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%3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/mentoring.html">Mentoring

  • Posted by Dave Hingsburger
  • 31 Jul 07, 11:31 PM

Today, through the course of my work, I needed to contact Dan. We've not spoken in a few years but the absence of contact wasn't an indicator of anything more than distance and full lives. Every time we talk it's as if the years colapse and only days exist between conversations. It's nice to have people in your life who transend time. Dan is one of those guys.

I first met Dan at a conference where we were both presenting differing sessions. He had a booth in the display area as did I. He was hawking 'tees' and I was hawking books. He wandered down by our stall and stopped to chat for a bit. He leaned back in his wheelchair and out came a sense of humour that was refreshingly real. We swapped stories and then phone numbers. We kept in touch mainly by ending up at similar conferences and having booths in the display area.

After Dan, we met his wife, his baby, his family. He was the first person to ever really speak to me in a way that I understood about disability pride. He wasn't just talking a good game, he was speaking of something deep within. His journey, which began with a crash, had brought him new places and given him new ideas and fresh ideals. Truly cool people don't try ... they just are. Dan's that guy.

So we talked and caught up and then we did some work things. Afterwards I was telling him about being part of the club now, being in a wheelchair and all. I told the truth, that the transition from walking to rolling wasn't a big deal to me. We laughed a bit and Dan gave me formal welcome to the home team. But then, there was something I did want to talk to someone about. Someone who would take me seriously and someone who would be able to advise. I needed, and have needed for a while, a mentor.

I don't mind being disabled, for me. But sometimes I feel badly for Joe. He has to work so much harder now. Lifting the chair and cramming it into the trunk of a Volkswagon Beetle. Getting me up and out of the chair. Helping me up hills. He hasn't complained and wouldn't. He's that kind of guy. But still I feel guilty. Only sometimes.

I told Dan, a friend I've not spoken to in a couple of years, about this. He paused and considered what I was saying. It helped that he knew me, he knew Joe and he'd seen us in relationship to each other. Then we talked. Without flinching we talked about what our disability meant, not to us, but to those who love us. He was able to take me through a few realizations, we deftly stepped around the blocks in my thinking and gently he instructed me to let go of some things that I needed to finally release from my grasp.

It helped.

Really helped.

Dan by age is my junior, but in wheelchair years he is my senior. He was willing to give from his life, his heart go mine. This is the essence of community. This is what we as disabled people through blogs, through communion can do for each other. There are things I can't talk to with the bi-peds. There are things that I know would be shushed away. But I still need that guidance from one who's been there.

My wheelchair moves me through life, but it's my community that I need to lean on - for support - every now and then.

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%3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/post_3.html">Bionic Technological Advances

  • Posted by Zephyr
  • 31 Jul 07, 01:04 AM

Definition of: bionic (from http://www.pcmag.com/encyclopedia_term/)

A machine that is patterned after principles found in humans or nature; for example, robots. It also refers to artificial devices implanted into humans replacing or extending normal human functions.

Bionic medical technology has been in the news quite a bit recently. People with amputated hands can now enjoy fully functional bionic hands instead of the old claw-like replacements of yesterday. In %3Ca%20href="http://www.canada.com/theprovince/news/story.html?id=ddd3c484-b2d1-42ba-9aad-6be933d964cd">Bionic hand grabs our attention from Vancouver's newspaper The Province, John German talks about his new bionic hand, with fully flexible joints and digits.

The i-LIMB costs $18,000 US and is the world's first commercially available bionic hand.

Each finger is powered by an individual motor. The thumb also rotates, giving greater dexterity.

Two electrodes attached to the patient's skin pick up muscle signals that control the hand.

{...}

German says he can now put a key into a door lock, peel a banana, use a can opener, or pick up a Blackberry from a table.

