with a backwards squirt of electrons.
I don't remember him, he died when I was 2, but my granddad had an Orange Badge (this was long before they became Blue Badges in 2000) because his lung problems caused him to struggle to walk. Apparently for the first few steps after getting out of the car he looked quite sprightly. It was only after a few steps that the war veteran began struggling to breathe. But he would've been "looking normal" long enough to press the central locking button (if they'd had central locking in his lifetime) thus be the recipient of Johnson's suspicions.
Gardner and Johnson propose that wheelchair users get an extra badge and "special" bays that can't be used by non-wheelchair using disabled people. Would I need 2 badges, one for the days when I'm using my chair and one for the days when I'm not? Because I can walk a little bit would I be ineligible for the "W badge"? If so, then Gardner would be ineligible too; we've all seen him using a zimmer on the telly rather than his chair:
Boris also seems to have some trouble understanding who is actually eligible for a Blue Badge. He constantly refers to Blue Badge holders as "disabled drivers" and, yes, drivers do make up a significant number of BB users. But there are also a great number of BB holders who don't or can't drive. I think I was 5 when I got my first badge. The general minimum age has since been lowered to 2 but children younger than two can still get a badge if the child either:
- must always be accompanied by bulky medical equipment which cannot be carried around without great difficulty, or;
- needs to be kept near a vehicle at all times to get treatment for a condition when necessary
And obviously children that young can't drive! Then there are people who are old enough to drive but can't. My dad can't even push his wheelchair in a straight line at less than one mph, you wouldn't want him driving a vehicle that can do 100mph. Despite being driven everywhere by other people he still needs to park in Blue Badge bays because of the space needed to deploy the lift on his wheelchair accessible van. The argument of "but the driver could drop him off and then park the vehicle elsewhere," doesn't really work when someone takes as long to get out of the vehicle as my dad. Then of course there's people who can't be left alone while the driver parks the car somewhere else because they need constant assistance/supervision.
I do agree with Johnson that Blue Badge fraud is a huge problem. 6 years ago I blogged when I fell victim to Blue Badge theft for the first time. A year later I got a phone call from the police telling me that the badge had been found during a routine 'stop and search'. This was around about when I fell victim to Blue Badge theft for the second time. My car was broken into a third time later that year, but this was after my parents had bought me a Blue Badge lock for my birthday so the prospective thieves couldn't actually get the badge. I'd be thrilled if there was a clampdown on fraudulent BB use because if it were harder to get away with using a badge that isn't yours then I'd have to pay my insurance excess a little less often.
Parking can be incredibly difficult. Take my local Sainsbury's as an example. They have 7 Blue Badge bays on the surface and 296 regular bays in their underground car park. The Department for Transport recommends that at least 6% of the spaces for shopping be Blue Badge bays (plus one more BB bay for each disabled employee). Obviously my local supermarket falls far, far short of that 6%. I couldn't use the underground car park if I wanted to because there is no lift down to it. I can only shop in my nearest supermarket if one of the measly 7 bays is empty. And they rarely are. The store has such a half-arsed attitude to patrolling the bays; at any given time there are on average 3 or 4 bays occupied by cars not displaying badges and the remaining 3 or 4 bays are occupied by Blue Badge holders, whether the badge is being used legitimately or fraudulently. Which means that I usually drive into the car park, discover I can't park and take my custom to the Morrison's a little bit further away. I've tried queueing for a bay but this usually results in me being subjected to harassment because being only 31 people assume I can't actually be disabled until they see me in my wheelchair or limping.
If Sainsbury's put in the effort to clamp down on people parking in those pitiful 7 bays either without a Blue Badge or using a Blue Badge that was issued to someone not present then they'd get more custom from local disabled people. I know of other disabled people in Camden who don't bother with the store at all, they just go straight to supermarkets with adequate parking.
All Blue Badges have a photo of its owner on the back. The following are allowed to check Blue Badges to see if the person the badge is issued to is present:
- police officers
- traffic wardens
- local authority parking attendants
- civil enforcement officers
If you're asked to show your badge and refuse you can be subjected to a fine. I've been the holder of a badge (blue since 2000, orange before that) for 26 years and I've never, not even once, been asked to present it for inspection to prove that I'm the rightful owner. As I've said before, it's pretty obvious that I'm disabled when I get out of the car and either get in my wheelchair or limp away. But as I've also said already, you can't see my impairment whilst I'm still seated in the car. I recall one occasion when I parked on a single yellow line right in front of a traffic warden. His face lit up and he held his little computer thingum ready to issue a ticket. I put my Blue Badge and clock on the dashboard and he looked disappointed and walked away. He had a perfect opportunity to check that my badge was being used by the person it's issued to, but didn't bother.
