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Archives for February 2008

I have a tin cup ... and plan to use it!

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Elizabeth McClung | 04:22 UK time, Friday, 29 February 2008

Could someone explain again why my sitting in a wheelchair behind a tin cup is wrong? I ask because though I have been working with a “disability job centre” since Nov. 07, I haven’t yet gotten one job offer. I know my case manager wants me to find the “right job” and said, “I don’t think answering phones would be YOU.” Well, since I slur when I speak, I would find that quite funny honestly; lots of Monty Python style humor possible there. I told her, yes, find me a job, any job and then I maybe I will believe you can find me the “right” job.

It all came to me when I was wheeling uphill in my manual wheelchair. I use a manual though I have to stop (a lot) because I am getting weaker. And I thought, “If I just had a good mug or cup to put down every time I have to stop and take a break, I could make some decent change.” I mean, I wouldn’t even have to look pathetic, because the wheezing I do when I stop tends to make people cross the street (note to self: look LESS pathetic when you want spare change). I even started looking at my different mugs to put into the rack next to my oxygen under the chair. But then I remembered that I wasn’t ‘supposed’ to put down a cup where people can give money. I just couldn’t remember why.

Here we have Gordon Brown, who with his visual impairment is a PWD as Prime Minister, but he seems to have it in for all PWD’s. And now he requires them to justify why THEY aren’t Prime Minister (besides that only about 4 people have been Prime Minister in the last couple decades). It seems being part of the human experience (illness, disability, and impairment) and sharing that point of view, or making a difference with others isn’t enough anymore; it is all about the MONEY. And quite honestly, I have needs too (Manga and pixie sticks full of sugar). I am running out of things to sell and friends to call up for a loan who haven’t found out yet I am in a wheelchair.

I think the “NO” on the cup thing was something about dignity or stereotypes. Which since I am still in the meat grinder of medical tests, and disability “training” seems a joke (I had to go to a hospital department with a poster titled ‘Nuclear Radiation and YOU’ before they jacked me up and told me to stay away from pregnant women). Because while I CAN get the government to pay me to train to be an undertaker (seriously, they mentioned it as an option in the orientation), I can’t get a job sitting and pointing people in the direction of the nearest lavatory. Plus everyone from friends, family, doctors and the people “helping” me find a job have strongly mentioned; Since I am so sick and considered terminal, should I be looking for a job at all?

Well, “boo ha” to them, I say. And I went and applied to the library staff all on my own, two weeks before the management, refusing to negotiate with the library worker’s union have now shut ALL libraries in my city (that wasn’t a joke…no libraries). So now, the one place to get FREE books and films is gone. And while I may be ill and wheezy, I still like sweets and a movie which brings me back to…..the tin cup. I have no pride! To get a room I can afford with my partner on a trip, we told the hotel I would drag myself through the door (since the only room we can afford has too narrow a door for a wheelchair).

Dignity? What if, while I am taking a breather, I am honest and assure people the money would only be spent on “manga, pain killers and zombie films.”

As for stereotypes: on Monday I went into the police station at 11:00 pm with a hacksaw asking to be arrested. So no, I’m not too worried about those either. I actually went because everyone I know with my level of disability who has gone through the “disability job centre” ends up shoved into volunteer work, usually at a disability organization. I was getting the same twitches about a “planned life” like when your mother talks about how great it would be if you were a nurse during secondary school and you find out she’s signed you up as a hospital ward volunteer during the summer vacation. Solution: get arrested as you can’t volunteer with a police record (In full disclosure: I was actually just returning the hacksaw, which I found outside the police station – that Emergency Response Team guy with the gun interpreted THAT scenario completely wrong….and I am guessing may have seen the horror film SAW).

Turns out that a) it is really hard to GET arrested if you don’t have a type of personality where you want to hit people b) “intent to vandalize” isn’t a real crime and c) it is a LOT harder getting out of police station than getting in; particularly when they need to “assess your medical condition” and determine if it “causes self destructive tendencies.” So, knowing now what I have done for you all to improve the stereotypes of PWD’s, especially us females in wheelchairs, I ask again, ‘Why is putting a cup down while getting a breather so bad?’ Is it just because it “isn’t done?” Or because I might get enough to go see the cinema at the day rate, and feel absolutely NO GUILT whatsoever?

• Visit Screw Bronze!

I am me

Jemma Brown | 22:59 UK time, Thursday, 28 February 2008

I am not my disability!

I have had a seriously bad day with labels and boxes; I am well and truly frustrated by it.

Today someone (that should no better) said that me and another visually impaired person, where really alike, we had the same vision, we used the same font size for our work and in fact the biggest difference between us was our age gap, she is 30 years older than me!

The over riding theme of this conversation was that we where the same, have the same needs, the same abilities, the same vision; we don’t

Why do people have to shove me in a box based purely on my disability? I am an individual I am not the same as anyone else, and I can safely say that nobody will ever have the same vision as me; for starters my vision varies on daily basis (sometimes it can change within the space of a few minutes).