Tyler Schilling, who recently lost his left arm in a vehicle accident, is the recipient of a new prosthetic arm. Pretty unspectacular, right? However, unlike the prosthetic arms of yore, this prosthetic arm will allow Schilling to move the hand and arm with his mind. From %3Ca%20href="http://seattlepi.nwsource.com/local/325630_arm30.html?source=rss">His mind controls his new arm via %3Ca%20href="http://seattlepi.nwsource.com/">Seattlepi.com:

Smith clamps the clipped nerve and maneuvers it over the "motor point" of part of Schilling's remaining biceps muscle. Like a fiber-optic cable, the nerve is packed with bundles of fibers called axons that transmit information from the brain to the muscle and back. Over a period of months, the axons will branch into the muscle, reprogramming it to read the signal for squeezing the hand. He sews the nerve into place with sutures barely wider than a hair, his fingers rolling smoothly along the needle, then repeats it with three more nerves for extending the hand and bending the elbow.

{...}

"I can still pretty much do everything I want to do," Schilling said. "It's just a little different now." He's tried swimming and peppers his doctors with questions about prosthetic attachments that will let him resume motorcycling and wakeboarding.

It's an exciting time for body replacement medicine. Bionic body parts are no longer a science fiction myth. I always roll my eyes when people call me a Bionic Woman, though technically it is true. I do have artificial body parts that have replaced worn out parts. I wonder if this new bionic technology will have an impact on joint replacement technology.

Finally, read about Jesse Sullivan, the world's First Bionic Man, %3Ca%20href="http://www.ric.org/research/accomplishments/Bionic.aspx">here

• Visit %3Ca%20href="http://arthriticyoungthing.blogspot.com/">Arthritic Young Thing
*May contain adult content*.

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%3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/password.html">Password

  • Posted by Dave Hingsburger
  • 29 Jul 07, 01:16 PM

I thought it was kind of funny, actually.

He didn't.

We were rushing in and out of the mall to pick something up. I didn't feel like shopping so we stopped at the food court. I love food courts. I got a cup of tea, a A&W veggie burger and an order of onion rings. They have tables for the disabled right at the edge of the food court - tables that border the mall. These tables are a bit higher, have removable chairs and have the blue badge guy painted on top to make it clear that this is where we are to gather.

At the table next to me is a young guy in his thirties. He's sitting in front of a cup of coffee and looks lost in thought. After a couple of bites of burger and a couple of slurps of tea, I strike up a conversation. After all, we're both crips, we're sitting side by each, why not chat. I make some noise about it being a hot day. Canadians love to talk about the weather, we don't do it as a 'filler in' conversation like those in other countries do, we take weather seriously. He looks at me, kinda cute, and states clearly. "I'm not disabled."

"The chair is a good disguise," I said and laughed.

He didn't find it funny.

"This is just temporary. I'm not like you."

He was annoying me. "How do you know it isn't temporary for me too?"

"Because you look too comfortable in that thing."

"So you'd be temporarily disabled, then?" He nodded, "and do you think the a##h### thing is permanent?"

"Look, I didn't ask to talk to you," he said, "I just don't want anyone to think that I'm ...."

"Crippled?"

Tears formed in his eyes and he nodded and looked away. I went back to my burger and decided to leave him alone. Not much of a nice guy anyways and who needs the aggrivation.

"Is it all that bad?" he asked me.

"Being in the chair?" I asked for clarification, I'm fat too ... dually diagnosed so I wanted to be sure.

He nodded.

"No, it's not bad. I still get around, still do what I want, it's not bad at all. Besides, it's like getting membership in a club you never wanted to be in and then finding out that they've got better beer and cooler people."

"It might not be temporary, they don't know yet."

"Oh." I wasn't quite sure what to say, but that's not often stopped me, "I hope it all works out for you."

Then I noticed someone coming towards us and he waved at her.

"Wait, before you go." I spoke with urgency.

He looked at me, curious.

"If it turns out that you are going to be in the chair longer than you thought ... the password is .... Criptonite."

He started to laugh. Like it was the first time he laughed at his possible future with a disability.

"It would almost be worth it," he said.

And was gone.

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%3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/a_vision_of_loveliness.html">A vision of loveliness ...

  • Posted by Lady Bracknell's Editor
  • 28 Jul 07, 03:16 PM

A miscellany of links of interest largely – but by no means solely – to readers who have visual impairments.

Firstly, did you know that there is a high prevalence of undetected sight problems amongst people who are learning disabled? The Look Up information service - a collaboration between SeeAbility and the RNIB – is designed to raise awareness of this problem and to improve access to sight care for adults with learning difficulties. Visit their %3Ca%20href="http://www.lookupinfo.org/index.php?id=home">website to learn more about how they plan to accomplish their aims.