The day before BoJo wrote his piece The Sunday Telegraph wrote that around half the Blue Badges currently in use are being used fraudulently. The fab Full Fact investigated but could neither confirm or deny the claim. Based on my own experience of Blue Badge theft the stat isn't surprising at all. After all, at one point there were 3 Blue Badges floating around with my name on; the one in my possession and the 2 that had been stolen from my car.
Johnson twisted the wording in his article to make the 50% stat mean something very different. What he said was:
According to yesterday’s Sunday Telegraph, ministers think that as many as half of all blue badges could be going to people who don’t need them.
It's the use of "going to" rather than "being used by" which utterly changes the meaning. Those two stolen badges of mine were being used fraudulently, but they weren't issued to someone that didn't need one, they were issued to me. This trick of language reiterates my earlier point that BoJo is trying to stir up tensions amongst disabled people to keep us divided.
The government keeps on with this rhetoric about how benefit reform is to "weed out the scroungers" whilst "protecting the most vulnerable". It's utter bull of course, they're planning to cut the DLA bill by 20% despite the fact that only 0.5% of claims are fraudulent. But there are many, many, disabled people who think that they'll be OK because they're genuinely disabled (despite there being a 1 in 5 chance they'll lose their DLA) and they constantly moan about the (almost non-existent) fakers. On Facebook and so on I've seen many people with my own impairment moaning about people that don't look disabled getting benefits because that's the kind of bile this government is encouraging. And with BoJo's ideologically driven article he's pushing that Tory agenda even further in encouraging wheelchair users to be (even more) hateful of ambulant disabled people, while paying almost no attention to the real problem: That of theft and fraudulent use. A problem that could be dramatically reduced if only traffic wardens used their powers to check badges were being rightfully used.
Johnson actually had the gall to say:
We are a warm-hearted species, and we like to confer benefits on as many people as possible,
Oh the irony...
29 March 2011
How I spent March 26th
Based on the TUC's access info I'd planned to meet a bunch of other WtBers in Savoy Street for 11am. This was supposed to be the gathering point for disabled people to have a "safe space" at the front of the march. I have brittle bones and I was with 2 people whose joints dislocate easily so the notion of a "safe" space where we wouldn't get smacked around was pretty important for us to protest, you know, safely.
Apparently no-one hit the TUC with a clue stick. The gathering point in Savoy Street wasn't actually at the front of the march. That would've been much too sensible. They had us gather in Savoy Street and then walk through the crowd to get to the front of the march:
The pink cross on the map shows where we gathered and the turquoise line shows how far we had to walk through a sea of people to get to that "safety". Moving through large crowds as a wheelchair user is not easy at the best of times. You're at arse height to everyone else and people don't tend to look down when they move around so they walk into you, trip over you and generally leave you feeling pretty bruised. Add banners, flags and other things that feel like weapons when people hit you with them and it's even worse.
So that the TUC had us gather some distance away and then walk through the crowd where we got a bit battered was a serious common sense fail. Between the lack of logic and getting smacked around I started off the march really quite pissed off.
This was us gathering in Savoy Street looking cheerful prior to our adventure through the crowd:
This was my view of people's backs as we were making our way through the crowd:
And it's worth noting that I took this photo at a point while walking through the crowd when I had enough room around me to actually do so! I spent a lot of the time using my arms to protect my face from people's backpacks and such.
Eventually we did make it to the "special" spot:
Thankfully once we'd made it through the crowd and the march set off there were no more such access fail dramas. As a result I began to really enjoy myself. The following 3 photos were taken by Emsy during the march:
We made it into Hyde Park at about 1pm (after what seemed like quite a long human traffic jam at Hyde Park Corner). Most of us quickly nipped to the loo and then headed off to Soho Square for the UK Uncut comedy at 2. I didn't want to stick around in Hyde Park for the rally mainly because Mr "I'm in favour of cutting disability benefits" Miliband was speaking. I feared my anger at him would cause me to regress a few evolutionary steps and start flinging faeces.
I've always been disabled, but until about 5 years ago I was perfectly "healthy"; I was free from illness. For many people there's a massive overlap between "illness" and "impairment", but there's also some differences too. So I've always had a rubbish skeleton but before I acquired a plethora of illnesses unrelated to my mobility impairment I used to do that working-for-a-living thing.