Basically anyone that says that me and another visually impaired person have the same needs, abilities, and vision is talking absolute B******s!

Then this evening someone said to me “…oh I no I’ve got a friend like you” Like me what? A student? A teenager? No what he really meant was that he has a VI friend, that is probably our only similarity so that makes us alike.

I am unique, I am me, no one can change the way I am, just because I am visually impaired does not make me the same as other people. It does not mean I will instantly be friends with every visually impaired person I meet; trust me there are some VI people I really don’t get on with.

I am fed up of people making stereotypical assumptions, based purely on the amount they think I can see, I am fed up of people thinking they understand my disability, they know what it is like, they don’t and never will.

• Visit Diary of a Monkey

One Million Bucks for a 10ft Ramp

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Wheelchair Dancer Wheelchair Dancer | 07:56 UK time, Thursday, 28 February 2008

Oh. No. It's a historic building. We never thought disabled people would need to go THERE and do THAT.

Well, surprise, surprise.This is from the San Francisco Chronicle.

"Thanks to a maze of bureaucratic indecision and historic restrictions, taxpayers may shell out $100,000 per foot to make the Board of Supervisors president's perch in the historic chambers accessible to the disabled.
...

"It's crazy," admits Susan Mizner, director of the mayor's Office on Disability. "But this is just the price of doing business in a historic building."

Supervisor Jake McGoldrick said Tuesday that the issue went to the heart of liberal guilt that often drives the city's decision making. He also choked on the price tag, and asked that the board take some more time to come up with an alternative, like maybe just getting rid of the president's elevated seat.

The root of the problem dates back to when City Hall got a $300 million makeover in the 1990s that made just about every hallway, bathroom and office accessible to the disabled. The exception was the board president's podium, which is reachable only for someone who can climb the five steps from the chamber floor.

The understanding was that the room would eventually be made fully accessible. But no one worried about the podium until 2004 when Supervisor Michela Alioto-Pier, who uses a wheelchair, joined the board."

Well. Lookee here. Another danged selfish wheelchair user. Exploiting liberal guilt on her own power trip. I mean, really. It's bad enough that cripples run for (and get into) public office, do they really need to get onto the raised podium?

Instead of blaming the team who did the remodel or the people who let the details slide never assuming that a wheelchair user would desire access to the podium, bloggers and journalists are blaming Ms. Alioto-Pier for wanting the same things that her colleagues have. She wants to get on the podium and will exploit liberal guilt in order to be able to do so. It's a power trip on her part.

It's true that being able to access the raised podium is not absolutely critical to Ms. Alioto-Pier's ability to do her job; it doesn't prevent her from working or being effective. But in my view that's not good enough. If you are going to be accessible, you should be accessible. Using the podium seat thingie is a symbolic part of the job. It represents the authority (and power, I suppose) of city supervisors. It's one of those things. If it matters -- i.e., if it is important for supervisors to display their authority in this way, then it should be available to ALL city supervisors -- and if it doesn't matter then, the whole thing can be removed. From my point of view, it's an all or nothing thing.

Access is not a product of liberal guilt. I can barely write that without feeling annoyed. Liberal guilt doesn't elect disabled people to office. Liberal guilt doesn't make them effective supervisors. It's really one of those awful things where no one plans for a disabled person to show up, and then, when she does, there's an "oops" moment. I'm tired of oops. Oops does not facilitate equality: planning does.

City Hall is a beautiful historic building. BUT it is a municipal building -- and the claim that historic preservation should come before access does nothing for me. City Hall is where we HAVE to go to transact our civic responsibilities. It should be accessible to all citizens, in all ways. Accessibility enables historicity here. City Hall is a building that should be able to accommodate and reflect the changes in American culture. We have moved from a world where disabled people did not play a large part in civic life to one where they can hold office. City Hall, the symbol of San Francisco, should reflect that history. Historicity is not necessarily about holding a frozen moment suspended in the past. Historicity also incorporates the present. AND this present requires access for a disabled city supervisor.

I will never hold public office, but when I roll into the beautiful lobby, I feel like I am a part of that city history. I have danced in the open hall space there in the name of accessibility and disability pride. I have attended the wedding of a friend at City Hall. The building is part of my personal history with San Francisco -- and I am part of its history, too.

That, in my view, is the argument for inclusion and access: disabled people are part of the city's past, present, and future. The building that symbolizes the city should represent all of its citizens. It should allow all of its citizens to participate in city life. Then, and only then, will City Hall be a historic building.

• Visit the website of the ahistorical, presently-focused Wheelchair Dancer

A new way to keep up with Ouch's blog

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Vaughan | 10:52 UK time, Wednesday, 27 February 2008

The new BBC homepage launched today, all bright and whizzy-like. One of the big new features is a panel promoting the BBC's vast array of blogs - and that includes Ouch's very own weblog. Hurrah!