If you’re an undergraduate (or, indeed, a graduate) and you are blind or visually-impaired, Blind In Business might be able to help you find the sort of %3Ca%20href="http://www.blindinbusiness.org.uk/employment.html"> job after which you are hankering . They also provide %3Ca%20href="http://www.blindinbusiness.org.uk/training.html">training in technology and career-planning for 14-18 year olds . Blind In Business is a charity, so its services are free. It looks rather as though all it takes to persuade them to come and visit your school is a firm promise of tea and biscuits.

One of the major requirements for anyone who is visually-impaired is, of course, accessible IT. And the same can be said for people with a wide variety of other impairments. If you’re looking for technological solutions to the barriers you experience with regards to information society, but you wouldn’t know where to start, it might be worth considering a trip to London on the 4th or 5th of October for %3Ca%20href="http://www.techshare-expo.com/">Techshare Expo 2007 at the Novotel London West. As the website says,

“From the internet to PCs, video games, digital TV, mobile phones, online banking - technology is making a difference to everyone's lives in work, education and play, but it needs to be accessible by everyone.”

There’s no cost to attend (er, apart from actually getting there, of course), and you can register as a visitor %3Ca%20href="http://195.40.181.94/techshare/registration.asp">online .


It’s one thing to know what you need to make your home IT accessible, though, and another thing entirely to get exactly what you need IT-wise for work. (I could relate anecdotes to you which would make your hair stand on end, but it would be a funny way to hand in my notice, so you’ll just have to take my word for it. In any event, I’m sure a lot of you will have similar anecdotes of your own.)

But hope is on the horizon. The Information Technologists’ Company have very recently published a free-to-download, comprehensive, 36-page booklet snappily-entitled, “The IT Directors’ Guide to Accessible IT”. (There’s a link to the download in the first paragraph on %3Ca%20href="http://www.publictechnology.net/modules.php?op=modload&name=News&file=article&sid=10153">this page.)

I startled my colleagues in the office by cheering when I read,

“There is no better way of keeping your department up-to-speed on accessible IT than staffing it with disabled people”.

Well, quite. Well worth saving a copy and emailing it post haste to the appropriate people in whatever organization you work for.

• Visit %3Ca%20href="http://labracknell.blogspot.com/">The Perorations of Lady Bracknell


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%3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/crips_talkin_about_sex.html">Crips Talkin' About Sex

  • Posted by Zephyr
  • 28 Jul 07, 12:49 AM

Warning: Post May Contain Shameless Self-Plugging

Looking for something to read today? Look no further. Head on over to %3Ca%20href="http://arthriticyoungthing.blogspot.com/">Arthritic Young Thing and check out the 19th Disability Blog Carnival: The Sex Edition.. Our bloggers share their experiences with sex in a variety of topics including: sex education, sex drive, sexual opportunity or lack thereof, having sex with a disability, devotees, sexual attractiveness...and some other NSFW, May Contain Adult Content subjects. Here's a couple of teaser excerpts to whet your appetite. I'll see you over at AYT!

From %3Ca%20href="http://karasheridan.com/?p=119">I’m in a Carnival! Sex and the ADA from %3Ca%20href="http://karasheridan.com">Kara's Place To Breathe and Believe:

We are less likely to marry and more likely to divorce than our able-bodied counterparts. This shouldn’t overshadow the fact that since ADA, there are more of us able to attend college, roll in bars or clubs, and even get in touch with significant others through the phone with relay services. We have the chance to meet more people, be seen, and establish ourselves as sexual beings ready to give and receive love. The width of doorways and the number of parking spaces might not seem especially sexy, but compliance with the standards of ADA can make the difference of whether those of us with physical disabilities can even venture into the same social venues to meet potential partners or enjoy romantic time with a date or spouse.

Read %3Ca%20href="http://cripwheels.blogspot.com/2007/07/wizard-and-wcd-sex-and-disability.html">Wizard and WCD: Sex and Disability from %3Ca%20href="http://cripwheels.blogspot.com/">Wheelchair Dancer's blog:

My first inclination that all was not well was when I explained that I had been prescribed a wheelchair. My mother's response was to ask whether Wizard still wanted to have sex with me. Even as I write this today, I am blown away. Err. What? Logic? What? Excuse me? We'd already been making accommodations. No. We had already been inventing new and creative practices to get around my RSI. A wheelchair didn't seem to be much more of an obstacle -- but it was.