I used to be a stand-up comic. Yes, I'm aware of the irony of a wheelchair-using stand-up.
On Friday evening while I was in the supermarket shopping for more T-shirts to iron the WtB logo onto a thought occurred to me: "It's comedy against the cuts. I'm doing all this stuff about the cuts to disability benefits and I have a background in comedy; I should be speaking." So I emailed the organisers and asked if I could do a short set. The reply I got back was "the line up's pretty full, but we'll try and fit you in." But in the end (and with a little help from the lovely Johann) I ended up on the bill.
This photo by Chris Coltrane who compered the gig shows what the crowd looked like from where the acts were (and makes me happy that I ironed the WtB logo onto the back of my T-shirt):
That's Josie Long performing. She opened the show. The crowd had gotten much, much, bigger by the time I went on. This CiF piece estimates there were nearly 1000 people watching the show. I wouldn't have thought there were quite that many, but there were certainly a couple of hundred.
Against all the odds I had a brilliant gig. Look, people were smiling and laughing!
Photo by Noa Bodner
If you look you can even see Mark Thomas laughing along in that pic. I'm actually quite proud of that as he is, basically, the industry standard to which all political comedy gets compared.
I say "against all the odds" because by rights I really should have died on my arse. It's 3 and a half years since I last gigged due to becoming too ill to carry on with the comedy thang. Usually if you take a break from comedy for 3 and a half weeks you come back to find your timing's a little off and your rhythm's a bit out. And I wasn't doing tried and tested material, I was doing stuff that I'd written 12 hours earlier because I only had the idea to ask to go on about 18 hours before I ended up on "stage". I shouldn't have been "in shape" enough to deal with a heckler and turn around a joke that was a bit of a dud. OK, the heckler was very nice and friendly but it's still an interruption to your rhythm and you need to regain control and come out on top with a laugh.
Somehow it was all OK. Sure, it wasn't my best gig ever but given everything going against me it went so much better than I could ever possibly have dreamed of.
In the past I used to mix up jokes about disability issues and other stuff because if I'd only talked about disability I'd never have been able to hold the attention of a non-disabled audience. But given that Saturday was such a political gig and the reason I'd asked to speak was to talk about benefits I did a set solely about cuts to disability benefits. The only reaction I was really expecting was some polite applause when I finished from people thinking "aw, wasn't that nice the disabled woman telling us about benefits." I wasn't expecting such a warm response and to come off stage to have all my friends hug me at once. It was like being mauled by an octopus, but in a nice way.
I've always thought that comedy had a wonderful capacity for education, another reason I really wanted to speak. So I was chuffed to bits when I got home to read this in The Guardian's Live Blog about the day:
Noa, who snapped that pic of me in action, said:
I'm absolutely thrilled that I opened some people's eyes to what's going on for disabled people in the UK. There's a couple of extracts from my set in the Laugh Out London podcast.
I left Soho Square on such an adrenaline high. I'd taken a huge gamble in asking to do a set but it absolutely paid off. I would have skipped home if I could, you know, skip.
Then came the sadness. I love doing stand up so much. It's such an amazing feeling when you've got hundreds of people laughing at jokes you wrote, and Saturday was a reminder of just how thrilling it is. It's so painful that I'm not well enough to perform any more. I have good days and bad, Saturday was obviously a good day. But the sheer frequency of the bad days means that I can't book gigs more than 14 hours in advance because I can never guarantee that I'll be well enough to show up. It doesn't matter if you have a legitimate reason for not showing up to a gig, if you let a promoter down they're not going to book you again and will very possibly bad-mouth you to other promoters. I have this thing that I love doing, and Saturday reminded me that I'm actually reasonably good at it, but my health prevents me from pursuing it. And the government and tabloids really think I'd rather be stuck at home claiming benefits than out following my dreams?
The other element of sadness on Saturday night came from watching BBC News attributing the Black Bloc protesters smashing things up to UK Uncut. UK Uncut are a group of peaceful protesters who'd given me this wonderfully enjoyable afternoon of comedy in a park. And here these lovely people were being falsely accused of violence and vandalism. It was deeply disappointing.
Despite the day starting with access fail and ending in sadness I don't think I'll ever forget that chunk of a few hours in the middle where I had the best time I've had in years.
Cross-posted at Where's the Benefit?