So if you want another way to be regularly informed of all our latest blog entries, click the Edit panel of the Blogs panel, select the box against Ouch! and, as if by magic, you'll get links to the last three entries from your favourite disability weblog right there on the BBC homepage. Handy, eh?

Living vicariously

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Giraffe-a-licious | 10:46 UK time, Wednesday, 27 February 2008

I am fortunate to be able to say that my little sister is also my best friend. We’re pretty close in age (she’s just 20 months younger than me) and we get along like a house on fire. We’ve spent A LOT of time together over the years, probably more than your average siblings. That’s due in part to my M.E. – no doubt if I hadn’t been ill then I’d have gone off to university at 18 and whilst I imagine we’d always have been close, not living in the same house would definitely have limited our friendship to more normal sibling levels. My little sis was also unable to go to uni. At the age of 16 she went through a couple of years of severe depression and had to drop out of school. However, she’s now fully recovered and is getting out into the world and showing it what she’s made of. Interestingly though it has posed some new difficulties for me, not least the temptation for me to start living vicariously through her.

As I’ve said, we’re very close and that means that although we are very different people we share a lot of the same interests and therefore a lot of the same ambitions, the vast majority of which are just too difficult for me to achieve. Travelling; working; going to music concerts or sporting events; she gets to do all these things whilst I sit at home waiting to hear all about it. Don’t misunderstand me; I don’t begrudge her these experiences in any way. She is my best friend and I love to hear about all her exciting adventures, but the danger is that I start to try and live my ambitions through her and that is incredibly unhealthy for both of us! It means that I can sometimes inadvertently push my dreams and aspirations onto her when she may not share them. It can also become a problem when she’s able to go out and do something that I would desperately have loved to do. By and large I’ve managed to stop comparing my life to that of other people’s over the years but it’s sometimes tough when that person is your best friend and sister.

That said I wouldn’t change our relationship for the world. Goodness knows how I’d have managed without her over the years. Friends that stick by you through thick and thin are rare and valuable. To have one that you get to live with? Well that’s just priceless. (Apologies to Mastercard for the blatant ripping off of their slogan!)

• Visit Ponderings and Ruminations

Blind leading the blind!

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Jemma Brown | 23:56 UK time, Sunday, 24 February 2008

Me and my boyfriend Dave are bringing whole new meaning to this phrase, it comes with being an all VI couple, so far we have however not had any major disasters.

There have been a few accidental head buts and a very scary moment involving my hair and his eyebrow bar, but so far no one has ended up in casualty, this is good.

When out and about we help each other out, Dave can see less than me (most of the time)but is quite frankly awesome at navigating his local area, so much so that he doesn’t use a cane, in this instance I do, because I’m a scardy wuss!

Whenever only one of us has are cane out it causes immense confusion to all the normies out there, They all think Dave is fully sighted (sometimes even when his cane is on display) and are surprised to hear that he is the blindest one and I am only partially sighted. So far the most confused people we have come across have been taxi drivers.

There are occasions when we do both get our canes out; this has the full effect of terrifying all around us! It comes in really handy that Dave is left handed and I am right it means we can walk (or skip) along holding hands and both use are long canes to there full terrifying potential! Another thing that adds to the fear factor of other pedestrians is that we walk quite fast so they really do flee for there lives!

When we walk holding hands and canes it also causes huge amounts of hilarity for are friends who laugh extensively whilst saying things like “it really is the blind leading the blind” and you no what they are right!

• Visit Diary of a Monkey

Road to Beijing

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Giraffe-a-licious | 15:23 UK time, Friday, 22 February 2008

Wednesday night saw the BBC’s Inside Sport programme head off to Beijing to report on various aspects of the forthcoming Olympics and Paralympics. Included in the show was a report by Tanni Grey Thompson focussing on the issues facing Paralympians in particular e.g. disabled access and the attitudes of the general Chinese population. Despite the report being far too short to effectively cover these issues (an hour long documentary may only have scratched the surface of them, let alone a 5-minute slot in a magazine programme) it still managed to make some interesting and valid points.

There are an estimated 83 million people with disabilities in China and they are largely shut away, out of sight and out of mind. As a result the ‘normal’ population are unfamiliar with disabilities. Tanni Grey Thompson related a story from a couple of years ago when she visited Beijing; a passer-by actually came over and poked her to see if she was real!

I’m aware that there has been a lot of discussion lately about the pros and cons of disability sport. I’d like to make it clear that I am purely pro-sport. Whether disability sport or not, it is always fascinating to watch competition, particularly on the Olympic/Paralympic stage when we are treated to seeing the best in the world. What hadn’t occurred to me until Inside Sport’s report was how such a huge festival of disability sport could change the way that disability is perceived in China. Whilst sport will (and should) be front and centre during those weeks of competition, disability will also share the spotlight. A whole country of people, largely ignorant of so many disabilities, will be forced to change their views and see disability in a new light. Or as a fellow blogger might say – the ability in disability.