Stop by %3Ca%20href="http://arthriticyoungthing.blogspot.com/">Arthritic Young Thing for more of the above. The Carnival also has entries on relationships, marriage, and disability activism. Enjoy!

• Visit %3Ca%20href="http://arthriticyoungthing.blogspot.com/">Arthritic Young Thing
*May contain adult content*

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%3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/when_cripples_go_crooked.html">When cripples go crooked

  • Posted by The Goldfish
  • 27 Jul 07, 08:40 AM

%3Ca%20href="http://news.bbc.co.uk/1/hi/uk/6916333.stm">
Six disabled people have been arrested, accused of buying expensive cars without paying VAT (as you're allowed to if you're on higher rate mobility DLA and the car is for your sole use) then selling the cars onto dealers at an enormous profit. There's a discussion of the arrests over at the %3Ca%20href="http://news.bbc.co.uk/1/hi/uk/6916333.stm">Ouch! Messageboard.

There is a constant flow of stories about disabled victims of crime, a subject previously covered on Ouch by Ian Cook in his article %3Ca%20href="http://www.bbc.co.uk/ouch/closeup/disability_crime.shtml">Tackling Crime Against Disabled People. Naturally, some crimes against disabled people - such as when %3Ca%20href="http://www.bbc.co.uk/ouch/features/ball_crime.shtml">Liz Ball was mugged and had her cane stolen - have far more serious consequences than similar crimes committed against a non-disabled person.

However, very often, the added pathos of a disabled victim will render even the most petty crime newsworthy. Garden gnome stolen from disabled man. Journalists will use the fact of disability to make someone sound extremely vulnerable - tragically confined to a wheelchair, Norman the Gnome was his only friend - and thus make the crime seem all the more terrible.

But it is rather unusual to hear about disabled people committing crime, at least not people with physical or sensory impairments. Unfortunately, it would seem that the more mental health labels - actual or speculative - that you can pile onto a murderers and sex offenders, the better. But the rest of us are unlikely to be much better behaved. Of course, people with chronic illness sometimes get in the news for crimes relating to cannabis, but these portrayals are not exactly unsympathetic. Which brings me round to the possibility that we're simply getting away with it more.

As a teenager, one of the first changes I became conscious of when I began to go shopping in a wheelchair was that there were no longer watchful eyes following me around music and clothes shops; the wheelchair seemed to exonerate me as a potential shoplifter. I suspected that a wheelchair-using teenager could pilfer to their heart's content whilst the shop assistants and security guards were preoccupied with their ambulant peers. You'll be pleased to know I didn't test this theory myself.

Oddly enough - and I really do think it is very odd - there appears to be no official data kept about numbers of disabled people in the prison population. But even if disabled people are generally well-behaved, we are undoubtedly over-represented among your fictional master criminals; I wrote a %3Ca%20href="http://blobolobolob.blogspot.com/2007/03/nobody-does-it-better-makes-me-feel-sad.html">blog post earlier in the spring assessing my chances of becoming a Bond Villain, for which physical impairment seems the most essential qualification. As I heard one comedian suggest recently, if only Gordon Brown would wear a patch over his "bad" eye, nobody would mess with the United Kingdom.

• Visit %3Ca%20href="http://blobolobolob.blogspot.com/">Diary of a Goldfish

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%3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/too_nice.html">Too Nice

  • Posted by Dave Hingsburger
  • 26 Jul 07, 12:39 PM

I've been in New York City doing training for an organization I know well there. This is my first time in visiting their building in a wheelchair and I didn't quite know how to get around. There are about six stairs up and into the front lobby and no sign of a wheelchair ramp. I got out of the chair, Joe carried it up the stairs and then walked me up one shaky stair at a time. All the while we were watched by the team (the TEAM) at security several feet away. When we approached them we asked if there were an accessible entrance to the building and they told us there was and explained how to get in on a level surface. Why one of the group, the team, couldn't have walked twenty feet an explained it to us before we climbed Mount Kill-a-man-inchairo I don't know.