Apparently no-one hit the TUC with a clue stick. The gathering point in Savoy Street wasn't actually at the front of the march. That would've been much too sensible. They had us gather in Savoy Street and then walk through the crowd to get to the front of the march:
The pink cross on the map shows where we gathered and the turquoise line shows how far we had to walk through a sea of people to get to that "safety". Moving through large crowds as a wheelchair user is not easy at the best of times. You're at arse height to everyone else and people don't tend to look down when they move around so they walk into you, trip over you and generally leave you feeling pretty bruised. Add banners, flags and other things that feel like weapons when people hit you with them and it's even worse.
So that the TUC had us gather some distance away and then walk through the crowd where we got a bit battered was a serious common sense fail. Between the lack of logic and getting smacked around I started off the march really quite pissed off.
This was us gathering in Savoy Street looking cheerful prior to our adventure through the crowd:
This was my view of people's backs as we were making our way through the crowd:
And it's worth noting that I took this photo at a point while walking through the crowd when I had enough room around me to actually do so! I spent a lot of the time using my arms to protect my face from people's backpacks and such.
Eventually we did make it to the "special" spot:
Thankfully once we'd made it through the crowd and the march set off there were no more such access fail dramas. As a result I began to really enjoy myself. The following 3 photos were taken by Emsy during the march:
>
We made it into Hyde Park at about 1pm (after what seemed like quite a long human traffic jam at Hyde Park Corner). Most of us quickly nipped to the loo and then headed off to Soho Square for the UK Uncut comedy at 2. I didn't want to stick around in Hyde Park for the rally mainly because Mr "I'm in favour of cutting disability benefits" Miliband was speaking. I feared my anger at him would cause me to regress a few evolutionary steps and start flinging faeces.
I've always been disabled, but until about 5 years ago I was perfectly "healthy"; I was free from illness. For many people there's a massive overlap between "illness" and "impairment", but there's also some differences too. So I've always had a rubbish skeleton but before I acquired a plethora of illnesses unrelated to my mobility impairment I used to do that working-for-a-living thing.
I used to be a stand-up comic. Yes, I'm aware of the irony of a wheelchair-using stand-up.
On Friday evening while I was in the supermarket shopping for more T-shirts to iron the WtB logo onto a thought occurred to me: "It's comedy against the cuts. I'm doing all this stuff about the cuts to disability benefits and I have a background in comedy; I should be speaking." So I emailed the organisers and asked if I could do a short set. The reply I got back was "the line up's pretty full, but we'll try and fit you in." But in the end (and with a little help from the lovely Johann) I ended up on the bill.
This photo by Chris Coltrane who compered the gig shows what the crowd looked like from where the acts were (and makes me happy that I ironed the WtB logo onto the back of my T-shirt):
That's Josie Long performing. She opened the show. The crowd had gotten much, much, bigger by the time I went on. This CiF piece estimates there were nearly 1000 people watching the show. I wouldn't have thought there were quite that many, but there were certainly a couple of hundred.
Against all the odds I had a brilliant gig. Look, people were smiling and laughing!
Photo by Noa Bodner
If you look you can even see Mark Thomas laughing along in that pic. I'm actually quite proud of that as he is, basically, the industry standard to which all political comedy gets compared.
I say "against all the odds" because by rights I really should have died on my arse. It's 3 and a half years since I last gigged due to becoming too ill to carry on with the comedy thang. Usually if you take a break from comedy for 3 and a half weeks you come back to find your timing's a little off and your rhythm's a bit out. And I wasn't doing tried and tested material, I was doing stuff that I'd written 12 hours earlier because I only had the idea to ask to go on about 18 hours before I ended up on "stage". I shouldn't have been "in shape" enough to deal with a heckler and turn around a joke that was a bit of a dud. OK, the heckler was very nice and friendly but it's still an interruption to your rhythm and you need to regain control and come out on top with a laugh.
Somehow it was all OK. Sure, it wasn't my best gig ever but given everything going against me it went so much better than I could ever possibly have dreamed of.
In the past I used to mix up jokes about disability issues and other stuff because if I'd only talked about disability I'd never have been able to hold the attention of a non-disabled audience. But given that Saturday was such a political gig and the reason I'd asked to speak was to talk about benefits I did a set solely about cuts to disability benefits. The only reaction I was really expecting was some polite applause when I finished from people thinking "aw, wasn't that nice the disabled woman telling us about benefits." I wasn't expecting such a warm response and to come off stage to have all my friends hug me at once. It was like being mauled by an octopus, but in a nice way.