I have to admit that I’m not at all convinced by the IOC’s decision to give Beijing the games, for a myriad of reasons. However, it's said that every Olympics leaves behind some sort of legacy. Let’s hope that Beijing 2008 is remembered as the games that saw China bring its attitude towards disability into the 21st century.

To watch Inside Sport’s Beijing special
To read Tanni Grey Thompson’s report

• Visit Ponderings and Ruminations

Dreaming

Dave Hingsburger | 19:46 UK time, Wednesday, 20 February 2008

Well, it happened. It's been almost three years now since I've become a wheelchair user. At first I used the wheelchair only in public but walked at home and work. Then, as I wanted to fully participate in my homelife, I began using the chair in the kitchen and to get around in the bathroom. Finally a few weeks ago, I began using my chair at work too. My mobility has increased and I am now much more able to be part of the social world of work - but that last bastion of walking was a hard one to give way. I know, I know, 'disability pride' but allow me a relapse into the 'old me' every now and then.

So as the disability claimed more of my waking life I was fascinated to note that in my dreams, I not only walked, I ran. (I'm fat, always been fat, fat people should never run - I never ran.) My dreams have allowed me physical abilities that I never had. I flew. Over the heads of others. I saw through buildings. While not being superman, at least I was super human. I don't tend to nightmares - so dreams always seemed like a pleasant escape into a world wherein I had greater skill, greater ability and greater control. Rah Dreams.

But last night was different.

Vastly different.

I awoke from a vivid dream wherein I was in a wheelchair for the whole dream. I didn't fly. I didn't have supernatural skills. I just rolled about as things happened. (Forget the dream content, I bore when others tell me their night visions and I refuse to bore others with mine.) My dream wheelchair was much like my real chair. It needed to be pushed and it turns on a dime. The me in the chair in the dream was like me in all dreams - the center of the activity, the center of that world. But in a chair.

Sitting thinking about the fact that the wheelchair had entered my dream world. Had become such a part of me that I couldn't, even in my dream state, be without it. Like dreaming of myself without legs. Without hands. I realized that 'my self' had embraced 'my difference' and that the transition was smooth. One day flying, next day rolling ... move along.

Dreaming disabled ... at night.

Now I have to imagine dreaming disabled ... awake.

There is a challenge I think I'm up to ...

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US Big Brother in autism criticism

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Vaughan | 12:15 UK time, Wednesday, 20 February 2008

The subject of differences between acceptable and unacceptable disability language in English-speaking countries has come up a number of times on Ouch's blog, as well as on our messageboard, over the years. Now, according to Digital Spy, a US autism advocacy group called Autism United has asked American TV network CBS to officially apologise for a comment made by one of the contestants in the current run of the Stateside version of Big Brother.

And the biggest irony of this story? The contestant in question claims that he works for an autism foundation.

Adam Jasinski, who is 29 years old and hails from Florida, was talking on the show about how he wanted to win and scoop the big cash prize so that he could build a hair salon where "retards can get it together and get their hair done". Oh, that's nice then - he was only thinking about disabled people's need for a fashionable hair style. Bless!

But Adam didn't stop there. When another contestant challenged him and said he shouldn't use that term, he replied: "Disabled kids. I can call them whatever I want. I work with them all day, OK?" Um, Adam - surely you should know better then, shouldn't you?

Autism United have been trying to contact CBS to make an official complaint, but in the meantime the network has released a statement calling Jasinski's statement "offensive". Yes, and I wonder what the disabled kids he worked with made of it?

Incidentally, Adam might like to know that a few years ago, Ouch readers from far and wide - including America, presumably - voted "retard" as their most offensive disability-related word.

Ah, Ha, Ha, Stayin' Alive, Stayin' Alive

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Wheelchair Dancer Wheelchair Dancer | 06:10 UK time, Tuesday, 19 February 2008

Touring brings out the peculiarities in you. Anxiety. Worry. Fear. Stress. They gang up on you and heighten the little idiosyncrasies. I find myself freaking.

Over critical things like -- does the hotel have a refrigerator AND a microwave (essential for food, heating pads, and ice -- essential, given the hours we keep). Then, there's the "are all of the pieces of my costumes here, what about my chair on the plane, have I packed enough shampoo, inner tubes AND screws?"

I begin to notice my satisfaction at inconsequential details; my bag will be lighter on the way back (or to the next place) because I will have eaten some of the food and used the shampoo, conditioner, and face cream. I feel happy about throwing things away. Old face wipes finished? Yay. Now, onto the glory of the new packet -- yes, it's the same brand, but it is a new pack. It's hard to describe the joy derived from, gasp, a new tube of toothpaste, and, incidentally, the pleasure of tossing the old. Nothing like brushing your teeth at the beginning of a new day with new toothpaste, especially when that day has also had new conditioner! You just KNOW that the performance will be great.