On our way out I noticed that it was raining, hard. The disabled entrance came by the delivery bays for the building. I asked the guys out having a smoke if I could wait here under cover and have Joe pull the car in to get me. They were very accomodating. I had two ways out, one was to go to the disabled ramp which was a slow and gentle slope to the street where the entrance to the delivery bays were, or I could go down an industrial strength ramp that would go an extra 15 to 20 feet down to the docking bays. I decided, of course, to wait for Joe and then go out the disabled way. No way was I going down that steep, steep ramp.

A big guy, too old to still be working at hard labour like this, approached me and said, "I'll take you down the big ramp."

I looked at him like he was out of his flipping mind. But my voice said, calmly as I've learned these can be dangerous situations. It's about his need to help, it can be edgy denying someone their need. "No, thanks," I said cheerily, "I'll wait for the car and then go out the other way.

He kept coming.

"Really, no, really, it's very nice of you, and I really appreciate it, but I'd like to go out the more level entrance."

He kept coming.

Movie music started playing in my head. I glanced over at the ramp, It was really steep. Not made for wheelcairs, it wasn't even very wide. I glanced back at him and he had a pleasant smile on his face. And ...

He was still coming.

Where was Joe? Where was Joe? Where was Joe?

As he was almost on me, I got a little more assertive. "The ramp is to steep, the drop could kill me, I thank you but I'm going to go out the other way."

"I'm strong, I can get you down." He said not hearing a word I said.

"Yo Bill," Another voice enters the fray, "Leave him alone, we're not supposed to use that ramp."

He looked over at a co-worker, shrugged his shoulders, and gave up pursuit of his dream of helping me.

It shouldn't have taken another voice.

Mine should have been enough.

But it wasn't.

Isn't often.

If I'm going to be pursued my whole live by the pity police, I think I've got to practice more assertion.

Anyone got tips?

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%3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/post_2.html">Equipping Myself For Freedom

  • Posted by Zephyr
  • 26 Jul 07, 01:33 AM

Today my boyfriend and I hit the Red Cross Canada to borrow a wheelchair and a walker. The Red Cross has a program where you can borrow medical equipment for extended periods of time, as long as you have a written request from a medical profession. I now have in my possession a basic manual wheelchair and a walker with front wheels.

I'm happy! This is going to improve my life in some ways. I do walk, but with much pain and difficulty. I can handle standing and walking on my canes for short durations. I use my canes for things like medical appointments, errands, social outings, etc., and it works out fine. But there have been times when my partner or I have said, "Gee, it's a shame we don't have a wheelchair right now, because I/you could keep going without pain and we wouldn't have to stop doing what we're doing." Activities like walking, festivals, shopping, or community celebrations are often cut short because I'm in so much pain from walking and standing that we have to go home early. Having me in the wheelchair would mean we could enjoy ourselves as long as we wanted to, and I wouldn't have to pay the price afterwards by suffering.

A wheelchair would also be good for bad days when I need help getting somewhere. Let's say I really need to get to my doctor's office, but I'm in too much pain to walk. My partner can put me in the chair and push me there, as it's a short walk from our apartment. The walker will help for days when I'm able to walk but walking is very painful. I imagine I'll be using inside the house and around the neighborhood when I'm running errands.

When I knew it was time to start using two canes and a walker, I was a bit blue for a while. It mean I was losing yet more mobility and functioning. It took me a while to get used to the new state of affairs. But now I'm just happy to have all this equipment on hand, available for when I need it. We took the wheelchair for a test drive today, and it was incredible, getting from point A to point B without any pain or struggle.

It got me wishing my apartment was accessible so I could get a battery-operated wheelchair. Unfortunately, accessible housing doesn't jive with me. Living in an apartment complex or co-op does not sound appealing to me. I'm a moderately noisesome gal who throw lively parties where people do, ahem, rather unconventional things. I'd be kicked out of an accessible co-op within a month. Having an accessible home is important, but far more important to me is a home where I can LIVE and be myself. If I have to haul my ass up two flights up stairs to do that, so be it.

I tell you, though, when I'm through with my web design program and (hopefully) go up one or two income brackets, I do intend to look for an accessible house, and then Vancourites better watch their toes, because Hell on Wheels is on the loose!

