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Archives for August 2007

Organisation, what's that then?

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Jemma Brown | 16:42 UK time, Friday, 31 August 2007

Well anyone that knows me will no that I’m the most disorganised person on the planet.

My mum is convinced I have dyspraxia, dyslexia and dyscalculia, which would explain it, but as I haven’t been tested for any of these, and I’m not even sure if its possible to be visually impaired and have an accurate idea of whether I am or not.

So anyway you have just established that I’m incredibly disorganised, well my latest moment of complete disorganisation has struck and I’m really, really, really, really annoyed that I was this disorganised.

Despite writing down in my diary and calendar as well as seeing, and reading this article right here on ouch I completely forgot about the liberty festival!

How?????

But ouch blog readers, it gets far worse, as a result of completely forgetting about its existence I now don’t have enough money to go.

I was really looking forward to this years festival, it’s the first year where I feel I could actually be old enough to get there on my own and check it out, and I’m sure it will be amazing and I was so determined that I was going to go this year, and I stuffed it up!

Ouchers I’m really annoyed, I’m going to have to wait a whole year to have my first disability festival experience.

GGGGGRRRRRRRRR!

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Repair

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Wheelchair Dancer Wheelchair Dancer | 08:27 UK time, Friday, 31 August 2007

Why is it this hard? I mean, I understand it is relatively hard to do. I certainly can't do it. So, I have total respect for the people who do it. I just want to be able to get access to the people who do it.

In the SF Bay Area, it has become increasingly harder to get a simple chair repair. Like many out here, I prefer a small funky place in the East Bay -- weirdly, not in Berkeley. This used to be a drop-in kinda place; you'd go, they'd put air in your tyres, tighten things up here and there, and, in the worst case, they'd bring out the soldering iron, some lateral thinking, and some wacky creativity. You could hang out and listen to their bad music for hours. They'd order parts if they needed them, but they very often had something on hand that would do. Repairs were cheap-ish, and most problems were pretty easily solved with a dose of inspiration and willingness. Sometimes, the can-do approach had its disadvantages. On one occasion, it took me a while to figure out that they'd put my camber tube on upside down (the wheels weren't rolling easily ...).

Anyway, favourite place has recently been bought by a large medical conglomerate. This profit-making undertaking has decided that the old ways were inefficient. And, yes, they truly were. BUT the cost of that has been high: no more drop-in appointments AND the biggest: they won't work on any chairs that weren't purchased there. This is a nightmare. Lots of people move to the Bay Area -- I am one of them. What are we supposed to do? They are also not working on older chair models; the parts aren't made any more, so it is expensive to have a technician concoct a handy-dandy individualized solution. One of West Coast's dancers users an old E and J with drive belts. That thing moves faster than many of the newer chairs and it just rockets around the stage. But it is over 30 years old... What are we supposed to do? The community (which was up in arms) offered to do a fundraiser in support of favourite place, but the old owners were too deeply in debt, and the new didn't care.

Which brings me to my current issue. In the past month, I have needed a replacement cushion (easy -- got it on the web), 4 screws (web), and a new camber tube. My old tube somehow got so badly worn that the wheels slipped every time I pushed with force or pushed up. It wasn't so bad, but it was kind of eerie. So, when our new dancer said to try some aggressive camber (I only have 2 degrees), I jumped at the chance. Neat. Now, I need a whole new sling seat replacement; the shaft that holds the sling got bent, because the screws had worked loose -- I lost two more and stripped some in an attempt to repair it myself. So, a new shaft, screws, washers, and bottom upholstery. ... What to do?

Favourite place's treachery wouldn't be so bad except that this has also become the policy of the only other competent repair place in Berkeley -- they didn't want to be overwhelmed with people wanting nontrivial tasks. I was willing to drive 45 miles to favourite place because my local place has the reputation of being filled with crooks. No, there's nothing in between. My local bike shops will fix a flat or squirt some oil, but they don't want to be sued for working on my chair. I think they could get sued for screwing up someone's bike, but appreciate that they are trained for bikes and not for wheelchairs.

So, I am stuck. I suck at repair. The only engineers I know are software engineers (and they wouldn't dream of dealing with a hardware issue -- nor would I want them to). My health insurance has basically given up on paying for repair -- dance seems to trash chairs faster than the insurance thinks regular wheeling would. True enough. True enough. Insurance companies like the idea of wheelchair sports, but dance ... well, that's just silly.


Time to build a relationship with the crooks. Not sure what direction they are supposed to be crooked in, though. Perhaps they are Robin Hoods. But I don't know. No one defrauds Medicare in order to help the end-user, do they?

OOOOO. One silly difference between chairs and prosthetics. My health insurance treats a wheelchair as a piece of durable medical equipment. I need a prescription for it and for any upgrade, alteration in the equipment but if it goes wrong, I can get it repaired without a prescription. By contrast, one of our prosthetic-using dancers needs a prescription to get her prosthetics repaired. Even though, prosthetics are durable medical equipment, it seems that the maintenance of her legs is handled as if it were simply a case of maintenance of flesh legs. Cool, but probably an accounting quirk rather than an intended principle.

• Visit the engineeringly-confused Wheelchair Dancer


Lazy-Day Linkage

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Zephyr | 02:06 UK time, Friday, 31 August 2007

Thanks to my anxiety and insomnia, I've spent today stuck between waking and sleeping. It took me forever to get to sleep last night, and I woke early and couldn't get back to sleep. Now I feel completely useless. I'm too tired to be very productive, but too alert to sleep. It's a read-and-watch-TV kind of day.

I have been killing time by surfing the Disability Blogosphere, and have some interesting links to pass on. Enjoy.

Check out Kara's Place To Breathe and Believe for the Labor Day Blog Against the Telethon. For those who don't know, Jerry Lewis has been raising money for Muscular Dystrophy for decades by using destructive stereotypes of disability. He exploits young children as poster children, making them objects of pity, in order to raise money for a cure. While I personally have no problem with raising money for Muscular Dystrophy awareness and aid, I think it's wrong to campaign solely for a cure, especially by manipulating people's guilt and pity in order to get to their wallets. Join Kara and her friends on September 3rd and blog against the Jerry Lewis Telethon, or check out her site on Labor Day.

Lene from the Seated View always strikes me as a fairly even-tempered person, but when she rants, she does it very well. In One of These Things is Not Like the Others, she bitches about her wheelchair malfunctioning, and how she's tired of being treated like a second-class citizen because of her disability.

She also links to this post from Big Noise. As I read Diagnosis: Murder, I was outraged to hear the story of a disabled man being murdered by a doctor who wanted to harvest his kidneys. Are you kidding me? It sounds like something out of a sci-fi horror novel but it is unfortunately all too true. As I said in my blog, if there's any kind of organized protest or letter-writing campaign, let me know, 'cause I'm in.

• Visit Arthritic Young Thing
*May contain adult content*

My Cane Gets Me Phone Numbers!

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Zephyr | 09:09 UK time, Wednesday, 29 August 2007

I've been bellyaching for a while because I don't have any devotees. It often seems like every other disabled person but me has a story about being pursued by an over-eager devotee. Most PWDs would rather ride their wheelchairs over broken glass than date a devotee. I, on the other hand, am completely curious about the phenomenon. As someone who respects fetishes, and has one or two herself, I'm completely open to the idea of meeting, and possibly dating, a devotee.

For those of you not in the know, a devotee is a person who is attracted to people with disabilities, often to the point of fetishism. Disability becomes a turn-on, instead of a turn-off. According to Wikipedia, for every disability there is a devotee somewhere! I find it hard to believe that someone would fetishize arthritis, but it's a weird and wonderful world.

Even if I'm not interested in a particular devotee, I'd love to pick his (I think most devs are male) brains about why he's so turned on my crip chicks. Is it because they perceive us as helpless, passive and dependent, in need of a big strong man to take care of us? Do they admire us for being brave and heroic? Are they just aroused because seeing a girl with a cane or scooter is different, much like a girl who wears glasses or has pink hair? Do they get off on the 'freak' factor, as if dating us is taboo and forbidden? The amateur sexologist within me really wants to know!

I'm wondering now if I have been attracting a few potential devotees lately. In the last month, I've had three men ask me if I need help crossing the road at an intersection. It's always men, in their 20s and 30s. I always say no thanks, but maybe I should ask them why they ask. Do I look like I need the help, or do they have a secret agenda?

The prize goes to the man who tried to pick me up at the pharmacy by complimenting my cane. He segued from "Nice cane. Where did you get it?" to talking about his business, and how he's in town for a week and would love some company. I was amazed at his chutzpah and smoothness. I have to say, if people are going to use my cane to pick me up, I'm all for it. Instead of people refusing to date me because of my disability, people are using my disability as an opening to flirt with me! That's more like it!

• Visit Arthritic Young Thing
*May contain adult content*

Stubborn Statistics

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Mark | 01:13 UK time, Wednesday, 29 August 2007

Here in the States, we just commemorated the seventeenth anniversary of the passage of the Americans with Disabilities Act (ADA). The ADA is a major piece of federal legislation designed to guarantee basic civil rights to people with disabilities. One of the primary intents of the ADA is to improve access to employment opportunities. Most employers are required to provide reasonable accommodations to job candidates and employees with disabilities. But nearly two decades later, the ADA's vision of people with disabilities working alongside their able-bodied peers remains largely unrealized. The national unemployment rate hovers consistently between 65% and 70%.

In the time I've been working in the disability policy field, I've heard several explanations for the persistently high unemployment of people with disabilities. One explanation is the structure of our publicly financed health care system for people with disabilities: Medicaid. When Medicaid was established in the 1960s, legislators didn't consider the possibility that people with disabilities might actually want to work. As a result, disincentives exist in Medicaid that have forced people with disabilities to choose between earning an income and maintaining their health coverage. This is slowly beginning to change. Many states, including Minnesota, have implemented buy-in programs that allow working people with disabilities to purchase Medicaid coverage. I participate in such a program myself and it's made a tremendous difference in my own life. But time and again, I hear that people with disabilities refrain from seeking employment because they're afraid it will jeopardize their health care coverage.

I'm curious: is access to health care a barrier to employment for people with disabilities in the UK? How about other parts of the world? I would think that the availability of universal health care would make this a moot point, but perhaps I'm wrong. Or are there other barriers that are more prevalent, like employer bias, access to transportation or...something else?

In the coming years, developed countries will see millions of their citizens retire and leave the workforce. People with disabilities could be a crucial labor market for employers, but there seems to be precious little recognition of that at the moment.

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The silent life of disability: Twenty (possibly) offensive questions

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Elizabeth McClung | 06:53 UK time, Tuesday, 28 August 2007

This post came to me while my face was pressed up against my toilet’s ceramic underside. I probably should have thought “Ewwww!” or “Must clean more!” but instead my thought was “Three more feet!”

Today’s Topic: the silent life of disability. No, not those parts of your disability you freely share but those ‘other’ moments, incidents, feelings and aspects of your condition/s which are too painful, private or socially unacceptable.

I had woken from sleep with no balance and little limb control. I woke because I needed to pee. I had wormed and flopped this far because I wanted to pee. But there was still three more feet. My home support worker stood in the hall looking down at me. I asked her if any of my support bars were within arms reach. She said no and wandered off (odd, odd woman). Later she would stare down at me and ask if I believed in God.

Why hadn’t someone warned me this moment might arise when I first became ill (That “Evangelical home worker between you and bladder relief” moment)? I did go book hunting after all, to find the Strum und Drang of disability, instead finding only accessibility guides and autobiographies looking back years later after the author had reached some inner peace and/or accomplishment. To me, useless. Where was the book; My First Year in a Wheelchair or Down the Rabbit Hole: from first symptom to diagnosis? So I went blog hunting and found lots on being disabled, living disabled or disability issues but almost nothing on “Why do I have explosive diarrhea when I am weak, trembling and having problems with balance?” or “foot dragging and its effect on your toenails.” Where was that intimate information on all the mundane, icky-but-oh-so-frustrating stuff that makes a life (or a disabled life).

You see, this isn’t my first disability; it’s just the first I haven’t been able to hide. In looking back, I realized what almost all those book writers, bloggers and people with disabilities (including myself) had been doing: exercising the freedom to choose how to present yourself, your life and your disability (even while the disability might keep stealing away other choices). Because being brutally open about ALL of your life will have people running away faster than woodland creatures from a forest fire. But oh how I owe those few who revealed.

Kay Redfield Jamison’s book, An Unquiet Mind, helped me understand I was not alone as a person with manic depression who struggled in a professional field where the question “Have you ever been committed against your will?” still showed up on application forms and in interviews. There are parts of my manic depression/bipolar disorder, my current physical illness and my other disabilities that I simply cannot share with anyone except maybe a partner, doctor or care worker. Cannot. Too painful, too shameful, too personal, too humiliating, too much to give away for what I had to pay. That’s my silent life. So yeah, surprise! I have a mental illness; feel free to throw in a “running with scissors” joke, or call someone a ‘loony’ and then glace over to me; others have.

Rolling out of my apartment demonstrates what I am prepared to share with the world (though if you know about a wheelchair cloaking device; contact me now!). Yes, as people with disabilities we are connected through our frustrations, our being belittled, demeaned, looked over, undervalued and our medical and social common experiences. We are also connected because maybe there are some feelings and experiences we can’t share, even to someone with the same condition.

No, we are not our disability. But our disability is more than what is seen, and it often affects and alters some of those little details that other people (or we) take for granted. Those are the details where I begin to understand a condition. Dirty Butter over at Day by Day with Parkinson’s and Peripheral Neuropathy has been talking in detail about Parkinson’s and bowel problems, specifically constipation. Parkinson’s attacks the autonomic nervous system which may cause the intestinal tract to weaken and operate slower (ergo, constipation). Dirty Butter says at one point, “I have lost track of how many colonoscopies and endoscopies we have had.” Lost track? I asked different people how many colonoscopies they would need before they would ‘lose track.’ The average was 20. Now, I may only understand 1% of what it is like to have Parkinson’s, but in reading about colonoscopies or having to drink one gallon of the “slippery, salty” GoLYTELY, I have SOME idea that Parkinson’s is more than just Michael J Fox disappearing to do voice acting.