Our schedules mean that we don't always get to explore the city for the local independent cafe or even the nearest Starbucks. I'm picky about my coffee; I won't drink the hotel stuff and good coffee isn't readily available in many of the places we visit. I bring my own: 1lb of coffee, plus filter, and/or French press (cafetiere) travel mug. I heat the water on the stove (if we have one), nuke it if not -- I won't use the room coffee machine. I bring (dark) chocolate-covered Venezuelan espresso beans in case the water is bad or I don't have time or .... Better safe than sorry.

All of this pales beside the work that goes into clothing -- how often will we work outside performance in costume, how sweaty -- can I wear it more than once? How many tops, pants, tights; are washing machines available? Do I have time to use them? Then, there's the body care. Oh yes, body care. Although I have my doctor's office on speed dial, it's often hard to find a 24 hour pharmacy. I pack remnants of every prescription I have had in the past year into my "crack pack;" I pack my current prescriptions. I make sure I will have access to ice; I pack my heating pads. And then there's the daily routines, performed even more thoroughly on performance days -- as if more thorough care and more rigorous stretching augur a good performance. Though, come to think of it, the practice of care does focus my mind on my body and that focus prepares me for performance -- I suppose it does work.

Gven all this, the hardest thing is remembering that I am more than the some of dancer schedule and practices. Somewhere, under all the preparation and stress, is the person I am back home.

• Visit the home base of the touringWheelchair Dancer

Hi-ho, hi-ho, to medical exam I go...

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Giraffe-a-licious | 11:16 UK time, Monday, 18 February 2008

Well, my medical examination is done and dusted. Phew. That is unless they deny me my incapacity benefit and I have to go to appeal. Gah. But I am in an optimistic mood today and shall not dwell on such thoughts.

I have to say I was rather thrown by the doctor that interviewed me. It’s my own fault for buying into stereotypes. I was expecting a rather old and curmudgeonly retired GP. Instead I found myself talking with a pleasant, young (and not altogether unattractive) South African doc! Not that it did anything to calm my nerves. Boy was I tense. It’s just so difficult to ensure that you get all the necessary information across. When most people get nervous their voices get higher, mine gets lower. I’ve already got a pretty deep voice for a girl, so whilst talking to the nice doctor I sounded as though I’d swallowed a bucket of gravel!

I took my mum in with me, purely for observational purposes. I placed her under a tight gag order which she only breached on a couple of genuinely helpful occasions.

It is a little frustrating that the doctor doesn’t have any part to play in the actual decision making process. I got the impression that he really understood the problems I face and that I really would be working if I could. All he can do is write his report and hope that those with the power to declare ‘yea’ or ‘nay’ can kind of get to know me through his remarks. That said a friend of mine once had such an assessment with a doc that seemed nice as pie but then turned in an exceptionally nasty report. As always it’s just going to be a case of wait and see. I’m on the edge of my seat…!

• Visit Ponderings and Ruminations

Belfast mayor in disability slip-up

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Vaughan | 10:30 UK time, Friday, 15 February 2008

Ladies and gentlemen, pray silence for the Lord Mayor of Belfast, Jim Rodgers.

Mr Rodgers is close to becoming something of an unfortunate legend in disability circles. In October last year, he temporarily disabled a local council worker, leaving her with back injuries, after attempting to jump over her during a photoshoot. Oh, and for reasons best known to only the event organisers at the Belfast Botanic Gardens, she was dressed as a tomato at the time.

This led to a BBC News headline the likes of which we're never likely to see again: Leapfrogging mayor bruises tomato. It brings a mayonnaise tear to the eye, it really does. What a s(al)ad story. Ahem.

And now, Ouch columnist Liz Main has sent me another story about Mr Rodgers, this time from the Belfast Telegraph, with the instruction that I should "be nice to the man". As if I'm ever nasty to people I write about on Ouch's blog! Never!

So what has the Lord Mayor been up to? Well, he was on live radio discussion on Wednesday, talking about the poor condition of pavements in Belfast's city centre. At one point, he said that the foothpaths were difficult for disabled people to negotiate, as well as for "human beings". Oops. Oh dear. Oh dear oh dear oh dear.

Mr Rodgers was, however, very sorry. He corrected his slip-up at the time, and "[I] made it quite clear that the footpaths were problems for disabled people, able-bodied people and also those with buggies. It was a genuine slip of the tongue made during an early morning telephone call ... There was absolutely no offence intended." He unreservedly apologised, and asked that anyone who had been offended by his remarks should contact him personally.

See? I can be nice. I really can. And if you're reading this, Lord Mayor, this particular "human being" certainly doesn't have any hard feelings, I promise you. All forgiven.

From sub-human to able bodied: Behavior Training for PWD's

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Elizabeth McClung | 05:05 UK time, Thursday, 14 February 2008

It had been a night of sleeplessness and pain: my limbs in rebellion. I was going to be late for my hour morning meeting with Triumph, the Vocational Service for those with disabilities. So I called to tell them. I was told there was a policy, 15 minutes late and meetings were cancelled. There were other people to consider; this could not be discussed. I was hung up on.