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%3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/the_floor.html">The Floor

  • Posted by Nicola
  • 25 Jul 07, 05:42 PM

I hate the floor, me. I mean, I realise it has its uses in architectural or gravitational terms. I’m not suggesting that disabled and non- alike live out their days suspended in air, that would worsen the situation somewhat for those of us with poor spatial awareness. I merely ask that someone, somewhere, in between designing Wheelchairs wot climb stairs, completely revaluate the concept of Floor.

Once something has hit the floor, there is no predicting its destiny. I recently told you all of my DVD Boxset of House. Well, I regret to inform you that it has since met an unfortunate fate. I was sat at my computer, minding my own, I reversed my wheelchair and there was a loud tearing cracking noise. I had crushed the half-empty boxset box.

Never again will I be able to arrange my DVDs side by side in numerical order, safe in the knowledge that they are secured by cardboard with a matching colour scheme. What pains me is, this was all the work of a slight nudge on a joystick. The same wheelchair that veers into the road at the smallest pavement tree root is capable of wanton destruction. Destroying things with the kind of efficiency it appears to lose when I need to be at the library on time. Yes indeed, this was all about being disabled. This would never have happened had I not nearly been born on a pavement in my mum’s lunch break in 1984. Hugh Laurie’s face would still be intact instead of covered in tyre tracks with a hole gouged out.

The only way to save something from an uncertain future in the shadow of a power chair is, of course, to pick it up off The Floor. This is easier said than done. The art of dropping things on The Floor, or rather the end result, splits into three categories: In Reach; Out of Reach; In Reach But Risky.

For me personally, “In Reach But Risky” can mean anything from dicing with death to just leaving the thing until 6.30 (My timetabled PA/carer slot, how could you not know?)

The other day it was my MP3 player. A disaster, the thing slides spectacularly from my lap to the floor under the desk. Eventually resolved with my crutch and my less spazzified foot. But frankly I have better ways of filling my time, like watching battered House DVDs.

Finally, and this is important: Floors hurt. A lot. Many’s the time I have reached the drunken conclusion that I can in fact walk unaided, only to meet swiftly with someone’s carpeted concrete and the kind of pain no amount of alcohol can numb.

Floor: it doesn’t have to be this way… or maybe it does. I don’t know about you but I’ve not seen Tomorrow’s World in ages, did they axe it? Because if schoolfriends, cabbies and passing strangers are anything to go by. TW is the only place to bring anything useful to disabled people. That and the occaisonal Newsround slot.

Oh well, no one can invent Nouveau Floor for us. The design brief being: no pain, no dropping, basically no gravity. Damn.

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%3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/not_working_not_whiling.html">Not Working, Not Whiling

  • Posted by The Goldfish
  • 24 Jul 07, 12:25 PM

There was an article on the BBC News website last week about %3Ca%20href="http://news.bbc.co.uk/1/hi/magazine/6288812.stm">the difficulty in gaining employment when you're in residential care, which raised the case of a highly qualified young man, Doug Paulley, who was struggling to get work that would pay.

However, what struck me was the familiar language used around his situation, stating that "...he is likely to while away his days in a residential home..."

Which reminded me of last year, when then Prime Minister Tony Blair spoke of those who "...currently languish on benefits."

Discrimination in employment as well as an uncompromising benefits and social care system are vitally important issues for disabled people. I've %3Ca%20href="http://blobolobolob.blogspot.com/2006/09/free-money.html">written in the past about misconceptions around incapacity benefits and the alleged life of luxury we lead. However, there will always be some people who are simply not able to work and this doesn't mean that we are condemned to spend our lives doing nothing and not participating in society.

Even Doug Paulley doesn't while away his days at present; he designs websites for free for non-profit organisations and undoubtedly makes a significant contribution to society in doing so - even if it would be much better if he was allowed to have a career and the freedom and independence associated with that.

It strikes me that as it becomes less and less acceptable to assume tragedy when someone can't walk at all or see, the status of people who really can't work remains unchanged.