The sad truth is that until people have some clearer understanding of the different conditions and disabilities, they will continue to treat us all the same: “The disabled” (also known as “those who really dislike being called disabled”). And as much as I’m trying, that “they” probably includes me. What I do know is that a disability turns what for others would be the most surreal, horrific, painful, socially unacceptable or biological base into the mundane. During my pre-medication days, my partner’s response to seeing me naked atop a roof was a sigh and “Not again. Didn’t we do this Monday?” Buckle up kiddies, you left ‘normsville’ two stops back.

Okay, I’m hoping this won’t come off as insensitive as the people who ask of Linda and I, “So who plays the guy?” but here are some of the questions I would like to understand:

1) If pregnancy is sneezing out a watermelon, what does an MS cramp or spasm feel like?

2) Did a diagnosis of Chronic Fatigue make you feel better or worse?

3) Why are programs with the word “integration” in them only for people with disabilities?

4) In detail, what would the morning routine of a C-6 quadriplegic from waking to being ready to leave the house be like?

5) What do sight impaired people do with junk mail?

6) What’s the one question you never want to hear about your condition again?

7) How long after an amputation can you feel a phantom limb? Can you move the phantom limb.

8) How often do people say they believe your disability but then say or do things which show they think you “just might be lazy?”

9) If you could tell the rest of the population to change one habit (which would help your life), what would it be?

10) Does EVERY spinal cord injury person go through an “I’ll walk again” period?

11) How long does it take to “get used” to ALS/MND? And do you begin to hate your body?

12) Why do doctors never seem to agree?

13) If you read lips, what is the hardest accent to read?

14) What has your disability made mundane to you but makes other people’s eyes get all freaked out?

15) If you have CP, how will I know when you being sarcastic or making fun of me?

16) Did you ever try to make a deal with God about your condition?

17) What is the best thing about having autism/aspersers? (No, I’m not asking you to go to Vegas with me.)

18) How did growing up with a disability make your family different?

19) Why is the only UK TV license disability discount for sight impairment? And why is it such a small discount?

20) Is there some point when random strangers will stop telling you to “have hope”, “a new cure is coming” or “keep thinking positive?”

I apologize if you are offended; I’m thankful if you would answer. Maybe if I “get it” there will only be 5.99999 billion people left to be educated. What? That doesn’t encourage you?

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Making a New Dance

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Wheelchair Dancer Wheelchair Dancer | 18:11 UK time, Sunday, 26 August 2007

Ooof! It's Sunday. It's 2.26 AM PDT. It must be time to blog.

We've been making new work. The process of creation can be drama filled. We've had tears and shouting; we've had snide remarks that would bring up blisters on concrete. There's even been stomping out in the middle of a rehearsal. That kind of thing is usually the choreographer; the dancers don't get to have tantrums. Even without the emotional extremes, making work can be stressful. Sometimes, it can be hard to see a piece among the fragments, and we wander around thoroughly lost for weeks at a time. "Wheel across the stage 10 times. And again, please. Again. Again. Can I see that again?" Sometimes, however, being in process (that's what we call it) can be smooth and sweet. Like honey. (Apologies to Diana Krall).

The most recent process goes under the sweet category.

This has very little to do with the dancers of West Coast -- we're what/who we are -- and everything to do with the skill and facility of the choreographer. The person we are working with at the moment understands bodies, wheels, prosthetics. And I mean really understands them. She also has insight into who we are as people, dancers, and performers. I don't want to describe the piece because it's not yet finished, but allow me for a second to talk about one sequence of movement that I get to make.

I start facing the audience reacting to my partner, but slide slowly into my own world. My hands slip onto the wheels, and I pull backwards the length and width of the stage; I make 2 sides of a square. In that dreamy world, I get to create a feeling of sensuality, but I don't use my body. Deliberately, there's very little body movement until the very end. The lyrical, sensual feel I am aiming for comes almost entirely from the movement of the wheels. I don't have all that long to create this feeling; I make 7 slow pulls back to the scrim (the gauzy material at the backdrop of the stage) and 13 increasingly faster, shorter pulls across the width. 20 pulls in all. And, though I say it myself, those are 20 way seductive pulls.

In the process of figuring out how to move in this way, I started ruminating on how anyone learns to move this way. I mean, how does a disabled person learn to dance? I grew up with the idea that dance was a thing for the ethereal. All those unusually skinny women; the men with unusually muscly legs. I didn't know any dancers, though I worked in an orchestra pit for several years. I certainly didn't think I would ever dance. I admired the dancers of Fame (that dates me), rolled my eyes at Flashdance, loved Strictly Ballroom, and wept my way through Billy Elliott. But none of these films really dealt with disability. Confession.... I have since rewatched the first season of Fame, and there WAS a storyline about the tragedy of a dancer with MS who was going to dance until she couldn't...

Any road, I am fascinated by the dance/movement experiences of other disabled people. I have to say, though, the experiences of these OUCHers is more than a little discouraging: Check out Christina Papamichel's yoga knots, and Kate Ansell's salsa.

Off-putting, no? Their experiences seem to be part of a larger pattern for would-be disabled movers. Ideally, you would just show up to an integrated setting, and people would know how to make it happen for you. Practically, however, you usually have to integrate the setting yourself. No one really knows how to help. You have to figure out your own adaptations. You spend many hours trying to make your body do stuff that it simply won't. In an ideal world, the instructor would begin with the natural movement of your body.

I learned to dance using both approaches to the body. West Coast teaches classes and workshops that allow people to bring their bodies and learn to move with them. In the beginner classes, we concentrate on asking people to move with intention, to learn to initiate, to find their bodies, experiment with qualities, dynamics, shapes, etc; we're hoping that people will get a sense of their individual movement vocabularies. In the second half of the class, we think about how dancers move across the floor; dancers experiment with group work and the initial practices of partnering. In these classes, we demonstrate the principle, but we don't ask the dancers to copy the exact movement. We're not asking each dancer to master a named technique (Horton, Graham, Duncan, Cecchetti, Russian, RAD); we're beginning to explore the individual beauty and movement potential of each body.

I also study wheelchair ballet and Horton technique in New York. This approach takes classical ballet and Horton techniques apart, looks for the line, the shape, the intention, and rhythm of each step and develops an equivalent wheelchair adaptation. In this world, I get to worry about my arabesque line or the strength of my laterals. Regardless of approach, I think the key to my positive experience comes from the fact that my primary learning situations are with disabled teachers. I have had some amazing (good and bad amazing) experiences going to mainstream dance classes. In New York, I work at a particular studio where there is another wheelchair user. I just roll in; most of the teachers are game, and some have actually gained understanding of wheelchair movement. In San Francisco, when I integrated a class, they called the security guard (full story here). When I asked about the accessibility of another studio, I was told they were near both major highways....

If I thought about it at all, I sort of expected the process of making a work to be rather like the process by which an orchestra makes or learns a new piece. Essentially, the composer comes in with a virtually complete score, tries it out on the orchestra, makes revisions, tweaks, and then everyone gets down to the process of learning it. I was prepared for a choreographer to come in ready to teach everyone their part. Our job, as I saw it, would be memorizing sequences of movement. Imagine my surprise when I learned that only some choreographers are like that. Most come in with an idea -- they might have a phrase of movement that they teach to us -- but the dance as a whole is created over the course of many weeks. Can you do this? Try that? Wait a second, what happens if you ...

That degree of familiarity and ease is complicated by the presence of disability. Because most choreographers are non-disabled, they don't have much of a clue about what to do with us. Two powerchair users, two manual chair users? What are the differences? With legs? Without legs? Which legs? The better ones prepare by watching some video or from coming to one of our performances. In some cases, we have to do a lot of teaching. I remember one day I was explaining that wheelchairs simply didn't roll sideways. Obvious when you think about it, but that particular choreographer had never really thought about it. Some people get it right away. They ask us to make a phrase they can see how we move. They can work with that; it gives them a sense of the possibilities. They then go away and dream up movement. Some of the choreographers listen to and respond to our ideas about the movement. Some don't. When we get to have some input, however, the process is amazing. For example, I suggested having some body movement come late in the sequence of pulls, and the choreographer defined what, where, and when. I came up with several versions of the sensual pull; she picked one, refined it, and we worked on it again.

On Friday, we got our first look at the new piece as a whole. We know the order of the sections; there will be time for one of our dancers to remove her prosthetics before she goes on without them. We also came to see how the parts work together, but there's a couple of moments for me and my partner where the floor pattern doesn't quite work. We're frantically tearing across the stage with whip turns and suddenly two other dancers are in the way. My partner pulls a basketball sidestep; I skid to a stop. We'll work on that next week -- timing is everything. It's interesting to see how small things resonate across the three sections, but I am more intrigued by the differences in relationships. The obvious is never obvious with this choreographer -- that's why she is so compelling.

It's Sunday morning; it's 4.28, and writing this has brought back that movement. I'm downstairs on the couch (shared with cats) and yet I can still feel the wheels sliding through my fingers. It's deeply affecting. But it's also really annoying. That pull is in my body, the same way that ditty gets in your mind. You start singing it over and over again; it pops up and before you know it, you're singing it. I've felt the urge to do that pull on the street, in last night's restaurant, on the ferry... It just slips out when I am not looking.

• Visit a now thoroughly caffeinated Wheelchair Dancer

Breaking The Ice

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Mark | 02:37 UK time, Friday, 24 August 2007

Sorry I'm late to the party. I would have arrived sooner, but the Internet is a big place and I got a bit distracted on my way here. You would not believe the stuff that's lurking in the darkened alleys of the Web. I had absolutely no idea that goats were that limber.

But I digress. I'm Mark Siegel and I've been blogging at The 19th Floor for the past five years. All of my regular readers have become bored with me, which is why I'm incredibly grateful for this BBC gig. This should bring me a whole slew of new readers, who in time will also become incredibly bored with me.

I'm an attorney living in Minneapolis, Minnesota. In case you don't know where that is, try to summon up a mental image of the United States. You see that big part in the middle? Minnesota is on the northern edge of that midsection, just south of Canada and just east of, well, not much. I'm originally from Wisconsin. That won't mean much if you're not from around here. The two states have occasional border skirmishes, but mostly we keep to ourselves and invent truly awful jokes about one another's football teams.

I work full-time for a department of state government, where I focus on policies related to disability and employment. I have a neuromuscular condition called spinal muscular atrophy, which means I have very little use of my voluntary muscles. I use a wheelchair and breathe with the assistance of a ventilator. When I'm not compulsively blogging, I'm at the movies, reading something from my towering backpile of books and magazines, or otherwise indulging my pop culture/geek obsessions.

You'll find out more about me in the coming weeks, but if you feel like indulging your inner stalker, here's a magazine write-up that a friend of mine did about me a few years ago. He describes me much better than I ever could.

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Wheels, Wheels

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Wheelchair Dancer Wheelchair Dancer | 05:41 UK time, Thursday, 23 August 2007

One of the first things people learn about me is that I like shoes. I mean, I REALLY like shoes. I mean, I have shoes. Way too many of them to count -- and way too many excuses to be credible. And, as I was juggling my dance and street chairs, I began to wonder.... Are wheelchairs like shoes -- at least one for every occasion? I mean, how many does a woman need?

1. Your basic everyday ultralight manual.

2. The powerchair-- cuz a manual isn't always good for the body or the terrain. And powerchair soccer rocks.

3. The sporty basketball chair -- cuz team games are fun -- Murderball, anyone?

4. The tennis chair -- who wouldn't wanna play tennis?

5. The handcycle/racing chair -- cuz racing up hills and seeing the beach or riding with a friend is fun.

6. Your rugged wheel, knobby tired chair -- cuz, well, you want the option of off-road wheeling/backcountry hiking and camping.

7. Your showerchair -- cuz you probably stink after all that exercise.

8. Your dress chair -- cuz when you get invited to the ball, you don't want to get stuck in a pumpkin coach.

9. The dance chair -- getting down is fun.

10. The powerassist (for the manual) -- cuz after a night of hard partying, you can't lift a powerchair into a taxi and public transit can be sketchy. You don't want to be done for drink-driving...

11. The travel chair -- cuz your butt is too precious to put on an airline aisle chair.

12. The water/snow skiing chair -- cuz you can ride the water/slopes with the best.

13. Your beach chair -- cuz you like to wade and burn on the beach with the rest.

14. The tank chair -- cuz you like to release a little aggression now and then -- yeah, really. Google it.

15. Your hacked segway -- cuz who isn't a techno-geek these days?


OK. Some of this could be reduced to a question of wheels, as opposed to a new frame every time. But the cost would be unimaginable.... and anyway, who has space?


Visit the well-shod, excessively-chaired, but clearly not well-enough heeled Wheelchair Dancer

I HATE MOBILITY SCOOTERS!!!

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Jemma Brown | 00:08 UK time, Wednesday, 22 August 2007

For my latest post on here I have decided to step on the crippled toes of ouch’s very own disability bitch (check her stuff out here, I recommend it), so first a warning.

If you are old or a user of mobility scooter you will not enjoy reading my post I am warning you now!

Ok public announcement over, now I can get on with my rant. I REALLY HATE MOBILITY SCOOTER’S!

After the day I have had this hatred isn’t just pure evilness its actually due to, two near death ( I might have exaggerated a little bit) incidents involving them that I experienced in the space of about 15 minutes, let me explain.

I was shopping, shopping is something I enjoy immensely and am rather good at, (being female and all). I walked into a shop wielding my long cane, and admittedly today has been a bad eye day but even still I really wasn’t expecting what happens next. CRASH! F%@K! $%@”! Ooowwwww! Yes ouch readers I walked straight into an empty mobility scooter witch some bright spark of a human being decided to park in the middle of the isle of the shop. People really do chose there mobility scooter parking places well don’t they, they evidently think of other people with disabilities, not just me, a blindy but other people would have had issues there. The gap ether side of the parked scooter was rather small and I very much doubt a wheelchair user or perhaps even another mobility scooter user could have squeezed through the gap.

But alas that was not my only mobility scooter accident today; there was another incident that was even less my fault.

I was heading out of the shopping centre when I heard the familiar wwweeeeeerrrrrrr of a mobility scooter approaching, this time the lighting was better and I could see that the driver was looking in completely the opposite direction to that he was travelling, I started to look for away of moving or getting him to stop, but I was rammed between a buggy and various other shoppers and a bench, I had no option but to stop and wait for impact. CRASH! Again, but this time I managed not to swear, if I’m honest I think I swore less because it hurt!

My shins are bruised and all because some old @£%$ wasn’t looking where he was going, he is lucky, he has eyes that work so why oh why dose he chose not to use them!