I've always thought that comedy had a wonderful capacity for education, another reason I really wanted to speak. So I was chuffed to bits when I got home to read this in The Guardian's Live Blog about the day:
I just spoke to two teenagers aged 17 and 19 who have come from the comedy show in Soho Square, and they said that what they heard there made them think more than anything they have ever learnt at school. It's their first demonstration and when I asked why they came they said they realised that the demonstration is about more than just the UK.
They can understand the connection between the shops and the banks that people are targetting and the global situation that is effecting everyone. They've heard Mark Thomas and a disabled comedian and Johann Hari speak. For these teenagers the protest is absolutely opening their minds to a much wider picture.
Noa, who snapped that pic of me in action, said:
you rocked it woman, it was FUNNY and also very disturbing to learn a few of the stories you shared. many thanks and please keep healthy and get back on stage where you belong!
I'm absolutely thrilled that I opened some people's eyes to what's going on for disabled people in the UK. There's a couple of extracts from my set in the Laugh Out London podcast.
I left Soho Square on such an adrenaline high. I'd taken a huge gamble in asking to do a set but it absolutely paid off. I would have skipped home if I could, you know, skip.
Then came the sadness. I love doing stand up so much. It's such an amazing feeling when you've got hundreds of people laughing at jokes you wrote, and Saturday was a reminder of just how thrilling it is. It's so painful that I'm not well enough to perform any more. I have good days and bad, Saturday was obviously a good day. But the sheer frequency of the bad days means that I can't book gigs more than 14 hours in advance because I can never guarantee that I'll be well enough to show up. It doesn't matter if you have a legitimate reason for not showing up to a gig, if you let a promoter down they're not going to book you again and will very possibly bad-mouth you to other promoters. I have this thing that I love doing, and Saturday reminded me that I'm actually reasonably good at it, but my health prevents me from pursuing it. And the government and tabloids really think I'd rather be stuck at home claiming benefits than out following my dreams?
The other element of sadness on Saturday night came from watching BBC News attributing the Black Bloc protesters smashing things up to UK Uncut. UK Uncut are a group of peaceful protesters who'd given me this wonderfully enjoyable afternoon of comedy in a park. And here these lovely people were being falsely accused of violence and vandalism. It was deeply disappointing.
Despite the day starting with access fail and ending in sadness I don't think I'll ever forget that chunk of a few hours in the middle where I had the best time I've had in years.
Cross-posted at Where's the Benefit?
20 February 2011
♫...London calling? Yes, I was there too...♫
Life, the universe and everything tried to stop me from making it yesterday. From nose bleeds to parking nightmares, I had it all go wrong. I was tempted to just declare "fuck it" and go back to bed (having only managed 3 hours sleep. Not cos I was doing anything fun; I just laid there staring at the ceiling all night). And once I arrived at Congress House I spent most of the day on the verge of a temper tantrum and wishing I had spent the day sleeping.
The first time I heard anyone mention the word "disability" was during the "does the left lead online?" session at 3:30pm. I could've kissed Laurie Penny for bringing up the fact that Labour abolished Incapacity Benefit and talking about the online grassroots disability movement.
This was after I'd spent hours listening to members of other discriminated-against groups tell me that their group was the hardest hit of all.
Now, some of those groups are groups that I also belong to (women, LGBT, working class) so I absolutely understand that they/we are disproportionately hit when you compare us to straight, white, middle class men. But to claim that those groups are the hardest hit group is just not true.
For example; I listened to Dianne Abbott talk about how women and people from a minority ethnic background will be the hardest hit by the cuts. She talked about how people from those groups are more likely to be made redundant because they're more likely to work in the public and voluntary sectors. The same is true of disabled people and for the same reasons; employers in the public and third sectors are slightly less likely to be discriminatory.
But in addition to being likely to lose their jobs due to redundancies in the public sector and funding cuts to the voluntary sector, disabled employees in those sectors are likely to have to quit work due to Access to Work cut backs. Disabled people are also facing cuts to their care packages (which may result in having to give up work due to not having someone to get you out of bed of a morning!) and loss of their DLA.
Abbott also talked about how women and black and minority ethnic folks are more likely to live below the poverty line. This is also true for disabled people. But on top of the current levels of poverty disabled people are facing the prospect of having to pay even more towards their care, losing their incapacity benefit due to the brutal new assessment measures and losing their DLA. People already have to pay more on being disabled than they get back in the form of DLA.