Triumph is government subcontracted disability employment aid, part of their job is to educate employers explaining that some people with disabilities will have to wait for a caregiver, will sometimes be late. But at Triumph itself they never asked if it was a medical issue.

So I was going to get there now, naked or otherwise. I made it, knowing the manual wheeling over that hill would cost me later, breezed by the front desk straight to my case manager and asked to file an official complaint of record. It was explained to me that Triumph’s timing policy was internally called “Behavior Training” to try and “teach” the disabled the importance of being on time. There were no exceptions for medical or other emergencies; if a disabled “client” was late by 15 minutes, they were “Behavior Trained” by denial of access. Though the case manager they were to meet with would be paid for the full hour.

I attempted to explain that any time an organization decided to engage in covert “behavior training” of people in their care, it says a great deal about how they see them, or don’t see them as equal individuals. My partner, who works as a manager in a Government Ministry is used to people coming late because traffic, auto accidents, sick dependants, and any number of events occur which make this a workplace reality. When an organization which has the medical file, and knows that they have clients who are dependant on others for dressing, care, or have rapid health variables makes a no tolerance policy as a way of “training” these individuals, what are they training them to be exactly? Able bodied. Are you having an insulin attack which will delay you? That kind of behavior will receive negative reinforcement.

I explained that this was discrimination on the basis of disability; to know and be paid to assist people with disabilities into the workplace and then deny them services because of their disability. I said by their decisions, they held their “clients” to a different standard than themselves. I told them to stop treating us as ‘sub-humans.’

The Triumph Site Manager came in, wanted to know if there was a problem. I told her bluntly this time was allocated for me, my job hunting and I had no time right now to speak with her. If she wished to speak with me, please make an appointment….and don’t be late. I closed the door, forcing her out of the room. She was visibly upset (to make an understatement). And yet, I had followed Triumph’s own model? Was she in need of more “Behavior Training?”

I turned back and again told the case manager to make the official complaint. She pushed the paper across to me and put the pen in my hand. I looked at her. “You are aware I have limited hand function,” I stated, waited and then began the laborious task. It took me over 20 minutes to write the ten lines. The case manager, after watching a time offered to take dictation. I said, “You chose the venue.”

She apologized at the end of the meeting, telling me that she had pushed the paper and pen across because “I had made her angry.”

My case manager is an employed and paid activist for “creating opportunities for people with disabilities” which includes both employment and independent living. She knew my medical history, had a file of it, had met with me several times, and had even worked to procure a voice software program for me BECAUSE of the limitations of my hands. She worked for Triumph, an organization whose states on their web page “our goal is to be highly accessible to clients” yet pushed a pen and complaint sheet across to force me to painfully struggle to write because “I had made her angry.”

There is something so tempting, so easy in humiliating someone with a disability, particularly when you know their limitations. Take away their crutches, their wheelchair and watch them crawl. Refuse to make allowances, refuse accessibility, to accommodate because you can. Even when you are paid to help and understand them, in the end they aren’t like you and if they make you angry, just tell them they have to write it themselves, no not type…write it, and watch them painfully toil. I don’t know if it gives satisfaction, or a feeling of superiority to watch someone strain as they make a complaint that Triumph is treating People with Disabilities as sub-humans.

It is easy when you are paid to assist, to withdraw that, and no one will know. No one will know you used the medical information a PWD gave you to hurt them, to try and break their spirit, or their pride, or what you consider willfulness, or what you see as arrogance. You weren’t even “Just following orders” like the person I was complaining about, you did this because you could and you wanted to. Though I struggled it wasn’t me who lost my dignity, nor my humanity, but you.

I wonder how often someone “makes you angry.”

We like each other, we were a good match, she said she could talk to me for “ages.” Yet her intent was to make me suffer, and to watch it. She felt the anger. She felt the intent and then acted upon it, confident that no one would stop her. Like her organization, Triumph, the method she chose was one where I could not match ‘able bodied’ actions.

I do fear the acts that people make when I anger them, when I show them hypocrisy and treat them as they have treated me. But I would not replicate that, even to an able bodied person who did it to me. I don’t have the stomach for it.

• Visit Screw Bronze!

Should I stay at home or should I go?

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Donimo | 00:38 UK time, Wednesday, 13 February 2008

This evening, my girlfriend is reading as part of a guest readers series for our local gay and lesbian newspaper, Xtra West. I always go to her readings, not only because I’m a supportive partner and a big fan of her work, but also because I like to hear other authors and be out in the scene. Unfortunately, I’m really conflicted about going to this event and it doesn’t involve not having the right outfit (known in my circles as a “fashion crisis”) or feeling anti-social because of being in pain. I feel that if I go I will be selling out my wheelchair using brothers and sisters and I’ll basically suck as an ally.