On another note it could have been a lot worse, the effects of his immense stupidity could have had far worse consequences if for example he had hit a small child or someone who is less steady on there feet than I am.

I no recently in DN (disability now, a campaigning magazine here in the UK) there was an article about scooter users feeling bulled by the Mail in Sunday (MoS) after “a series of negative articles about mobility scooters.”

I’m now thinking something needs to be done to promote the correct use of mobility scooters, maybe a mobility scooter driving test or maybe even scooter proficiency test. I do understand that for many people scooters are there lifeline to independence a chance to explore freedom that may have been taken away from them, and if I’m really honest I really want a go on one they look quite fun, but I think they need to be driven responsively so my shins don’t suffer anymore, I must add today wasn’t the first time I have been hit by a mobility scooter.

Right anyway bitch over, I'm off to find some more ice for my shins!

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The Wheelchair Choice

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lilwatchergirl | 08:52 UK time, Tuesday, 21 August 2007

I'm a part-time wheelchair user. I make a conscious choice over whether to use my wheelchair, not only every day but every time I leave the house (I have other 'mobility-friendly habits' for indoors, mostly because my flat is the size of a large cupboard). This choice tends to be based around whether my mobility and independence would be best served by a) using my old, second-hand and rapidly falling apart, but otherwise very useful powerchair, b) being pushed around in a massive but more portable NHS-standard manual by my Girl, or c) walking the very variable distances that are still possible if I have a stick for balance and support.

There are, of course, serious barriers and problems that come with choices a) and b), as you'd expect. Not least of these is the battle I'm waging with my local council over a small access adaptation to my home that they're currently refusing to make (as anyone who reads my blog will know, as it's quite literally all I talk about these days. More on that here another time, I've no doubt). Transport, shopping, leisure activities etc are all a lot more difficult from a seated position, since the world is not designed for people who are effectively three feet tall and can't do steps. But the very fact that I even have the chance to worry about lack of access to such things, instead of having to sit at home waiting for other people to bring me news of the outside world, is surely a positive thing.

Which is why I find people's attitudes extremely interesting, when it comes to The Wheelchair Choice. I'm not talking about the hordes of oblivious strangers who regularly step out in front of me because they're incapable of looking down, or who are depressingly patronising about offering me 'a push' (in my powered wheelchair) when I'm just waiting for the lights to change at pedestrian crossings. No, I mean people who know me. You'd expect my friends and family to be pleased that I can once again, after nearly a year of very serious illness, complain about how very bored I am by my intense lack of social life, instead of by being unable to leave the house. And of course, most of my best friends have been fine about it, in the same way as they were nonplussed when I started going out with a girl, or when they first found out that I like to go to church every Sunday (OK, so they're still not quite sure what that one's about). An awful lot of people have surprised me, though. Even people who I thought knew me really well have questioned how much I really 'need' the chair (I want to answer "And how much do you really *need* a flushing toilet?" but I'm just not nasty enough), or whether it wouldn't be better for me to try and 'keep going' with my stick for as long as possible (because it's just so much fun to collapse in pain and be entirely immobile for the next three days, all because you wanted to see how far you could really walk that morning). My neighbours have been confused by the fact that I can do some weeding in my garden - from a comfortably seated position - but still need to 'inconvenience' them by my use of a wheelchair (yes, I'm harping on about that adaptation again, I apologise). Even some close friends have worried about appearances, asking me not to stand up at all in the pub, in case other people accuse me of not needing the wheelchair (as if it's their problem what people think about me). Family have admitted their 'confusion' over the chair (what's confusing? It's a seat with wheels attached) and a few people have quite clearly stated - if only behind my back - that I use it more than I should for 'attention'. I'd like them to try out some of this attention for a few days and then tell me whether they like it. Being daily offered that push at the lights is not a particularly fun experience, people.

I think the problem here is society's perception of what a wheelchair signifies. We use phrases like 'wheelchair-bound' and 'confined to a wheelchair' that suggest that, rather than being something enabling and life-enhancing, it's a wholly negative experience. I was at a comedy club the other night (without my wheelchair, since it was, of course, up a large flight of stairs), where an otherwise very funny comic made a passing reference to a wheelchair that betrayed an attitude of 'your life is over' towards people with mobility impairments. While most medical professionals are now becoming increasingly supportive of my need for ways to increase my choices in getting around, I still find some of them very resistant to the idea. Some months ago, just as I was gaining enough independence to start leaving the house alone, my physiotherapist signed me off with the words "You must keep working harder, Naomi, because this is not normal. You may think it is, but it's not." What an encouraging thing to say to someone who's just discovering how to live a relatively active life again. If that's how medical people think, no wonder society thinks wheelchair users should be shoved out of sight where they can't offend anyone with their irritating negative choices.

I'm being interviewed today for a study into how people cope with changes in health and impairment, by the social policy research unit of a university. They'll be following me and my choices for about three years. I'm sitting here with my breakfast and a list of areas of life - education, employment, housing and so on. I am supposed to discuss ways in which I have been able to exercise choice in these areas since I developed a physical impairment. I'm struck not only by how I have had almost no choices in any of these areas since I became unwell, but also by how much I further reduce my choices by that daily, 'ultimate' choice I make - to use a wheelchair. And yet I continue to use it. Why? Because it's also the most empowering choice I've made since I became ill. It's allowed me indepedence, mobility, freedom, the opportunity to look for work again, and the chance to get some control back over my life. Am I pissed off by the limitations it places on my access, and by people's attitudes to it - to me when I'm using it - to the ways in which I choose to use it? Of course. It's more than worth it.

Which is why my favourite comment about wheelchairs and attitudes will always be that of my wonderful flatmate, upon hearing about my neighbour's negative comment regarding my Wheelchair Choice when I can still weed the garden. "It shouldn't even matter whether you choose to use the wheelchair because you just enjoy it more than walking. It's your choice." Well done on the Social Model thinking, Flatmate. If it enables me, I will wheel.

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Sleeping Disabled

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Wheelchair Dancer Wheelchair Dancer | 07:33 UK time, Monday, 20 August 2007

Are you disabled in your dreams?

I have not been able to sleep well recently -- for no real reason that I can tell. So, I have been doing the websurf at 3 AM thing. And I have stumbled on the question of disability and dreams. Does it/should it matter if you are/are not disabled in your dreams? At first, I thought that the question should have definite answers. I know, for example, that when I began to dream in German and write shopping lists, todo notes etc. -- I was on my year abroad -- I knew that I had finally made the transition to being fluent. No longer was I translating everything backwards and forwards, I simply existed in German. Even today, over 10 years later, I remember my experiences from those days in German. They were lived and later written in my memory in German. It feels weird to describe the wall coming down in English.

What I have been reading thus far suggests both that if you have an acquired disability and you don't dream disabled, you haven't accepted the transition (DENIAL!!) and, contradictorily, that people who made the transition decades ago and are comfortable in their new worlds can appear disabled and non-disabled in their dreams. I haven't read anything about the experiences of people who are disabled from birth; most of what I have read concerns traumatic injury -- what if your impairment experience isn't really like that?

For my part, I rarely dream -- or I rarely recall my dreams. And when I do, I remember primarily the experience or the narrative -- the fear, the excitement, the people I encountered, the situation, etc. I am mostly disembodied, if you see what I mean. I don't dream about inaccessibility, per se, or, indeed, about explicitly disabled issues. I do occasionally dream anxiety stuff before a big performance, but that doesn't exactly connect.

So, I suppose that I don't really have an answer for myself. But I really want to know.

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A member of the disability apartheid

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Elizabeth McClung | 06:41 UK time, Monday, 20 August 2007

What surprised me this week was not just the awareness of a disability apartheid, but the short space of time it had taken me to completely accept that I too did not deserve equal access. I was jolted awake with last week’s article in Japan Today about a judge in Kobe District Court who dismissed a case for compensation by Masayuki Ota, a 37 year old man with “brain paralysis” (or what we know as Cerebral Palsy). Ota, after buying a ticket on Singapore Airlines was refused airplane entry at Kanasi international airport because of his “disabilities to his limbs and in speaking ability.” Ota had obviously bought the ticket, gone to the airport, and gone through some of the check-in when, two hours before the flight, his visible disability was noted and he was denied entry to the flight. The judge said that the captain and flight crew must “have a common view” on what to do in an emergency. Or rather, seeing someone with CP, the flight crew didn’t know what to do, didn’t know how much help Ota would need, was not trained in giving that help, and decided the solution to the problem was to force it back on Masayuki Ota (in denying him the right of equal access to goods and services) rather than change the organizational structure.

Having been on planes with people who speak almost a dozen different languages (none of which matched the safety announcements), I find the excuse of “safety in times of emergency” to be laughable. The fact is, you can be too drunk to stand up while on an airplane (as I was once when I got bumped to first class and went crazy on free champagne) much less find an escape hatch and still have no problem from the staff. But if your limbs twitch and you slur your words on boarding however...... As for “special attention” there is always at least one person who pushes the “crew attention” button within three minutes of boarding (and every 4 minutes thereafter), but again, they don’t have speech difficulties and a visable disability.

Admittedly, this event occurred in Japan, a country where the government poll earlier this year found that almost 83% of those polled say there is discrimination against the disabled even though over 33% of the respondents had disabled relatives. Or as stated (without irony) in the comments; “Disabled people just need to learn, like women, elderly, foreigners and the infirm that all they need to do is learn to "be normal" and they won't notice these problems any more.” Errrrr...yeah.

Two statements regarding Masayuki Ota’s case struck home. The first was from a comment on the article (like the BBC’s comment system), where a person stated about the airline, “they are not running an air ambulance service. The next thing you know quadriplegics will expect the same consideration”. While Ota’s lawyer said, “disabled people cannot move freely if it is necessary for them to notify in advance each time what disorders they have”.

These two statements struck home because I have so often encountered the first attitude, and only now realized how much I had accepted the second. I am so used to being left behind by wheelchair accessible buses whose drivers don’t want to ask able bodied people to move for me that I don’t even bother complaining (not after the training manager informed me he told his drivers they could leave wheelchairs behind in “some” circumstances). Indeed, when I go to a restaurant and am told that the two tables in the entire establishment I could have used are full and I will have to wait and hour or more (though the restaurant is half empty), I now consider it my fault for not notifying them in advance.

I moved from the UK before they had passed a law ensuring that people could not deny goods or services based on sexual orientation. And you should have heard my screaming every time someone told Linda or I, “No, can’t do it, not for you” because we were lesbians. If last year, someone had told me, “Sorry, tall females can’t eat/shop/get haircuts/get beauty treatments/exercise here” I would have run to the papers with a strange glint of righteous fury in my eye. These days, because I can’t run anywhere, getting told that about twice a day is normal. Wednesday, when I went to the mall I was told by one store clerk, “This isn’t a store for wheelchairs to come in” and I was like, “Okay.” (Remember, I live in Canada; no disability laws here). If I don’t give advance notice AND a doctor’s note, I don’t get to use the gym or board a plane. I was talking to my physiotherapist about getting a doctor’s note for the BC ferry system to use their first aid bed while on board and she told me not to do it because “then they (BC Ferries) might decide to ban you from using their ferries.” That’s not something you want to hear when you live on an island. I’ve been banned from gyms, I’ve been turned down by agencies which transport people to medical appointments after being told I would have to hire the car and an RN at my expense. I agreed. They then decided, “It wasn’t worth the risk.”

So why do the same gyms which turn me away have subsidized exercise programs for people recovering from a heart attack; the same gyms who allow type A personality “heart attacks waiting to happen” people to come and do what they please without a blink of an eye? And these are the gyms which require me to have authorization from a doctor, AND the head of the gym AND the athletic director? But more important, why do I think that is normal? Talk as much as you want about a social model of disability or a society not able or willing to see and treat disabled as equal; but at what point did people under apartheid accept that it was “just the way things were.” Why is it my responsibility to tell everyone everywhere I wish to go in order to ask permission from them first? And when, in just six short months, did this become something I don’t even think about anymore?

The overwhelming majority of comments on the airline article support the airline in not allowing the man with CP on board, including comments from airline crew staff. One crew member asks; how am I, a woman, supposed to help him wipe himself in the bathroom? Another wants to know how Ota could think about foisting the responsibility on others when it was HIS role to find someone to accompany him. It was? Under what law does being disabled mean the person with the disability is required to find themselves “a keeper?” Particularly when it is so clear that those commenting (and likely those on the flight) had no idea of what different disabilities there are, much less that disability needs are individual. “The next thing you know quadriplegics will expect the same consideration”: Ignoring that the comment seems to put quadriplegics on the same level as certain animals; as the videos on Wheelie Catholic’s site show, not only is a quadriplegic quite capable of doing their own shopping (see Aug. 4th) and making pizza (depending on site of spinal injury) but I realized that depending on my condition that day, they are far more capable in some, perhaps many respects, than I am. If through one blog, I can educate myself for free, why is it that the people earning money from a disabled person’s airline ticket cannot?

Let me give you another example. I subscribe to Shojo Beat, a “girl manga” magazine (yes, I know it is aimed at 17-18 year olds – isn’t everything interesting?). They are running a contest ending Aug 27th called “Design a Beat Girl” challenging artists to draw their idea of the Shojo Beat female reader. In the July 07 issue announcing the contest, under the main title, runs in bold the subtitle: SB seeks able-bodied artist to portray spokesperson”. My reaction was, “Oh well, guess the fact that this Shojo Beat reader is in a wheelchair excludes her; weird.” Why did the magazine require the artists to be “able-bodied?” But more importantly, why did I just accept it? If it had read “Magazine seeks Caucasian artists only” I would have been livid. There was no article that ran later retracting the headline. And why would there be when even their disabled artist reader could only come up with a “shucks!” level of indignation.

The very first brainwave decision I had after being confined to the wheelchair was to take up indoor rock climbing (It was half denial, half reaffirmation). I called three climbing gyms; only one would take me. Basically, I’m paying someone $30-40 an hour to hold the end of a rope for me, so what does it matter if I am using 2 limbs or 4 to go up that wall? But obviously to some it did. So I sighed and went to the one place that said I could come.

Where the heck did my self affirming identity go? Why would I still be outraged today if someone denied or restricted me because of my sexual orientation but would placidly accept the same treatment if they said the magic words; “you’re disabled”? I may say that being disabled doesn’t mean someone is half human, or sub-human or less a person than someone else, but I obviously don't believe those things about myself. The proof is in the stories, in all the times I have and still let someone (let’s face it, pretty much ANY able-bodied person) tell me I can’t eat there, or shop there, or work there, or even stop and rest there. Or what about the dozens of times I have seen that panicked face of someone looking at me, my chair, my oxygen tube before telling me “You are too sick for us/here” and then accepting it quietly as my just due?