Truthfully, the inability to do conventional paid work is of great personal frustration to everyone I have ever known in this position, myself included. When people become incapacitated, it often involves an enormous shift in identity. And many people I know seem to have some scheme through which they hope to become self-sufficient; computer programming from bed, writing during the good periods, selling handicrafts and so on. And indeed, you occasionally meet people who've done it; people who couldn't do any other kind of work because of the severity of their ill health, but have found something they can do and some means to make it pay.

However, a human being is not an economic unit. The value of a person and the quality of their life has nothing to do with how much money they make or how much tax they contribute to the collective pot. I like to think a person's value is innate and when it comes to making a contribution, there are so many significant roles a person can perform outside paid employment. Leaving aside the huge amount of formal and informal voluntary work performed by people who are unable to work, our value as friends, lovers, parents and so on is immeasurable.

So while I am all for combating attitudes and systems which help keep disabled people out of employment, whether or not our lives are to be considered worthwhile should not be dependent on this.

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%3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/never_be_afraid_to_ask_for_acc.html">Never be Afraid To Ask For Accomodation

  • Posted by Zephyr
  • 24 Jul 07, 03:33 AM

While I was doing some banking today, I finally told a teller about the broken disabled access door at the entrance. It's been broken for about a year now, and it has always amazed me that no one got around to fixing it. After all, it's a bank. If anyone can afford to fix a mechanical door, it's a bank. They are the people who handle our money, so they can return the favor and make their banks accessible to us.

You'd think I would have mentioned it before, but I figured the bank was already aware of it. While cashing a cheque, I told the cashier about the door and she said she'd make a note of it. Her reaction was interesting, she actually seemed to not be aware of the problem. Now I'm wondering, is it possible that no one's mentioned the broken door before? I can't imagine that. The branch is located on a very busy intersection in a part of town where a lot of PWDs live. Can it really be that no one's ever brought it to their attention before? Has everyone assumed, like me, that the bank is already aware of the problem? Could this be part of the reason public places aren't accessible, because people don't bother to ask for them to be made accessible?

We'll see what happens next time I go to the bank. If the door isn't fixed by then, I'll either ask again or email my bank.

On my way out, the teller very loudly asked the security guard to get the door for me. I made a point of saying "I didn't ask about the door for myself, I can get the door. I asked on behalf of the people who can't get the door themselves." Normally, the security guard always opens the door for me and I don't say anything, because I'm all about encouraging people to be polite and courteous. Also, the security guard is usually right next to the door anyway. But today I made a point of making sure it wasn't just about me, because it's not. Public accessibility is for everybody.

It reminds me of another time when I asked for accommodation. While attending university in Newfoundland, I would wait for the bus for up to 45 minutes, often in heavy snowfalls and blizzards. As you can imagine, this was incredibly hard on me. My mother phoned the bus company - yes, I know I should have self-advocated but telephone bureaucracy triggered my anxiety disorder in those days - and requested they build a bus shelter with a bench at that stop for me. They were resistant to do so, not because they didn't want to help, but because we lived in a rough neighborhood, and they feared that local hoodlums would just tear it down again. But Mom talked them into it, and voila! I still had to wait in the cold for 45 minutes, but now I got to sit down, sheltered from the high winds and pelting snow/rain/hail. Mom, you rock.

The moral of the story is Ask, and you may receive. Do not ask, and you definitely will not receive.

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%3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/sicko.html">Sicko

  • Posted by
  • 23 Jul 07, 11:35 AM

Michael Moore has done it again. The self-appointed defender of the people is whipping up controversy with his latest documentary, %3Ca%20href="http://www.sicko-themovie.com/">Sicko.

This time it's the American healthcare industry that's his target. He shows a family living in one room having had to sell everything they own to afford medical treatment, despite having health insurance. Sicko compares the American system to supposedly better ones elsewhere in the world, like Canada and, ahem, the UK.

I admire Moore, who also gave us Farenheit 9/11 and Bowling for Columbine. But get this. The man who leaves no stone unturned is reportedly envious of the NHS. He told the Times newspaper recently:

"Keep your British health system. Never get rid of it. It's a wonderful thing."

Cue hysterical laughter. The thing is, it may be 'free' but boy do they make us suffer for it. And it's not quite as free as Moore thinks when you consider taxation and the stealthy privatisation initiatives that have seen the original spirit of the NHS tainted. I wonder which is best. 'Free' but rubbish, or expensive but available... if you can afford it? Neither is ideal, but I wish Michael would check his facts before pronouncing the NHS 'wonderful'.