I am not, at all, suggesting that I think that other minorities will not be hit hard. I'm just starting to get annoyed with non-disabled people claiming their group will be hit "hardest" when that is not the case because disabled people experience the same issues but with some extra crap on top.
The complete absence of disability issues from the panels infuriated me too. Why weren't Transport for All represented on the panel talking about transport? Why weren't DPAC, The Broken of Britain or Where's the Benefit represented on the panel about how we're not all in this together? That disabled people are not only being cruelly hit by the cuts but also excluded from discussions about the cuts reminds me of a post I wrote last year about us being the lowest of the low, and something I wrote more recently about how anti-cuts campaigners prefer books and trees to us.
As I said, the session about the left online improved my mood massively. Not only was there an acknowledgement that disabled people exist, I also had a good conversation afterwards with some UKUncutters (apparently my reputation is starting to precede me).
Then there was the final plenary session. I may be utterly furious with the Labour party for not only the recent history in which they scrapped IB and gave us ESA, but also their ongoing support for the coalition cuts to DLA; but I still intend to vote for Livingstone because the improvements he made to the accessibility of London's transport had such a positive impact on my life. However even he managed to piss me off more than somewhat with his closing speech: He talked about how equal London is in term of race, religion and sexual orientation, but how unequal London is in terms of class and wealth. I think it says something about the inequality of disabled people that we didn't even get a namecheck.
I would love to live in a progressive London. Somehow I don't see that happening any time soon when London's so-called progressives turn up to Progressive London denying the existence of around 18% of the population.
The first time I heard anyone mention the word "disability" was during the "does the left lead online?" session at 3:30pm. I could've kissed Laurie Penny for bringing up the fact that Labour abolished Incapacity Benefit and talking about the online grassroots disability movement.
This was after I'd spent hours listening to members of other discriminated-against groups tell me that their group was the hardest hit of all.
Now, some of those groups are groups that I also belong to (women, LGBT, working class) so I absolutely understand that they/we are disproportionately hit when you compare us to straight, white, middle class men. But to claim that those groups are the hardest hit group is just not true.
For example; I listened to Dianne Abbott talk about how women and people from a minority ethnic background will be the hardest hit by the cuts. She talked about how people from those groups are more likely to be made redundant because they're more likely to work in the public and voluntary sectors. The same is true of disabled people and for the same reasons; employers in the public and third sectors are slightly less likely to be discriminatory.
But in addition to being likely to lose their jobs due to redundancies in the public sector and funding cuts to the voluntary sector, disabled employees in those sectors are likely to have to quit work due to Access to Work cut backs. Disabled people are also facing cuts to their care packages (which may result in having to give up work due to not having someone to get you out of bed of a morning!) and loss of their DLA.
Abbott also talked about how women and black and minority ethnic folks are more likely to live below the poverty line. This is also true for disabled people. But on top of the current levels of poverty disabled people are facing the prospect of having to pay even more towards their care, losing their incapacity benefit due to the brutal new assessment measures and losing their DLA. People already have to pay more on being disabled than they get back in the form of DLA.
I am not, at all, suggesting that I think that other minorities will not be hit hard. I'm just starting to get annoyed with non-disabled people claiming their group will be hit "hardest" when that is not the case because disabled people experience the same issues but with some extra crap on top.
The complete absence of disability issues from the panels infuriated me too. Why weren't Transport for All represented on the panel talking about transport? Why weren't DPAC, The Broken of Britain or Where's the Benefit represented on the panel about how we're not all in this together? That disabled people are not only being cruelly hit by the cuts but also excluded from discussions about the cuts reminds me of a post I wrote last year about us being the lowest of the low, and something I wrote more recently about how anti-cuts campaigners prefer books and trees to us.
As I said, the session about the left online improved my mood massively. Not only was there an acknowledgement that disabled people exist, I also had a good conversation afterwards with some UKUncutters (apparently my reputation is starting to precede me).
Then there was the final plenary session. I may be utterly furious with the Labour party for not only the recent history in which they scrapped IB and gave us ESA, but also their ongoing support for the coalition cuts to DLA; but I still intend to vote for Livingstone because the improvements he made to the accessibility of London's transport had such a positive impact on my life. However even he managed to piss me off more than somewhat with his closing speech: He talked about how equal London is in term of race, religion and sexual orientation, but how unequal London is in terms of class and wealth. I think it says something about the inequality of disabled people that we didn't even get a namecheck.
I would love to live in a progressive London. Somehow I don't see that happening any time soon when London's so-called progressives turn up to Progressive London denying the existence of around 18% of the population.