Seriously, what is wrong with me? And how do I change it? Every time I accept being treated as less than an equal I am reflecting back the ignorance and prejudice I have absorbed from those around me. Why do I allow them to make their inflexibility about disability my problem? If I start acting as if I am an equal person, will I also start to believe it about myself? Please, tell me this passivity has a cure.

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A Mall and the Night Visitor

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Dave Hingsburger | 13:02 UK time, Friday, 17 August 2007

After work yesterday Joe and I stopped at a big mallon Highway 9 to do some shopping and maybe get a bite to eat. Our practice is that Joe pushes me the long distances between stores that we want to shop in and when in the store, I push my self around. I like the independance but also the privacy. We'd had a good time an picked up a few items we need - I am three shirts richer - and a couple gifts for friends. I spotted a place to have tea and we pulled up to the table and pulled out our purchases. I've done that since I was a kid. I'm still excited by shopping and it seem miraculous that what once was theirs is now mine - awesome.

The tea arrived and we chatted as we watched people in the mall. I noticed a woman notice us in the food court and head over. By 'us' I don't mean Joe and I, she noticed all of us, the food court was quite full. She dropped off cards in front of all those eating or drinking and when the card flopped down in front of us I saw it was an "I Am Deaf Please Help Me Out" card that had the fingerspelling alphabet on the back of the card. I know rudimentary signs now, having once been relatively fluent and I love the chance to practice. Before she turned I taped her arm and she literally jumped out of her skin. I quickly signed 'Sorry' and she looked startled and turned away.

I waved my hand to catch her attention and started to sign to her, she flung her arm at me with disgust and went on her business. Back to where she originally dropped cards, she was now picking up cards with money. Few people gave but those that did were quite generous. As she approached, I wanted to know what I had done to upset her. So again, I signed the words that I remembered and fingerspelled the rest.

She leaned down to get the card and placed her face close to mine. "Listen, stop that sign right now. I'm not deaf. This is how I make money." There was malice in her voice. She frightened me. "But that's ..." I started and she knew where I was going so she made odd 'deaf sounds' with her mouth and pointed at us and fled. We both knew immediately what others were thinking, us mean men treating that woman badly.

We got out of there quickly.

I still don't know how to think about this.

It outrages me than a non-disabled woman is using disability to continue the stereotype of 'needy beggers'.

It outrages me that all the people in the mall will walk away of thinking that deafness equals unemployability.

It outrages me that when I need to do something, in the moment, that sometimes I'm truly paralized - my mouth and mind freeze.

It outrages me that, now, as a disabled guy, I actually felt the she physical force of her voice and tone and felt frightened of her ability to hurt me and my lack of ability to really protect myself.

It outrages me that I didn't know what to do next.

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Physical Therapy

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Wheelchair Dancer Wheelchair Dancer | 03:35 UK time, Thursday, 16 August 2007

In an earlier post prior to my most recent injury, I wrote about my current physical therapy situation:

[My PT these days is mainly in a safe, private space. It's about relief, stretching, realigning, damage control, damage mitigation, performance enabling. I still hate it, but both my East and West Coast PTs and I have come to a semi mutual agreement about what to do. I am mostly safe. West Coast PT wraps anything she's not working on in blankets (of the leopard print variety ... grin). She's got a great office. The East Coast guy works in my home; I choose the music and I get to drink coffee. Neither of them forces anything. Neither of them asks more than I can do.]

Until the shoulder AC separation happened, I thought this was a pretty sweet setup; all my emotional fears had been allayed, and the body stuff was going really well, too. I was on the West Coast when I fell and hurt my shoulder, so I was thinking I would work with my usual person. As it turned out, I couldn't drive 45 minutes to get to her private office. So, I had to start again. At a new place, in a public clinic, with a new person -- who didn't do home visits. I was totally unprepared. And so were they -- but that last part was wholly my fault.

I decided beforehand that I wasn't going to tell them that I was a wheelchair user; they were just going to have to deal. And boy, was that a poor decision. I shouldn't have been driving, but I drove -- I figured 5-6 minutes was nothing. I couldn't push my chair by myself from the parking lot -- I couldn't push it anywhere else either -- no reason why this location was going to make a difference. But, hey, I was feeling tough and angry. Then, I found that no one at the front desk was answering the clinic phone. I needed help getting from car to clinic, but decided not to wait around for it. I grabbed my crutches and walked. But that was a bad decision, too. I was exhausted, in pain, my legs were wobbly and doing the spasticity thing. I collapsed onto a chair, and chaos broke out around me. Immediately, they ran down for my chair, lifted me onto a table, plied blankets and water -- triage was the name of the day. I felt stupid for taking a "like it or lump it" brazen cowboy attitude. It was unnecessary, and I put myself in a worse situation than I would otherwise have been in. I was impressed by how sensitive they were to my feelings and by the care they provided.

After that, things have been going really well. I work only with the lead PT (this is not a privilege, see below), and she has been creative about coming up with a good care program (going to the local rehab center for water work), adapting the exercises because I can't get my chair up to the machines, allowing time to rest in between the exercises, etc. etc. I find this pretty funny. I mean, it's a physical therapy practice, right? In the Bay Area -- crip central... Don't they think there's at least SOME chance a wheelchair user might come in and want to have PT? I mean, stuff happens and not just to athlete-dancers. Not everyone can or wants to go back to rehab as an outpatient.... But no. Even the basic treatment tables are too high to transfer to. Sigh. Guess it's kind of like doctor and dentist offices.

Lead PT is pretty cool about it all; she understands that I am disabled, and she also understands that I am an athlete, with the performance expectations of an athlete. She has done a great job of working with my limitations, but not treating them unless they are directly relevant to the injury and to not falling again. She has also been eager to learn about what I do - we watched some video and I showed some photographs. I demonstrate different movements so she can figure out how to get me back in shape.

Things got even better/funnier when she broke her ankle; she came in with new experiences of how people had looked at her, treated her, spoken about her over her head..... Was this part of my world? Did I know what she was talking about? Was this what it was like to be disabled? Well, no, not exactly... but some of the experiences were similar, I said. She couldn't believe it, had no idea, completely eyeopening... well, duh!!

And, so, with the recovery under control, I have gradually become aware of the effect I am having on the other clients and the other employees. I freak the trainees out! It's not that I am privileged to work only with Lead PT, it's that no one else feels comfortable working on me. The trainees have very little neuro experience; they worry about the spasm/involuntary stuff; they are scared to touch me. They don't work with disabled people often -- the most physically impaired people they have seen are the post surgical inpatients (for some reason, they don't see age-related impairments as disabilities). They've never even seen a wheelchair like mine -- I have a nice chair, a titanium ultralight. But it is not all that unusual, all things considered. It took one guy three sessions to remember you could pop the wheels off and that it didn't fold.

The same cheery chap asked me why I was spazzing more today; I grouchily said it was his job to know that kind of thing. He went to ask. Another one confessed that even putting ice on my shoulder was scary. A third said he was too weirded out to stretch me -- I have a nice mix of hypermobility and spasticity -- getting an actual stretch is always an undertaking. Lead PT has them watch and learn -- but she does ask if I mind. Mostly, I don't. But sometimes, I just want to get strong. I don't want to be teaching these sweet young things about disability and wheelchair use.

I terrify the other clients. OMG. A wheelchair user. A cripple. The office seems to serve three main kinds of clients (there are other people there, but these are the dominant types): high school athletes (some of whom are oh-so-worried about their ability to get a college scholarship -- it makes me sad), middle age sports fanatics (you know, was out this weekend climbing mount everest for a round of golf and I reinjured the old college knee), and older people recovering from illness, injury, or doing maintenance routines.

The young look at me -- I feel that they are thinking this could never happen to them. They are strong, beautiful, sporty: disability? Never.

The weekend jocks? They eye me warily. They know. One day, it might happen to them. Perhaps, they are already on the path; this one hurts more than they had ever imagined. Perhaps, they will never recover. They are most likely to encourage me. "Keep going, there." "Wow, you've got some strength." "Nice chair. Can you go fast?" "You are so inspiring to watch." "You do that sooo well." Puke. Vomit. Hurl. Watch me run over your feet and cripple you. I am mean and evil. I also use them as my benchmark. I am on 2lb weights now, with 3lbs for bicep curls. One day, I am going to kick their little asses! OK. No time soon. But I do spur myself on with that thought.

The older people and I barely make eye contact. And if we do, it is so they can pour out pity and sympathy. For all their trials and tribulations, they've escaped the dreaded wheelchair. I get this; I've slipped over the edge they are working so hard to avoid.

And for all my bravado and mean toughness, I confess that my pride is hurt when someone who looks older or more frail than I turns around, picks up the 10lb weights, and does 3 sets of 10 without appearing to puff/ sweat. When it comes to stereotyping, prejudice, and the body, I am as bad as anyone.

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The Wonderful Wacky World of Work

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lilwatchergirl | 20:20 UK time, Wednesday, 15 August 2007

Hello there, Ouchies. I think I'm supposed to introduce myself in my first post on this guest blogging thing. However, since a fight to the death is currently being waged in my head between migraine and pain medication, and I'm still not sure which one's winning, I might need to keep it brief. Naomi. 29. Londoner. When it comes to disability, I'm limping along that fine line between visible and invisible. Still getting used to my latest impairment, a neuromuscular disorder which has quite recently led me to start learning about wheelchairs and related exciting things. I've been involved with disability rights since the dawn of time, but I still don't know how to enable certain people to adapt to my new status as a mainly-seated member of society. Answers on a postcard.

So, back to what my brain wants to write about today. Work. The government has recently been trying to get more disabled people to become economically useful members of society (because, of course, no other kind of 'useful' exists). This initiative has had exactly no effect on me, until now. Still, I'm pleased to say that my newfound employment has nothing to do with the jobcentre, or any other government service. I've been without gainful employment since about November. I've become very comfortable with mornings of daytime television and afternoons of extended naps, from which I wake just in time for dinner, and then back to bed for the night. Indeed, if it weren't for the fact that my PA arrives at 8am, I'd truly never get up at all. Thus, it came as something of a shock when I found myself applying for jobs. I'd been given the impression, from the one laughable 'work-focused interview' I recently had with my local jobcentre's 'disability advisor', that even just filling in application forms would now be so difficult for me that I would need many types of advice to help me deal with this. (Apparently, when you go onto incapacity benefit, you also become incapable of doing anything without massive amounts of support that mostly just makes you never want to leave the house again.) While signing up for some of this advice, it occurred to me that I still had five years of teaching experience and a brain that sort of works, despite a couple of neurological problems. I applied for a few things myself, just to see what happened. Also, because even on large doses of painkillers there's only so many hundreds of times you can watch 'Cash in the Attic' before it ceases to be entertaining.

The next thing I know, I'm being asked to come to a job interview. Huh? I wasn't expecting this, to the point that I completely missed said interview due to not checking my e-mail. Fortunately they were keen to get me in (ah, the joy of workplace disability equality schemes) so they rescheduled. At this point I encountered the day's first barrier to employment: I realised I had no way of getting to the place (in the ten months since I was last working, I've lost the ability to use the London Underground. I don't miss it). In the end, The Girl - my long-suffering partner - took the day off work to drive me. Problem temporarily solved.

Then there was the interview itself. The place was terrifyingly wheelchair-accessible. The interviewers sat down with me beforehand to ask what reasonable adjustments I needed for the afternoon. I was bemused. Equality of opportunity? In the education sector? Odd. But then it all starts to go a bit random, as we encounter barrier to employment number two: the pre-interview testing. I knew it was going to be interesting as soon as they started talking about a numeracy test and I realised I'd forgotten to tell them I'm dyspraxic. You want me to turn fractions into percentages? Why not just ask me to achieve nuclear fusion or run a marathon? There was the classic moment where they offered me more time on this horrific test, to compensate, and I would have run away screaming except that my wheelchair only does 3mph which doesn't make for a quick getaway. Then there was the case study I had to respond to in writing - would it be OK for me to hand-write this? Of course, I naively answered, thinking it would involve a couple of minutes of note-taking. It turned out to be an essay question that took half an hour. My right hand is still refusing to forgive me. And after all that, I was so tired that I didn't much care how the interview went. I think I said a few nice things about equal opportunities in the classroom.

So, I experienced some surprise when they rang today to offer me the job. It's only now occurred to me that I actually have to go to work, in my entirely unsuitable wheelchair, crossing London without access to decent transport, for 18 hours a week, every week. And interact with colleagues. And teach students. And pretend I can remember what I'm doing. And stay awake all day. This could be interesting.

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Ouija boards & Telethons: a guide to funded home care

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Elizabeth McClung | 06:02 UK time, Monday, 13 August 2007

Okay, here is Elizabeth’s E-Z Guide to getting funded PA’s/home care. Step one: Get a good Ouija board. Step two: Ask it who to call in order to get home care. That’s it. Hey, it worked for me.

Pretty short guide, huh? See, I was turned down twice in applying for home care before I called a total stranger to find out how people with MS eat with hand/arm tremors. The next thing I knew I had people in my apartment every day with really long questionnaires (You may think I am skipping something, but I’m not; the people with questionnaires would say “Anne-Marie Q. referred us to come assess you.” And I would say, “Who?”).

The problem: loss of my small motor function, hand/arm trembling and having my hands and arms go “almost” where I told them to. Most nights, getting ready for bed is a loud event: Reach for the toothbrush, but knock over the hairspray and foundation bottle instead. Swear. Reach for toothpaste when arm jerks left instead sweeping the hair dryer and brush off the counter. Swear more. Vow (again) that tomorrow I will clear the bleeping counter of all the bleeping things so I stop sounding like a bleeping drunk trying to juggle wine bottles.

I was having the same problem with eating, but with more splatter. See the fork rising toward lips, see me trying to make final micro adjustments, see fork falling from fingers. See Elizabeth swear and beg Linda, “Please, no more peas!” In the lingo of one and two year olds, “Here comes the choo-choo, open wide! Oh no, the rail service has had a horrible crash just 40 feet from the station!”