Here’s the thing: the venue is not wheelchair accessible. I have pain and can’t walk far, but I can do stairs and tonight there will be quite a few of them. When I found out that the venue is not accessible, I emailed the organizer and said how really pathetic it is that in 2008, queers with disabilities are still having to fight for basic access to events that are supposed to be for the whole community. For those not in the gay world, let me just tell you that for years and years we’ve been very vocal about making sure that events are accessible. I first started writing letters and making calls around this issue back in 1988. I know than non-gay activists have been working very hard for many years as well, but I think we tend to expect more from gay organizations because they have been so intensely politicized. Gays and lesbians have been working on issues of “access” (in terms of access to human rights) for many decades now. So, for a large gay newspaper to arrange a reading series at a little café that sits atop a whole mess of stairs is just bloody wrong. Hence, my angry email.

To his credit, the organizer called me right away to talk about my email. That’s about where my praise for him ends. He said he didn’t think about making it accessible. He said it’s really hard to find a space that has everything they want and this place is licensed and has a piano. Imagine that! No crips in site, but plenty of beer and tinkling ivories. I appreciate ambiance as much or more than the next person, but where are their priorities? I told him I wasn’t sure I wanted to attend given than a friend of mine who uses a chair could not be there. His answer to that? He and the owner of the café would be willing to carry anyone up the stairs who needed it. Sigh. Can you understand the depth of my anger and disbelief? I told him that though I couldn’t speak directly for people who use wheelchairs, I could reasonably assert –given my years in the disability community– that no wheelchair user feels that it is very dignified to be carried into an event. I think the organizer thought he was being very chivalrous. I mean, he had taken the time to call the café owner before calling me. Too bad he didn’t call a disability organization and ask about access issues and sensitivity. And then there’s the plain reality that two fellows can’t freaking carry a heavy electric chair and its occupant up some old stairs on the outside of a building. Who could even insure themselves for that? This was his solution?

Obviously, I educated the fellow and said that the next reading in the series shouldn’t be at this venue. He said they had an agreement with the café. A verbal agreement as compelling perhaps as that piano?

My partner wrote to the newspaper and I will write another letter to the editor. We won’t just let this slide. But what about tonight? Do I go hear her read or do I send another note to the organizers saying that I couldn’t do it and won’t support this event? Am I being a jerk and not taking enough of a stand against ableism? Honestly, I'm really not certain. What I am certain of is that I won’t be silent. It’s 2008 and, yes,we still need to raise our voices and claim our rights.

• Visit Chronic Holiday and Body of Work

As time goes by

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Giraffe-a-licious | 13:09 UK time, Monday, 11 February 2008

Interestingly I didn’t get an envelope. I got a phone call. I’ve been summoned. I thought that I’d be stressed out about the whole thing but actually I’m strangely calm. I’m a good few years older than the last time I went for a DWP medical examination and a lot more confident in myself. I know why I can’t work; I just need to explain it clearly to the appointed Doc. What’s got me most frustrated is that I’ve got to take the time to go and do it! Ridiculous I know. In all likelihood it will only take a couple of hours in total. But in reality it takes up a whole day.

I never have enough time. My M.E. (I’m never sure whether to refer to it as ‘my’ or ‘the’. I’m going with ‘my’. I think it helps to indicate that every sufferer experience different symptoms and restrictions) means that I’m pretty much limited to one activity each day. Whether it’s a trip to the shops; a hair-cut; or an hour of volunteering somewhere, I usually have to abide by that rule. The rate at which an average week fills up is absurd, especially when you take into account that I need a couple of rest days in there somewhere.

Time becomes a strange entity with this type of disability. Rarely does it pass at a normal speed. It’s either flying by with disconcerting speed, leaving me unable to fit in everything that I want to do. Or it’s passing at the pace of a particularly wearisome snail. At which times I’m usually pretty ill and want nothing more than to fast forward through the next fortnight. I read in the paper last week that scientists think that they may be getting closer to time travel! A time machine could definitely be a useful little gadget but I’d still prefer a teleporting device. Just picture it. No more transport nightmares or long, exhausting journeys. If all these brains can’t come up with a cure for this illness, then the least they can do is build me a Star Trek-esque ‘beam me up’ machine!

• Visit Ponderings and Ruminations

Ambition

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Giraffe-a-licious | 14:11 UK time, Tuesday, 5 February 2008

I was surprised the other day when a friend of mine used one of those silly Facebook applications to describe me as ambitious. It’s one of those things that I thought been kicked out of me by my illness. Pre-M.E. I was quite a clever kid (probably a bit of an annoying know-it-all, to tell the truth). My ambitions were the usual: good GCSEs, good A-levels, good degree and a good job. I didn’t want to be a high-flyer. All I wanted was a nice job that used my talents to their full potential. Although I guess that could quite easily be interpreted as ambition!