So now I had, arriving daily, young women with half inch thick assessment questionnaires (including a whopper from the World Health Organization). I was exhausted. I fell out of the chair a few times during the questions. Or (as happens when I get tired) I started slurring my words. “Just another 60 questions or so,” they would assure me before continuing; “Are you now wearing adult diapers? If not, how many weeks/months until you anticipate wearing adult diapers?” I was chastised for not having made a living will. I was chastised for not having put in wheelchair bars. The assessor was 19. I had spent over ten years getting four different degrees including a Ph.D. I tried to assert some authority the next time she called me Liz by pointing to myself and correcting her with, “Dr. McClung.” Only I got stuck and couldn’t get past the first syllable. “Daaawwww...” I started again gesturing to myself, “Daaawwww!”

She turned to Linda and asked a) did Linda have power of attorney yet and b) was Linda sure I understood what was going on?

By the time the last woman, C., came to assess me, I was a wreck. I had a visible difficulty in supporting myself enough to sit upright. C. was sympathetic. She thought I was being “brave.” When I mixed up what month it was, C. got a little dewy eyed. Linda moved me out of the wheelchair, and I continued answering her questions while lying down and on oxygen. C. kept offering to “come back another day.” I was desperate for her to stay (God, not ANOTHER visit!). C. saw this as “heroically struggling on.” At the end of the questions, I gestured her close, pulled off the oxygen mask and whispered to her, “It’s not like this all the time; often I’m better.” C. responded by immediately authorizing homecare.

She went off and talked with Linda. Catching her attention, I tried again, waving her in, and pleading, “It’s not always this bad.” C., with a tremor in her voice told Linda that normally I would only get 120 hours of home care a month but she was going to authorize 160 hours. I was a “special case.” I realized that she thought I was “keeping a brave face against adversity” and lying to her about my condition as a proud yet inspiring young cripple. Seriously, the more I tried to convince her I wasn’t like this ALL the time, the faster she authorized things. Eventually I gave up, fearing one more attempt to convince her I wasn’t completely feeble would end up with me on a Telethon.

Two hours after she left, she called back to say the first home care worker was coming the next business day. And that an occupational therapist was coming the following day to put in wheelchair bars and get other assistive equipment for me. This kind of speed and concern in a nationalized health service is like having your bank call to let you know they are giving you $50/50 pounds because they noticed you are low and are concerned you might incur bank charges. I kept waiting for the health police to burst down the door shouting accusingly, “You do get better!” and haul me off to health service detention.

What I didn’t realize then was that getting a PA/home care twice a day could, at the start, be its own form of punishment. My first clue was when the first worker walked through the door and said in puzzlement, “You’re in a wheelchair?” My file had been sent from C. to a home care provider, only I was two streets out of their catchment area. So they forwarded the file to another home care provider. Somehow the file got lost. The home care workers had been informed of my health problems; which consisted of one word: Depression.

Ah, no place like home. Now this was the level of misinformation and incompetence I had come to trust.

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This could mean trouble

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Jemma Brown | 22:31 UK time, Sunday, 12 August 2007

Well I went to London yesterday it was good to meet up with some of my mates and stuff and all though it started in a slightly disastrous way it was really good fun.

However on the way back I had no idea how I was going to survive the boring train journey home so I decided to pop in to WH Smiths and pick up a magazine and some food of some form, I was slightly hungry, so thought I'd be starving by the time I got home.

Well I ended up coming out of Smiths with 3 books! And no food. OK not buying food was a major downfall but at least one of the books kept me entertained on the journey home

The bad thing, I'm being really careful not to develop eye strain again, but have had it mildly for most of today.

I don't no why suddenly after 18 years of living I have discovered a love of reading information, I just want to read, gain a greater knowledge of the world, have greater understanding and be a more rounded person. I don't want to stop reading I want to read everything I can, but the problem is I can’t!

I have never in my life managed to finish a standard print book, this is why suddenly discovering a love of something I enjoy so much is dangerous, I enjoy it but I cant rely on it.

I don't no what’s suddenly spurred my interest in literature. It’s not something I have ever been remotely interested in ever before in my life. Both my parents are great readers, My dad reads print, my mum Braille, they read more books between the two of them than I will ever dream of, and its something I have never really understood.

A part of me wonders whether this is a part of my recovery, discovering a new interest, the depression lifting, the anti-depressants doing there job.

The problem is it’s not the best interest for a partially sighted chick to have, on a practical level

I WANT A D.A.I.S.Y TALKING BOOK PLAYER!!!!!

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Disability, Race, and Christianity

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Wheelchair Dancer Wheelchair Dancer | 11:22 UK time, Saturday, 11 August 2007

On my blog and in real life, I often muse about disability serving as my "get out of the race jail free" card. I don't mean that I automatically pass GO and collect 200 bucks/quid (bucksquid.... quidbucks?); it's just that the unpleasant surprises of the community chest are rather different. Instead of being seen as an uppity welfare queen, I am now a pathetic cripple. I am no longer a potential shoplifter, credit card/identity thief; I am a pitiable thing of whom every care must be taken. I don't like either, btw -- they'd be better off getting some wide, light weight doors and ramps in place, rather than drowning me in fake solicitousness -- but I am amused to find that my darkness becomes invisible, wiped out by the prominence of the hulk of metal in which I sit.

A second gripe that I occasionally make is that, in the US at least, the disability consciousness of the present is a very "white" disability consciousness. I am not the first to make that point, and academics are busily writing papers that name the whiteness of disability studies. Other scholars are working on race and, in particular, blackness and disability. For me, one of the problematic issues is Christianity.

Faith isn't just a "black" thing nor are all African-Americans/Afro-Caribbeans/Africans Christian. Black churches are no worse than any others: I find the "all are welcome" US Episcopal church just as problematic on disability issues as I do the fundamentalist communities in which the black members of my family (I am multiracial) participate: ramps are as scarce as steps and bad attitudes are omnipresent in both worlds. But for better or for worse, the more evangelicy fundamentalisty branches of Christianity (yes, I know they aren't the same thing) are the ones that define religion in the black communities I haunt.

The problem is that the Bible just isn't nice about "ailing, failing, and broken" bodies. And it's not as if you can rewrite the Bible cutting out the bits you don't like. And yet, I find it impossible to live with the (begin deep sigh): "It's the Lord's way. He punishes us for what we do (or haven't done). Suffering is a daily part of life. The Lord will provide. He sends us trials. You just lift yourself up to Him and have faith. You ain't healed yet? Pray harder. Believe and you shall receive. God's healing will come." Gosh -- all that makes me sound bitter. I AM bitter. I am scared of being around people who think my disability is MY fault, a sign of my weak faith or, worse, people who see my chair as a sign of the Lord's work on earth. Everything for a reason, and nothing more than you can bear. I've been specially picked for the kind of suffering and trial. And there's no speaking back to this, you know?

Except that there is. Nancy Eiesland's book, The Disabled God, argues that the resurrected Christ is disabled. Josie Byzek organizes against those who would use faith to promote intolerance. And our very own OUCH! humorously reclaims Moses as one of us. Yes, really! I am a little skeptical, sorry Paul, but hey, whatever. Even the act of looking at these things lightheartedly can spur someone else to do some more rigorous work elsewhere. It's about the ideas. Every time we do this kind of thing, the history of persons with disabilities becomes a little more visible. There are probably more I don't know about -- suggestions for extra reading?

For my part, I wonder if my small part of black culture really could be in the vanguard of a different understanding of race, religion, and disability. My sense is that this new understanding would come from a reinterpretation of all that negativity. Just like minoritized communities take the words that oppress them and turn them into words of pride, my thought is that one part of a black disability consciousness would be a positive understanding of the history of sin, impairment, blessings, and faith.

I'm choosing to offer this as a race inflected understanding of disability because my black community is deeply religious: Even if people don't observe or believe themselves, they have close family members and friends who do, they may have been brought up with faith, and, weirdly, even if they don't believe, they still articulate and act upon many of the tenets of the Christian faith. Religious proverbs or ideas are a part of daily conversation. On top of this reconciliation, I would add reinterpreted discussions of social power, self-determination, autonomy, and responsibility.

How all this would happen? I don't know. Suggestions welcome.

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How does your garden grow?

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Seahorse | 16:33 UK time, Friday, 10 August 2007

So I started a blog. Not a huge deal in the great scheme of things, but a big deal to me as it got me communicating again. Funny how communicating turns out to be a reciprocal thing. You give it a go and hey! People respond.

It's been a very gentle process. I needed it to be that way.

My blog is like an allotment. Allotments are really taking off again in the UK. Small patches of land away from the hubub of daily life, where you can go and grow things and reflect. My blog is where I go when I need time out. I tend it with the love I would pour into an allotment if I had the strength to garden.

Sometimes there are other 'allotment holders' to pass the odd comment with, whilst gazing vaguely at the virtual sky. Of course, I hasten to add, their allotments are often far busier and more exciting than mine. And I know a few of the people who pop by my 'allotment' may not appreciate the analogy. They are way too cool. But it's not all about flat caps and little potting sheds.

Blogging is about creating something, then nurturing it. A space to be tended as and when you feel the need. A place where you can find like-minded souls, and equally not so like-minded souls who can prove very fascinating.

It can feel like a solitary pursuit at times, but as you water and nourish and plan and expand your little site, it really can grow. And what starts out as a quiet corner with just you can turn into a regular turning over of more than just the basic earth. Ideas are formed, words are carefully trained, observations recorded and theories take root. There are appreciative exchanges, nods of recognition. On a busy day you may uncover as fierce a debate as you've seen anywhere.

Of course in moments of impulsivity, some people dig the whole thing up and start over. And some people stop tending their allotments, because it can be hard work at times. You can hit a difficult patch, weeds take hold, things don't grow as you'd hoped and it all starts to feel more like hard work than an escape.

But most people I know keep at it, and the rewards are many. A daily round of blogs can show you more of life in an hour than you can get in any other form of communication. Riots of colour sit alongside quiet, reflective corners. Neat orderly rows can be found next to rambling, chaotic wildernesses.

It's the personal touch I like, the willingness to invite others in. The feeling that being outside mainstream sources of opinion, away from it all, is all about doing it differently, and better.

The beauty about blogging is you start with a bare patch of earth, like every gardener. It's entirely up to you what you do with it.

I've loved my time helping to tend the Ouch weblog, and I know I'm leaving a really rich allotment. But all things considered, this is more of a collective, a shared space, a community garden. And it's felt really good to be part of it.

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How does your garden grow?

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| 16:33 UK time, Friday, 10 August 2007

So I started a blog. Not a huge deal in the great scheme of things, but a big deal to me as it got me communicating again. Funny how communicating turns out to be a reciprocal thing. You give it a go and hey! People respond.

It's been a very gentle process. I needed it to be that way.

My blog is like an allotment. Allotments are really taking off again in the UK. Small patches of land away from the hubub of daily life, where you can go and grow things and reflect. My blog is where I go when I need time out. I tend it with the love I would pour into an allotment if I had the strength to garden.

Sometimes there are other 'allotment holders' to pass the odd comment with, whilst gazing vaguely at the virtual sky. Of course, I hasten to add, their allotments are often far busier and more exciting than mine. And I know a few of the people who pop by my 'allotment' may not appreciate the analogy. They are way too cool. But it's not all about flat caps and little potting sheds.

Blogging is about creating something, then nurturing it. A space to be tended as and when you feel the need. A place where you can find like-minded souls, and equally not so like-minded souls who can prove very fascinating.

It can feel like a solitary pursuit at times, but as you water and nourish and plan and expand your little site, it really can grow. And what starts out as a quiet corner with just you can turn into a regular turning over of more than just the basic earth. Ideas are formed, words are carefully trained, observations recorded and theories take root. There are appreciative exchanges, nods of recognition. On a busy day you may uncover as fierce a debate as you've seen anywhere.

Of course in moments of impulsivity, some people dig the whole thing up and start over. And some people stop tending their allotments, because it can be hard work at times. You can hit a difficult patch, weeds take hold, things don't grow as you'd hoped and it all starts to feel more like hard work than an escape.

But most people I know keep at it, and the rewards are many. A daily round of blogs can show you more of life in an hour than you can get in any other form of communication. Riots of colour sit alongside quiet, reflective corners. Neat orderly rows can be found next to rambling, chaotic wildernesses.

It's the personal touch I like, the willingness to invite others in. The feeling that being outside mainstream sources of opinion, away from it all, is all about doing it differently, and better.

The beauty about blogging is you start with a bare patch of earth, like every gardener. It's entirely up to you what you do with it.

I've loved my time helping to tend the Ouch weblog, and I know I'm leaving a really rich allotment. But all things considered, this is more of a collective, a shared space, a community garden. And it's felt really good to be part of it.

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"I'm not here to cure you." (My GP, Dr. Death)

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Elizabeth McClung | 05:10 UK time, Friday, 10 August 2007

I think becoming suddenly disabled should have cards and a gala event like weddings or a graduation. Or at least a pamphlet to hand out to friends entitled: “Your friend is disabled....get over it!” People tend to drop like flies the first few months when “so, you’re disabled” sinks into “Oh...you’re one of them. Call me when you get better!”

Friends and relatives often don’t “get it.” They have this idea that Disability Elizabeth is like a diet meal; pretty much the same but with a little less oomph.

Ways to tell that your friends don’t understand: They want to meet you in a pub that has five stairs to get inside; they want to go to a film and expect to sit together (your offer for them to camp on the floor in the wheelchair area is declined); after you fall face first onto the pub table and have to be revived with oxygen a friend tells you, “You’re not as fun to be around anymore.”; they keep asking, “When are you getting better?”; they suggest a stroll together, then meander so aimlessly they walk in front of your wheelchair several times plus go down a steep grade before saying “Oh wait, this isn’t the way”; when seeing you they ask, “Why don’t you stand up and walk, aren’t you tired of being in a wheelchair?” (that last statement was my ex-epee coach who believes illness is caused by weak willpower).

Elizabeth=disability. Was that so hard to remember?

Wait, shouldn’t I be saying, “I am not my disability?” Except I WAS my disability. My disability controlled everything: When I slept, how I ate, how I got around, what I could do and eventually even my personality. Know the saying “Good guys finish last.” There is another saying which comes from the wheelchair version of A Streetcar Named Desire, “I have always relied on the kindness of strangers......after I boldly and bluntly told them exactly what to do.”

During my second week using a wheelchair, I got a ride with my friends to the waterfront. Once there, they remembered another appointment. “But I just got here,” I protested. Oh, okay, they said, and then they turned and left. As I watched my ride drive away I thought, “Wait a minute, that’s not how the script is supposed to go.” Here I was, stuck away from home with a loaner chair borrowed from the Amityville Horror. The chair weighed over 35 pounds, and was so front heavy that when the sidewalk slanted it tended to run into the street. I couldn’t do wheelies to get over bad curb cuts and it had a habit of running into trees. Plus, I couldn’t brake with my hands yet or manage uphill (or downhill, hence the running into trees). But the friends who left didn’t know all that (though my frequent swearing at the chair might have tipped them off). They didn’t know how hard using a wheelchair is for the first weeks. All they knew was I was Elizabeth, you know, the super-fit, super-independent Elizabeth who didn’t “need” rides but occasionally “accepted” them. Except I wasn’t that Elizabeth anymore and though I was sitting in a wheelchair, they still couldn’t see it. And because I was still in “nicely nice” able-bodied mode I just watched them go.

Four weeks later I graduated to level one of urban wheelchair survival. I was in the mall and needed the elevator to go down a level in order to leave. But it was Saturday. The elevator came, it opened, and I patiently waited for people to make space for me. Cue able bodied people shoving past me to fill the space as quickly as possible. I waited for the next elevator. This happened seven more times. The eighth time, I said in a loud voice, “Coming through”, pushed forward (eyes fixed to floor) and left everyone else to guard their shins. That was the start of deciding I was going to have equal or needed access whether other people found it particularly convenient or not. And you know what; when you get a staff member to clear out the people at the pool who think the blue sign on the changing door means “Family changing and storage area”; they can’t actually make your head explode with dirty looks, no matter how hard they try.

Somewhere in all of this my therapist/friend told me a story about a woman with Lupus strangling a doctor with his tie (my friend knew the type of story I wanted to hear). The woman was in the hospital when the specialist came leading a crowd of doctors. The specialist pulled down the woman’s gown so he could show some interesting lesion development. To him the woman was merely the host of a particularly fascinating disease progression. She grabbed his tie, brought him face to face and reminded him that she was human and she expected to be treated as such. My therapist finished by saying that was the moment the woman took control and the disease no longer controlled her life, even though it eventually killed her. Like many therapist sayings, it sounded really profound until I tried to figure out how to apply it. I honestly sat at home saying over and over; “She controlled the disease, the disease didn’t control her.” What did that mean? If I got too hot, I passed out. If I wheeled too long, I was in bed for two days. How could I control it?

All during these months’ people would say, “Lucky you’re a writer, since you can write books at home.” But I wasn’t writing. Eventually I told Linda the truth: with the little time I was awake and the effort involved, I couldn’t find the motivation to write if I didn’t know whether I would be alive to see the work published. This was not helped by my GP (Nickname: Doctor D.) who met with me weekly to say, I quote: “None of us really knows how much time we have left”, “Any activity you do could kill you”, “It’s hard to say how many months you have left.” And my favorite: “I’m not here to cure you, I’m only here to help your quality of life (as you die).”

At some point, amidst daily medical tests and appointments I said “Fug it!” (I said something else but the BBC is a family site). I got up that morning and told Linda, “I want to go to Japan next year, maybe in the spring.” The next day I said, “I’m going to start writing again.” I wasn’t sure about the disease but I was going to be darned if I would let Dr. D. dictate how I viewed or lived my life.

So I was down, but at least I wasn’t out. And while I may not do as much as able-bodied Elizabeth used to, I can still do things. I may not have as many choices anymore, but I still have choices. I can still go to a film, or go to the park, or go shopping, have a meal out or go exercise; it just takes a week or two instead of doing it all in one day. Roll with it.

I started telling people, “I’m Elizabeth....and you better be wheelchair accessible.” Was this what my therapist had been talking about? When would I get to strangle a doctor? I was looking forward to that. It is not that all the medical crud had disappeared; it is just that I realized what it really was: a distraction. A few years ago I asked a friend to explain what living with AIDS was like. He said it was like living with a monster in the house. Now I knew what he meant.

Back to the medicals; another day, another specialist medical appointment. God, I’m tired. That’s when the Doctor said, “Live? Oh yes, you’re going to live, a lot of years.” (I experienced this hope against dread epiphany feeling which would have made a great end to this piece if only the doctor had simply SHUT UP!) She continued, “Of course,” she peers at my medical charts, “Do you want to really live that long? I dunno. Can’t say. Course, that’s my opinion, but in any case we’ll need to run some more tests....”

It looks like the monster and I are going to get to know each other really well.

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I don't look crippled enough!

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Jemma Brown | 22:02 UK time, Thursday, 9 August 2007

We walked in to a massive crowd of people, we tried to work out how to get in to the theatre, did a tour of the bar, lobby, and cloakroom and still had no idea were we where going. A door opened and finally a member of staff to tell us where to go but we got this response.

“Sorry we are short staffed today as you can see”

Me- “no we can’t actually that’s why we are asking you for help”

(Looking worried) ” oh right, I see erm … well I guess you should follow me “

This incident got me thinking about all the other times people didn’t realise my disability, admittedly I don’t always use a long cane but even when I do I often get hassle, I sometimes wonder weather its because of my age.

Take a bus for example I very rarely sit in a priority seat, but if the bus driver is a maniac or my joints are playing up, and its that or fall flat on my face I go for it. But despite having my long cane and florescent orange buss pass on show I still get dodgy looks and have even experienced being sat on by a rude person who didn’t think I looked needy enough to sit there.

I use a long cane, have a slight limp, wear a hat my entire life, have very thick glasses and have very wobbly eyes, that not a big enough clue?

Obviously not for my GP reception who, after I had worked out that the board did say my name informed me that they didn’t realise I needed help, it wasn’t on my notes that I’m partially sighted. you can read more about my infurationg visit to the GP here

Then there was an interesting incident in the London dungeons it was dark and I was about to go on the ride that simulates being hung, I was told to put my long cane down take of my glasses and then sit over there, it was very dark, I could not see, how the hell was I supposed to no where to go, I stood and got an arm to attach to. I must add that the staff where really nice and even brought my long cane back to me when the ride had finished. They just didn’t think ‘a person who is visually impaired, maybe we should ask if they need help’.

On the other hand if service providers ask if I/we need help, is that them being helpful, inclusive and understanding or is it a patronising attack on our independence?

Now there’s a question.

I think it depends on the situation and the ability for the service provider to accept a “no I’m fine thanks”. It is annoying when shopping for a new bra and the shop assistant comes over to offer help, I say I’m fine thanks very much and they still loiter watching me survey there lingerie. On other occasions, whilst trying to find platform 5274… at Victoria station I defiantly want help!

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10 Favourite Disability Quotes

Dave Hingsburger | 17:04 UK time, Thursday, 9 August 2007

I love quotes. i have books and books of quotes. Recently I went looking for quotes about disability by those either with disability or who have thought deeply about disability. I've now got over 300 quotes set aside. Here are 10 of my favourites, I'm guessing there might be others who are quote addicted like I am.

Rebellion against your handicaps gets you nowhere. Self-pity gets you nowhere. One must have the adventurous daring to accept oneself as a bundle of possibilities and undertake the most interesting game in the world - making the most of one's best.

Harry Emerson Fosdick

There are two kinds of “disabled” persons: Those who dwell on what they have lost and those who concentrate on what they have left.

Thomas S. Szasz

You know the hardest thing about having cerebral palsy and being a woman? It’s plucking your eyebrows. That’s how I originally got pierced ears.

Geri Jewel

Although there are many barriers facing people with disabilities today, the single greatest obstacle we face as a community is our own sense of inferiority, internalized oppression and shame.

Sarah Triano

Suicide prevention for you, but suicide enhancement for us. … Society wants the disabled community to have access to a dignified death when we want access to a dignified life.

Gregor Wolbring

… if I have a bad day, it's all over. It's always because of my disability. "Oh, that poor girl, she's upset because she has a disability" and I'll say, "No, I'm upset because my boyfriend left me." "Oh, because he couldn't deal with the disability?" "No, because I slept with his best friend".."Oh, you slept with his best friend because you were feeling bad because you have a disability.”

Ellen Stohl (first playboy playmate with a disability)

I like to shop at factory discount stores. Clothes marked irregular fit me fine.

Brett Leake

I dropped a hammer on my foot. I said, ouch, I bet that hurt.

J.D. England

I know it's not politically correct to call myself handicapped. I'm supposed to say physically challenged or developmentally disabled. But I don't have that kind of time.

Chris Fonseca

On my income tax 1040 it says ‘Check this box if you are blind.’ I wanted to put a check mark about three inches away.

Tom Lehrer

I'm curious, anyone else have a quote they like???

• Visit Chewing The Fat

Ouch at the Edinburgh Fringe #2

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Kate Ansell | 21:32 UK time, Wednesday, 8 August 2007

Hello again.

I wasn’t sure you’d believe I really AM in Edinburgh, so here are some photos to prove it. It must be Scotland because here are some men with bagpipes. And it’s certainly the Podcast because here’s Mat Fraser outside BBC Scotland.

Woo!

If you go to Ouch's Flickr page, you can see me attempting to get into a tent on a building site to hear Liz Bentley’s set. Luckily for you, she’s going to play us out of the Edinburgh Podcast, so you can listen to her without that particular feat of endurance – and as an added bonus she’ll explain just for you how it came to pass that she was in that tent in the first place.

Plus, comedienne Tanyalee Davis will be helping Mat and Liz guess the disability in Vegetable, Vegetable, or Vegetable. Contestant this month is our new guest blogger Jemma. Tune in to discover if her disability is fiendishly complicated enough to fox them even with such special assistance.

Plus, plus ... Ooh, lot’s of stuff. We’ll be asking our Edinburgh performers to vote for their favourite ever crip jokes in Joke Box Jury. Do be sure to email us if you think you can do better ...

We’re bursting with guests including the gorgeous American Lynn Manning, who’s so good looking he got mistaken for Samuel L Jackson on his first night here, apparently.

You’re just going to have to listen for yourself, no?

Right, I’m off to try and persuade EasyJet to let me pre-board. Wish me luck.

More from Kate Ansell on Ouch

Vancouver Pride '07

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Zephyr | 10:33 UK time, Wednesday, 8 August 2007

On Sunday I marched in the Vancouver Gay Pride Parade with my boyfriend. That sentence sounds all wrong to me. First of all, I marched metaphorically, as I was being pushed in a manual wheelchair. Secondly, although I was with my boyfriend, I'm bisexual and I have a girlfriend as well. In fact, I'm actually a rare bird, a Kinsey 3, which means I'm 'pansexual.' No, that doesn't mean I'm attracted to pans or Pan, it means I'm attracted to all genders and combinations of gender. Gender really doesn't matter to me, I've dated men, women and transgendered people. It's all good to me.

So, my boyfriend was there, but he was escorted by myself and his other girlfriend, who happens to identify as a bisexual lesbian. Boyfriend also gets teased a lot for being gay in everything but what he does in the bedroom. So I figure he's queer enough to march in the Pride parade, or at least queer enough by association to escort his bisexual girlfriends.

My friend Ms. Pet was there making signs with crazy disability and sex political slogans. She carried a "Depraved Disabled Dyke" sign and made a sign for me that said "Kinky Queer Cripple" on one side and "Bisexual Pride" on the other. The disability slogan didn't get much of a crowd response, but the Bisexual Pride slogan sure did. Quite a few women nodded, smiled, gave thumbs up, and cheered when they saw my sign.

Our group had a number of disabled folk, as we were marching with the local LGBT centre, which includes Chronically Queer, a group for LBGT folks with disabilities. I discovered last year that one can be every bit the crowd-pleaser from a wheelchair as the bipedal marchers. Last year I was marching with Bi Girls Vancouver, and I was really excited about it. Marching with a government centre just didn't have the same emotional impact, so I was more casual and last-minute about things.

Scratch was having a bit of a rough time navigating the crowds after the parade and pushing the chair at the same time. He became very frustrated at how oblivious people were at noticing the wheelchair. It also annoyed him that people were so painfully slow in getting out of the way for us. I'm so used to it that I don't even notice it anymore. I'll go out on a limb here and say that folks with disabilities have developed patience and endurance for that sort of thing. I became a little annoyed with Scratch for not actually giving people time to get out of the way before barking at them, and I told him so. I'm pretty used to having to say 'Excuse me' a couple of times to TABs before they moved out of the way.

Scratch was also frustrated because we couldn't run to catch the bus, although he did try. I was not impressed. In fact, I had a raging panic attack when he ran pell-mell with me in front. I was horribly afraid I'd go flying out of the chair at any moment, which was a possibility. I told him sternly that he is never to run with me in the chair ever again.

Scratch says he needs some time to adjust to me being in the wheelchair. He doesn't have a problem with it, but it's hard for him, watching me be marginalized because I'm using a wheelchair to get around sometimes. He had the same issue when I started to use the canes. He says it made him crazy watching people get in my way, not stepping aside for me, blocking off entrances and sidewalks, and treating me like I'm invisible in general. Welcome to our world, sweetheart.

• Visit Arthritic Young Thing
*May contain adult content*

Hey there!

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Wheelchair Dancer Wheelchair Dancer | 04:36 UK time, Wednesday, 8 August 2007

My introduction to physically integrated dance was at a conference. I was there for, well, a number of professional reasons, but I was really there to meet other disabled people in a professional context. I was new to the whole disability thing; it was just dawning on me that I was going to have to learn to live with this stuff, and I was not a happy camper. Everyone around me was psyched about the evening entertainment. There was going to be a dance performance by Homer Avila. I was more than a little uncertain. "I mean, really, how does a one-legged man dance?" I snorted. "Was he just going to lie on the floor and wriggle?" My snotty attitude was changed that night; I was invited to take part -- to read the words of a script as Homer danced. And dance he did. Here's Homer on YouTube: with SmartLab and on his own.

In the bar afterwards, I connected with Homer. We talked and talked and talked: art, music, performance, disability, philosophy, and loss. It was probably only for 45 minutes or so, but that three quarters of an hour was world changing. Homer was intense; he leaned over and began to give another conference attendee a dance lesson. He looked back at me, reinforcing the dare he had issued just seconds before. I shrugged it off. Dance lessons. Later. Whatever. Of course. But for Homer, there was no later; he lived another 6 weeks. It was only 45 minutes, but I was deeply touched by Homer; his death rocked me to the core. I was determined to pick up my lazy, self-pitying self and live a little as he had lived: to the full. I looked for dance classes; there were none in my area. I moved to the San Francisco Bay Area for research work and happened upon a flyer advertising integrated dance. The sequence of events from here is a little murky. I took only 8 classes, and I was hooked. How to explain? Dance changed the way I experienced -- understood -- my body. It's kinda like this. In the every day world, I am conscious of the fact that I am using a wheelchair; I'm watching for bumps in the pavement, people who can see the chair and not me, .... you get the picture. In the studio, I am a dancer.