Anyhow, funnily enough things didn’t go to plan. Now aged 23 I have the grand total of 3 GCSEs and 1 A-level, each of them hard-earned but also more valuable to me than they would be to most other people. So what of my ambitions? Well these days they are rather small. Not small to me, but small to the outside world. The bottom line is that all I want to do is be able to support myself and live independently; to have an office job where there is little pressure but a great feeling of achievement. I suppose it’s why I get in such a stew about benefits forms and medical examinations. They question my desire to work, when there is almost nothing in the world that I want more than the ability to do so. I thrive on feeling useful and languish otherwise.

Lately I’ve embarked on this writing malarkey, although that’s more out of necessity than ambition! Essentially it’s just a job that I can do from home. Although whether it will ever become a paying job is another matter!

So are ambitions generally tempered by disability? In my case I’d be tempted to say yes, but I’ve no doubt that there are many people who are more ambitious because of their disabilities. Or perhaps our ambitions change but not the enthusiasm in which we pursue them? Any thoughts Ouchers?

• Visit Ponderings and Ruminations

Not a shaggy assistance dog story

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Vaughan | 11:22 UK time, Tuesday, 5 February 2008

I'm going to start a new mission on this here Ouch blog. A mission to bring you interesting little factettes that come my way during the average day in the our office.

For instance, we're already 36 days into this year, but I bet you didn't know that 2008 is Year of the Assistance Dog, did you? Well, you do now. Yes, during the next 12 months (well, 11 months now, because I've only just discovered this), it's everybody's duty to mark the contribution made by support dogs, hearing dogs, guide dogs and, in fact, any other furry four-legged friends who help disabled people with their daily lives.

Not only that, but you can say thank you for their contribution just by sending a letter! Yes, really! Today, the Royal Mail launches a series of stamps to celebrate the roles performed by working dogs in the UK. You can see pictures of the stamps on BBC News, including one of a guide dog, and another of an assistance dog that is, very appropriately, posting a letter.

Right, can I have a puppy now?! Please?!

Staying Active

lilwatchergirl | 19:48 UK time, Sunday, 3 February 2008

My, what a year 2008 is already turning out to be for disabled people. The British Government condemns two-thirds of Incapacity Benefit claimants as fraudulent. Another mother with mental health problems tries and fails to fight against a decision to remove her child from her. It begins to become more and more apparent that social care provision in this country is inadequate for many disabled people’s needs. A writer for a national newspaper encourages – maybe ironically, maybe not – his readers to commit acts of violence against wheelchair users. And national newspapers finally begin to highlight the dramatic and terrifying rise in hate crime, over the last couple of years, against disabled people in this country. All that from just the last week or so.

I wonder if I can be forgiven for wanting to give up and leave the country at the moment. It’s not my usual response to such news. I’m an activist – if a rather rubbish one – and when I hear things like this, I usually want to do something. Even if it’s not much. Writing a letter or contributing ideas to an anti-discrimination forum can have a powerful effects: it can inspire others and lead to group action, which is always more effective than campaigning alone, and it can help me to stop feeling like a victim and start acting like a human being. So why am I finding all of these news stories so overwhelming now, and why does it suddenly feel like ‘resistance is futile’?

The clue might be in the word. Activism. You can’t complain about poor services, congratulate for good ones, push for changes, raise consciousness or challenge inequality without doing something. That can be a lot to contemplate, when you’re disabled. I’m tired out by just living life at the moment. Over the past few months I’ve started working, acquired a new diagnosis (with everything that goes along with that), acquired a head injury by falling backwards off a bus ramp in a powerchair, got used to a manual wheelchair, applied for a uni course, experienced a ‘flare’, seen quite a few nightmarish doctors and consultants and psychologists (how patronising can they be?), had three physiotherapy assessments which all led to absolutely nothing, been signed off sick for a few weeks, and returned to work again… And that’s with a condition that causes, among other things, fatigue. Fun.

Anyway. Tired. So I avoid doing things. And suddenly we’re into a spiral of guilt and inaction that helps no one. I have at least three little ‘actions’ I want to take about some of the things I’ve mentioned above, and I’m not doing them because the mere thought is exhausting.

This is why I think that, perhaps for disabled people more than for any other minority or rights-focused group, it’s really key that we work together. That doesn’t necessarily mean doing all the same things at the same time, though. It can mean telling our stories and keeping others informed about the action we’re taking, and not getting too bogged down in whether it’s *enough* or not. The most useful 'action stories' I read are at places like the Ouch! Talk messageboard and the forums at butyoudontlooksick.com, where the tale of one person’s complaint that led to a small change can be just as important as the recounting of a landmark DDA court case. Some might dismiss this storytelling as nothing but ranting or chattering. I wouldn’t. Action inspired through discussion is powerful, even if that action goes on behind the scenes, on a small scale, quietly and without any fuss.

Tell me about the action you’ve taken that has led to change for disabled people – on any scale, local or national. You never know whose activism you might inspire. You might even persuade me to get out of bed and write a few letters. Now that would be a triumph.

• Visit Through Myself and Back Again, where I may or may not be doing useful things this week.

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