I am a dancer. It surprises me still to write that. I am a dancer not because life threw me a curve ball and I made lemonade from it (if you see what I mean), but because dance speaks to my very heart. Like all dancers, I train, I practice, I take classes, I go to rehearsal, I perform, I work, and I experiment with my chair. I am a dancer. My work takes a number of forms. First, there is my daily routine. I am just coming off a number of injuries (AC separation and a bunch of hip/sacro-iliac stuff), so I have had to develop a new routine to strengthen, take care of, and nurture my body. I begin with 30 minutes of qi gong -- developed by for people who work with their hands. In this sequence, I focus on breathing and on warming up everything from my fingers to my neck and spine. Then, as I get looser, I might add some elements of movement from classical ballet and Horton technique. Most of this work is about strengthening and loosening. I am concentrating on breathing and lifting my arms or breathing and turning my body. I don't do much with the chair at this point. Chair work probably requires a whole different post. If I am feeling adventurous, I might go on to do some proto-pilates work (core strength being the goal). On a non-injured day in New York, I would probably skip this part and go straight to class; I take beginner or advanced beginner ballet and intermediate Horton/mixed style modern at regular studios. In California, I am still working on finding a place that is not too weirded out or too far away -- I'm keen, but not so keen that I like to drive for an hour both ways in order to take a 90 minute class. There are limits.

Then, it's off to rehearsal! West Coast Dance is an awesome company to work for -- and not just they may be reading this. In my year and a bit, I have worked with some really high-profile choreographers and created some stunning work. I am really proud of what we do. Yes, we blow people's minds; see us and weep (if you are one of those pity the disabled types). Yes, we have disabled and non-disabled dancers working together, equally. We're role models; we're inspiring (insert roll of eyes), ... but I don't notice those things on a daily basis. I notice the work. I notice that we produce interesting, challenging work that is on a par with the dance of other modern companies. I notice the power, beauty, and grace of my colleagues; they're pretty awesome people and amazing dancers. I see how the fragments -- "just walk backwards and forwards, please" -- become a foundation for style and movement. I see and hear my colleagues breathing. The sounds of their wheels, prosthetics, feet. I see an arm, a leg, a shape. Hear a rushing towards me on the lift of the music. I push off from the wings out into the space; it's time to go.

• Visit Wheelchair Dancer. I am looking forward to hearing from you.

Phew. That was nerve-wracking. Grin.

WCD

Brave Special Different

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Jemma Brown | 21:18 UK time, Tuesday, 7 August 2007

Well hello, this is my very first blog entry for Ouch so I thought I should introduce myself, and relive the immense stress caused to you all by leaving you in suspense concerning my disability. I must add that I couldn’t disclose it before due to the fact that I shall be appearing on podcast number 18’s vegetable, vegetable or vegetable quiz. I have a number of highly interesting things wrong with me witch tend to be at the heart of many a blog entry, my main disability is that I’m partially sighted, but I got lots of other stuff going on witch to be quite frank I cant be bothered to bore you with right now, if your that interested listen to podcast number 18. (witch should be out soon)

When my friend Dan writes my biography for me it shall be entitled “Brave Special Different” this is obviously due to my tragic life as a poor cripple and is based on a number of conversations I had with my friend and it all started when I expressed my disgust at a particular incident!

It was the first time I had ever played goalball, at a sort of have a go day style event I was loving it I was surrounded by loads of VI people having fun and getting to hit them with a large and very hard ball. At a break in play a man started talking to me. I cant actually remember but I think his name was Brian, he started asking questions about my eye condition, I mentioned that it’s a genetic thing my mum, auntie and cousin all have the same condition at this point he randomly comes out with “ your very brave”. What??? Where the hell did that come from? There I was minding my own business and I get called brave, in public by a man I don’t even no, surrounded by mates. What makes it worse was that it was me that was labelled as brave just because some members of my family are also VI and at the time when the offence was committed I was stood next to my mate Mat who has no eye’s for god sake!

When mentioning this particular incident to Dan, we started a very in depth discussion about all the different things I had been called that where actually intended to be ‘nice’ but where actually incredibly patronising, second only to the brave incident is the word ‘special’ I have been referred to as special more than any other ‘nice’ word. At school I used to go to ‘special provisions’ to get extra support with handwriting and spelling. I have written on ‘special paper’ used a ‘special calculator/liquid measure/weighing scales’. It’s not special its just yellow lined paper ‘different from yours’, would normally be my response. If anyone ever dared to describe me as special directly I don’t actually think they would live to tell the tale.

The different bit of the title refers to me, so I’m different from the average normal, but if we where all normal’s then wouldn’t life be boring. From a different perspective it also reflects the fact that a lot of everyday tasks I do in a different way, still have the same end result but my method might be slower but easier for me.

In fact due to recent events it nearly became ‘brave special different sweetheart’ this was due to a pharmacist who was just doing her job but said to me when I went to get my first ever anti-depressants “sweetheart if you feel suicidal don’t” witch was a very odd experience at the time but not quite as legendry as the others.

Don’t even get me started on the term ‘differently able’ …

• Visit Diary of a Monkey

The PA - Disabled Person Relationship

Nicola | 21:12 UK time, Tuesday, 7 August 2007

The exchange below is based on bits of conversations with my new PA, it is, I feel, the very spirit of Independent Living. Or not.

Before you say anything, I don't actually call them PA. Nor have i chucked metal objects at them. Yet.


PA: Where's your metal cutlery holding thingy?

Me: Aw, my mum coerced me into buying it on our start-of-term ikea trip. I never liked it, I could have bought swedish meatballs for that money.

PA: That doesn't explain why yesterday it was draining your forks and today it's gone.

Me: Listen, PA, I'll be straight with you: I've hidden it.

PA: Hidden it?

Me: Yeah, it's out of my reach on the sink like that, out of my reach to grab knives for impromtue late night cheese eating anyway. If I hide it y'all can't put stuff in it.

PA: You could have just told me to dry the cutlery and put it in the cuboard.

Me: Yeeeeah but then I'd have to tell all three of you, and I can't be arsed. Yeah, you are tea-cooking PA, monday-sunday, and darn good you are too, but what with the cheese eating n'all, morning PAs wash up too.

[Pause for breath]

Me: I'd rather remove all possibility of you using cutlery thingy than say, on an off day, be tempted to throw a fork at you for using it by accident because it was still on the draining board. It was starting to truly annoy me. More than Sarah Beeney, and I hate Sarah Beeney.

PA: Who?

Me: Propety show presenter, wonky tits, in my opinion.

PA: I don't have a TV in this country, your TV licence is stupid [PA is American]

Me: Not as stupid as having your news reports written by Disney...

(carries on until roughly 7pm)

I Predict A Riot

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Seahorse | 20:17 UK time, Tuesday, 7 August 2007

Today my son and I visited the Botanical Gardens. It's a place I've been on occasion recently, as they have acres of green space, a very cool cacti collection, peacocks and mobility scooters.

My son hasn't seen me with wheels before, as we are currently in a complex Wheelchair Service vs Social Services wrangle. Ramps needed before chair, chair needed before ramps. That sort of thing. Boring.

Today was anything but boring. I knew we were going to go out. I'd planned it, rested for it and was determined it would be just him and me. A friend dropped us off. I went to reception and asked for the key for the scooter.

"So there's three of you today?" the lady asks, looking at my son. There's clearly just us two. It's only writing this now that I clock Negative Assumption No 1. "You can't be responsible for a child. You are disabled. Where's your carer?" But you know? I didn't pick up on it at the time. A combination of inexperience and intoxicating excitement got the better of me.

The thing is with intoxicating excitement, it's catching. And it can lead to inappropriate and even riotous behaviour. Seated on the scooter, I failed to concentrate and hit reverse at full speed. Clunk. My son creased up. And there was I, hoping to calmly introduce him to the notion of my wheelhood. No chance. Off we went.
"Get the gate! Quick!"
"What gate!"
The gate that allows disabled people to enter the gardens only if they get off their scooter and open it or ask a carer to open it.
"That gate!" Clunk. My son steps right in front of me and I bump into him. He cracks up. This sets the tone for the whole excursion.

"Let's get lunch," I suggest in an attempt to restore order.
"Okay."
Huge queue. Swarms of toddlers. No space in the queue for scooters. Hmmm.
"Tell you what. Here's a tenner - grab a couple of sandwiches and drinks. I'll wait outside."

Bad wheelchair lady (couldn't possibly be his mother, surely) leaving that poor
boy in the queue.
So I'm outside, worrying. Damn their crappy layout. I can see my son, so call him over.
"Forget the tenner, we need it for the taxi home. Just come and get me when you get to the checkout."
"Okay." Grin.
Checkout. My son has an egg sandwich for me and the biggest piece of chocolate cake ever for himself.
"Where's your sandwich?"
"The sandwiches here make me puke."
"Oh."
I wince and grin apologetically at checkout boy. He doesn't smile back. My scooter is blocking the path to the kitchen. There is nowhere else to put it. Waiters are swerving around me like I'm a traffic island.
"You need a better lunch than that. What else is there?"
There is nothing else.
So I get my card out and pay.
"Uh, mum?"
"Yes?"
"I think it's coffee cake."
"Great."
The cake is exchanged for a scone. More waiters are weaving around me.
My son picks up our tray and I reverse. Into a waiter.
We both crack up. Then we head outside. The ramp is being blocked by a man fiddling with his camcorder.
"Excuse me. Excuse me."
Lost in a fortysomething technotrance, he stands there oblivious. So I reverse. Around him, down the ramp, around the corner and straight into an ice cream sign. By now, we are in bits. People on the terrace stare. It was quite an entrance. We start lunch. My sandwich is off (my son was right).
"Wait there."

Back into the scooter. Now this wasn't entirely necessary, as I could have walked just up to the caf&eacute, but by now I had the devil in me and needed to demonstrate how bad their layout is.
"This sandwich is off. Can I exchange it?"
The manager looks down at me. I continue.
"Could you get me another one, please? I can't get to the display fridge because of the queue. And could I have cheese? I don't want to chance it with another egg mayo."
I smile sweetly.

Back outside, my son drops his scone on the floor. At this point, every new disaster only prompts helpless mirth. I knock the knife intended for his scone flying. People are looking at us. We are purple with trying to suppress our giggles. Disabled Person and Child in Mirth Shocker!

After 'lunch' we set off for the gardens.
"Will you always need one of these?" he asks.
"Well, you know they can't tell how long I'm going to be ill, so I need one for as long as I can't do things like today unless I am sitting down." Gulp.
"How fast does it go?"
"Quite fast. Fancy a race?"
Three elderly ladies seated on a bench look up in synchronised surprise.
We hurtle off into the distance, me at full throttle, my son running and laughing beside me.

• Visit The Beauty Offensive

I Predict A Riot

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| 20:17 UK time, Tuesday, 7 August 2007

Today my son and I visited the Botanical Gardens. It's a place I've been on occasion recently, as they have acres of green space, a very cool cacti collection, peacocks and mobility scooters.

My son hasn't seen me with wheels before, as we are currently in a complex Wheelchair Service vs Social Services wrangle. Ramps needed before chair, chair needed before ramps. That sort of thing. Boring.

Today was anything but boring. I knew we were going to go out. I'd planned it, rested for it and was determined it would be just him and me. A friend dropped us off. I went to reception and asked for the key for the scooter.

"So there's three of you today?" the lady asks, looking at my son. There's clearly just us two. It's only writing this now that I clock Negative Assumption No 1. "You can't be responsible for a child. You are disabled. Where's your carer?" But you know? I didn't pick up on it at the time. A combination of inexperience and intoxicating excitement got the better of me.

The thing is with intoxicating excitement, it's catching. And it can lead to inappropriate and even riotous behaviour. Seated on the scooter, I failed to concentrate and hit reverse at full speed. Clunk. My son creased up. And there was I, hoping to calmly introduce him to the notion of my wheelhood. No chance. Off we went.
"Get the gate! Quick!"
"What gate!"
The gate that allows disabled people to enter the gardens only if they get off their scooter and open it or ask a carer to open it.
"That gate!" Clunk. My son steps right in front of me and I bump into him. He cracks up. This sets the tone for the whole excursion.

"Let's get lunch," I suggest in an attempt to restore order.
"Okay."
Huge queue. Swarms of toddlers. No space in the queue for scooters. Hmmm.
"Tell you what. Here's a tenner - grab a couple of sandwiches and drinks. I'll wait outside."

Bad wheelchair lady (couldn't possibly be his mother, surely) leaving that poor
boy in the queue.
So I'm outside, worrying. Damn their crappy layout. I can see my son, so call him over.
"Forget the tenner, we need it for the taxi home. Just come and get me when you get to the checkout."
"Okay." Grin.
Checkout. My son has an egg sandwich for me and the biggest piece of chocolate cake ever for himself.
"Where's your sandwich?"
"The sandwiches here make me puke."
"Oh."
I wince and grin apologetically at checkout boy. He doesn't smile back. My scooter is blocking the path to the kitchen. There is nowhere else to put it. Waiters are swerving around me like I'm a traffic island.
"You need a better lunch than that. What else is there?"
There is nothing else.
So I get my card out and pay.
"Uh, mum?"
"Yes?"
"I think it's coffee cake."
"Great."
The cake is exchanged for a scone. More waiters are weaving around me.
My son picks up our tray and I reverse. Into a waiter.
We both crack up. Then we head outside. The ramp is being blocked by a man fiddling with his camcorder.
"Excuse me. Excuse me."
Lost in a fortysomething technotrance, he stands there oblivious. So I reverse. Around him, down the ramp, around the corner and straight into an ice cream sign. By now, we are in bits. People on the terrace stare. It was quite an entrance. We start lunch. My sandwich is off (my son was right).
"Wait there."

Back into the scooter. Now this wasn't entirely necessary, as I could have walked just up to the caf&eacute, but by now I had the devil in me and needed to demonstrate how bad their layout is.
"This sandwich is off. Can I exchange it?"
The manager looks down at me. I continue.
"Could you get me another one, please? I can't get to the display fridge because of the queue. And could I have cheese? I don't want to chance it with another egg mayo."
I smile sweetly.

Back outside, my son drops his scone on the floor. At this point, every new disaster only prompts helpless mirth. I knock the knife intended for his scone flying. People are looking at us. We are purple with trying to suppress our giggles. Disabled Person and Child in Mirth Shocker!

After 'lunch' we set off for the gardens.
"Will you always need one of these?" he asks.
"Well, you know they can't tell how long I'm going to be ill, so I need one for as long as I can't do things like today unless I am sitting down." Gulp.
"How fast does it go?"
"Quite fast. Fancy a race?"
Three elderly ladies seated on a bench look up in synchronised surprise.
We hurtle off into the distance, me at full throttle, my son running and laughing beside me.

• Visit The Beauty Offensive

Ouch at the Edinburgh Fringe

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Kate Ansell | 12:12 UK time, Tuesday, 7 August 2007

Greetings punters!

Coming at you live from a mediocre hotel room, I’m in Scotland with Mat Fraser and Liz Carr, soaking up the disability highlights at the Edinburgh Fringe Festival and preparing an al fresco podcast for your delectation.

I’m having so much fun walking up and down the hills of Edinburgh and clambering into inaccessible venues that I had to send the access facilitators out for plasters yesterday morning.

But it’s all so you don’t have to, Ouchers. I’ve been here for a few days picking out the cream of disabled performers, and we’re cramming them all into one podcast just for you, which will be online for your dedication by the end of the week.

Assuming we don’t miss our flight, that is. Wish us luck.

More from Kate Ansell on Ouch

Snorting industrial cleaner; just say 'no!'

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Elizabeth McClung | 03:36 UK time, Monday, 6 August 2007

People always ask me “When did you have the accident?” which to me sounds as if I am 16, waif thin and obviously pregnant. Oh, you mean the wheelchair! There is no simple answer, but I often think of what was said to Winston Churchill, “I believe you are drunk...” no wait, I think it was another saying about a mystery wrapped in an enigma. So no, I am not paraplegic nor did I fall from a tree while stalking the Queen Mum. I have a heart/neuro degeneration thingy. This is uncommon. But then I am finding out that there are many “uncommon” medical paths. There is MS, ALS/NMD, Lupus, Lyme disease, Parkinson’s, Encephalitis, G-B Syndrome, Creutzfeldt-Jakob and PML. And these are just some of the neurological; there are dozens of ways to win the disability lotto, some temporary, some permanent. And it isn’t because you smoked or drank, or stopped too often to smell the roses; it just happens. That really frustrates doctors. Some of my many doctors are convinced that I did ‘something’, probably ‘something’ like snorting industrial cleaner, to end up like this.

Have we established that I am the “could be any woman” yet? That I was a walking Temporarily Able Bodied and didn’t even know it? I hope so, because medical talk is dull. What is interesting are all the incredible things people will simply come up and say or do if you are in a wheelchair. Like my first bus ride (actually my second as on the first one the driver refused to pick me up) when I, in wheelchair, am on one side of the bus, and a woman with Down’s Syndrome is on the other. She is going to work at the Red Cross, I am going home. A “caring” woman decides to talk to “the disabled” and does the slow, slightly loud “And how are you, dear? That’s nice dear!” which some people believe to be the universal language of disability. The woman with Down’s and I are both slightly vexed that “caring woman” cannot tell us apart. I am in a wheelchair, she isn’t. She has, as she slowly explains to “caring woman” both a job which makes money and a boyfriend (I have a girlfriend and my contribution most days is recycling carbon with my lungs). But “caring woman” doesn’t listen and goes on with the inane questions. So we ignore her and end up talking to each other. It is an easy conversation since she works at Red Cross which loans medical equipment and I have about 30% of their inventory in my apartment. Seriously, the Red Cross truck drivers wave to me as they drive by.

I’m not going to tell you all about what made me special as an able bodied person because those were the “before” values. Values of a society that I can’t meet anymore, and got quickly tired of trying to. Now, I try to get outside every day. I try to do some sort of exercise twice a week (currently that is wheelchair boxing). I work at not letting how well or bad or in pain I feel on any day or series of days determine my outlook. Still every month there are conversations with my partner Linda like this:

Me: “I’m cured! No really, I feel completely normal.”


Linda: “And how long have you been ‘cured?’”

Me: “Five hours.”

Linda: “Hmmm….”

NEXT DAY

Linda: “I’m pretty sure you don’t want EVERY human to spontaneously combust.”

Me: “Yes I do, I hate them all!”

Linda: “You’re in pain, aren’t you?”

Me: “Pain! Do you know how many nerve connectors go to the spinal cord? One billion!”

Linda: “You want another pill?”

Me: “Know how I know...I’ve been counting them!”

Linda: “Take the pill.”


Every time I give those little snapshots of my life people email me wanting to tell Linda how much they admire her.

The other thing I do is try to understand or at least record the way in which I and society bump up into each other. Like how a lot of women are randomly getting all maternal on me. I have 21 year old girls asking “You okay, sweetheart?” This is pretty odd for someone who is over 6’3”, has an athletic build and has been more used to short men coming up and asking me to spank or dominate them. So no, I’m not exactly ‘delicate.’ But when women ten years younger and half my size want to stroke my hand....I say YES and I don’t tell Linda but I’m still confused. And let’s not get into the women five to ten years older than me who hold me and say I remind them of their daughter. That’s a compliment right, I think?

I shouldn’t forget mentioning the benefits. As I said today to the woman painting the henna tattoo on my body, “The old rules don’t apply.” There is nothing like traumatic life-altering medical problems to help demolish that mental 12 volume set of “What Good Girls Do.” Are all girls who wear thong underwear really tramps? Let’s order some and find out. A lot of my social concerns disappeared once I had something nastier to fear. I dress goth now, or wheelchair goth (always thought it was cool, always too scared to try). My female physiotherapist calls it “prostitute wear” after I showed up in a miniskirt asking her to alter my wheelchair footplate for high heeled knee-high boots with buckles (PVC boots). But hey, she was the one who told me it was “impossible” to wear a miniskirt in a wheelchair. That’s a challenge, right? Besides, her 19 year old daughter comes to me for fashion tips. People will try and tell you that “Junior miss” sizes are not for wheelchair women in their 30’s. I disagree; my clothes come from Sweet and Toxic, Morbid Threads, Slash N’ Burn, Arsenic, Lily and Remains, Trick Fairy, Kill City, Darque, and Demonia. Plus I have a vampire teddy bear in his own mini velvet-lined coffin. Cool, huh? Remember: the old rules don’t apply.

So that’s it; the quick 101 on Elizabeth McClung, disability blogger. I hope you weren’t looking for dignity or sensitive insight. Good.

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This post is stunning, beautiful, you want to be this post.

Nicola | 13:52 UK time, Sunday, 5 August 2007

Today, as my dissertation takes wobbly shape, I was thinking about my school and university career. It is littered with gushing, hyperbolic teachers as well as honest ones. The impact exaggeration has on our self-image is a complicated issue, I think, particularly for youngsters. How, really, can you understand yourself when most or part of what you had fed back to you was either inflated or false, conditioned by a need not to hurt our crippled feelings?

Not all of it is conscious, of course, I think a lot of flattering but dubious opinions on my own schoolwork was born out of the low expectations my teachers started with. If, from rock bottom, they reached higher than they imagined then their awe at that jump would be totally genuine. But only to them, ‘brilliant’ or ‘genius’ (I kid you not, year 8 and year 12 English teachers) count for nothing if they have designed a new, dirt-level, standard to define them by. The Single Disabled Pupil Standard.

I realise I am going to stray into reckless self-deprecation if I taken this point any further. That’s hollow, no use to anyone, least of all the people that have to listen to it (you know who you are and I love you). But for the things in life where our impairment should not be a factor, we should be measured by one standard and one standard only.

If not, we might as well be a different species; being a different species and believing you’re a human being would distort your self-image to say the least. Buzz Lightyear thought he was a human, the world thought he was a toy, and he was heartbroken no matter what Tom Hanks did or said. So, non-disabled land, if you don’t want an army of hobbling, whirring Buzz Lightyears on your hands, stop being amazed by disabled people and start being honest. Because I can’t see Tom Hanks anywhere nearby, can you?*


*Tom Hanks when he was Woody The Cowboy in Toy Story, not the calliper-clad dude with the intellectual impairment.

Desperate measures

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Lady Bracknell's Editor | 18:36 UK time, Wednesday, 1 August 2007

I’d be the first to agree that disabled people in the UK, despite what the DWP might claim, really don’t have equality of access to employment. Anyone who says different is either very lucky; not disabled; or a government spokesperson with an agenda. Frankly, even if you have a diversity-aware employer, and full reasonable adjustment, your chances of advancement within your chosen career are pitifully low compared to those of your non-disabled colleagues.

But I’m not complaining. Not today. And I don’t think you will be, either. Not after reading this .

Yesterday, twelve disabled men in Varanasi, India, publicly drank pesticide in a desperate protest against the city administration which had taken over their shops. Without those shops, the men had no way of making a living. This morning, five are dead and the remaining seven are in critical condition.

This is what Tribhuvan, one of the protesters said to a journalist:

'' The administration said they would listen to our demands within 24 hours. But even after two days nothing was done. We had said give us space so we can earn a living. But the municipal officer said even if you poison yourself we will not listen and we will demolish your shops. So to give them a little happiness we consumed poison''.

Tribhuvan died in hospital a few hours later.

Whatever the ins and outs behind this story – and it only appeared online an hour ago, so there hasn’t been much opportunity for a rebuttal as yet – disabled people have died because their way of earning a living was taken away from them.

Ok, so there are news items from around the world on an almost daily basis which report the discriminatory treatment of disabled people. If you wept every time you read one, you’d risk drowning in your own tears. But this is the worst one I’ve seen for a while. And, distressing though it is, I think it merits the widest possible coverage.


• Visit The Perorations of Lady Bracknell

Denial

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The Goldfish | 10:39 UK time, Wednesday, 1 August 2007

This is subject raised by Dave's post Password, and Imfunnytoo in her recent post Denying Denial. Imfunnytoo writes:

I’ve seen parents with children with impairment admit that for most of the first ten years after diagnosis:

“I just went to sleep every night and prayed that when I woke up in the morning, they would be ‘normal.’”

That puts expectations on the kid that are next to impossible, not to mention effort by the parent that should have included acceptance of the kid as is, and searching for support systems so both the kid and themselves don’t go bonkers…

Personally, I spent an age in denial about my illness. My prognosis was always uncertain and as such, I assumed that it was a matter of time and effort - positive thinking, careful attention to diet, exercise and rest - before I entered a permanent and complete remission. Everyone around me was only too pleased to support this idea and even after I had been ill for years and the situation had in fact deteriorated, my attempts to talk frankly of this were met with pleas that I must not give up hope!

Eventually, I noticed that my courageous outlook, my heroic refusal to admit defeat, was actually putting my life on hold. Meanwhile, I had to live with my spectacular failure to will myself back to good health. It took a different kind of courage to face facts and get on with life as it was. Recognising myself as disabled was a big part of that; recognising the difference between my uncontrollable limitations and the limitations that I could actually do something about.

In the comments to Dave's post about a wheelchair-user who declared that he was not disabled, Chris Page wrote:

It's an awkward situation, granted - coming to terms must be difficult - but I wonder whether some newly-disabled people understand how insulting such sentiments are to those of us who were born with "impairments"? Do they think they're too good to be Disabled?
I wouldn't have said so had I been asked at the time, but I suppose there was an extent to which I saw disability as some sort of surrender. Whilst there is sometimes a preference for words other than disabled or disability, there is also the belief that our particular shared experiences shouldn't incur any label at all. When Adam Hills railed against the term disability he concluded;
Here's what I think. I think there is an easy and foolproof way to determine whether or not someone has a genuine disability. Simply ask them whether or not they consider themselves to be disabled. If they think they are, they're probably not.
It's not that Adam thinks that he is better than other disabled people, but that disability is about inadequacy, an excuse for someone's personal failings. According to this definition of disability, he is undeniably too good to be disabled and indeed, most of us are. I'm sure that at one point, I might have agreed with him.

These days, I'm afraid I think of the scene from the film Brokeback Mountain where having fallen in love and vigorously consummated their passion, our two heroes insist to one another that they are not queer. Where queer is a carries wholly negative connotations, people who would be classified as such by others are inclined to resist the label. However, where queerness or disability is understood as a social and political status as opposed to something that's wrong with an individual, there is no longer any shame attached.

Seahorse wrote an excellent post about this last month in Daring to Disagree where a friend took issue with her describing herself as disabled, as if this was a sign of despair. Readers may also be heartened to read the outcome to that particular incident.

• Visit Diary of a Goldfish

Inspirational Blogging

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Zephyr | 00:39 UK time, Wednesday, 1 August 2007

Several friends have told me that my disability blogging has been an inspiration to them. No, not the kind of patronizing ablist inspiration that we're all used to getting from the non-disabled members of society. Nope, my blogging has directly or indirectly inspired several of my disabled friends to start their own disability blogs. Cool, eh?

It all started with Ms. Pet. About a week after I started Arthritis Young Thing, she started a blog named White Trash Femme, which is now defunct. Currently, she runs Sexability, a site dedicated to exploring disability and sex. Warning: Site contains adult content, Not Safe For Work, and as Ms. Pet says, "May offend everybody at some point."

Then Ms. Pet and I were contacted by a local who found both our blogs and really enjoyed them, being a chronic pain sufferer as well. Now she's started her own blog, Chronic Holiday, a humorous collection of all the well-meaning and not-so-well-meaning things the able-bodied have said to her over the years. I'm sure we'll all relate, and roll our eyes, and feel like kicking someone in the shins as we read these snippets.

And finally, we have Girl Anachronism, whom I forced to sit down and read the latest Disability Blog Carnival on Arthritic Young Thing. Hey, I knew she'd enjoy it, she likes it when pretty girls force her to obey. She enjoyed the carnival so much she wanted to be a part of it, and the disability blogging world, so much she decided to start her own blog about dealing with depression and anxiety. Her blog is called It's just the way the medication makes her.

Now, those three need to inspire three other people to start a disability blog, and their heart's fondest wish will be granted.

• Visit Arthritic Young Thing
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