We can't see Sicko yet in the UK, but to put it in context millions of Americans are not covered by health insurance, or not adequately covered. Premiums can be extortionate, and even then you can find you're not fully covered. As the %3Ca%20href="http://www.free-press-release.com/news/200706/1182036674.html">American Society of Registered Nurses observes, the U.S. doesn't fare too well when you compare world statistics on infant mortality, life expextancy or even number of doctors. Had I not known this I could have answered Moore's praise of the NHS with something equally misguided like:

"Surely if you pay for something, you are getting a better service than one that's for free?"

I wonder what is it like to be disabled in America, receiving healthcare you have to pay for, or worse, can't afford to pay for and go without. Then what happens? Do people have to stop taking medication if they haven't got the money? Do they have to make life-endangering decisions about what treatment they can or can't access?

All I really know is what I know about the NHS. Just as all Moore really knows is the American healthcare industry.

I think there's a commonly-held misconception that the NHS is still run in the spirit of Aneurin Bevan in the late 1940s. Under this misconception, people who don't live in the UK may believe any of the following:

Hospitals are shrines to cleanliness

The food is absolutely delicious

There is a clean, freshly made bed waiting for every patient

No one has to wait for anything, ever

Heavy on the sarcasm, I know, but I can't help it. My experience of the NHS nearly killed me. I'll go further. Misdiagnosing my father could well have led to his untimely death from cancer. I find myself thinking quite often "If only". And thousands upon thousands of people across the UK are thinking the same.

If I lived in America in my present circumstances, I have no idea whether I would be able to afford my prescription, let alone the hospital stays, therapy, home visits and everything else I can at least say I have received. But equally, there's what I haven't received. All those waiting lists (I'm on five). Treatment and equipment that are being denied. And again, it's the same for thousands of others.

Would we be in this position if successive Governments had cherished Bevan's vision? He must weep, looking down on the scandalous state of things in Britain in 2007.

If we had to pay, would we at least get what we need?


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%3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/not_such_a_wimp_afterall.html">Not Such A Wimp Afterall

  • Posted by Zephyr
  • 23 Jul 07, 07:55 AM

I've never thought of myself as a particularly strong person, at least not on the outside. I have arthritis, after all. Physical prowess doesn't exactly come along with damaged joints. Let's face it, I'm a wimp. A 5-year-old could take me out.

Yet, in some ways, I'm not such a wimp. I've discovered a few abilities that have made me rethink my self-proclaimed wimp status, at least in the upper body region. I've also learned that there are different kinds of strength.

I pack a mean punch. This is an ability I discovered one day when my boyfriend teased me a little too much. Maybe he made fun of my hair or something, but I hauled back and punched him in the chest multiple times. I made him beg for mercy! Ironically, I can't punch with my base knuckles, so I punch with either my middle knuckles or the joints themselves, which actually winds up hurting more. I also do this thing where I hit people with the heel of my hand really hard, which people never expect me to do. It's nice to know I have all these surprise defense tactics to pull out if I ever get attacked.

Which brings me to my second discovery. I'm not too slow in whipping out the canes if I need a weapon. A friend of mine once crossed the line when teasing me and fast as lightning, I whapped him under the kneecaps with my walking stick. He didn't even have time to see it coming. I think he'll think twice before insulting me again!

Man, I sound like I need anger management classes. Luckily for me, most of my male friends love being beaten up by good-looking girls.

My canes provided another opportunity for discovery when I wore through the rubber covering on the bottom. You know, that little rubber cap that keeps the bottom of the cane from tapping on the ground? My ankles have been quite bad lately, particularly the left ankle, and I wore through the rubber tip on my right cane as a result. No problem. I got it replaced by my pharmacist. A week later I wore through it AGAIN. Can you believe that? I thought, Holy cow, not only are my ankles that bad, but I must be really strong to be able to wear through a rubber tip in a week! And here I was, wondering why my right shoulder hurt so much. Let me tell you, I may be 20 lbs overweight right now, but if you squeeze my biceps and triceps, there's a lot of tight, toned muscle in these guns.

A friend of mine has a thing for hands and arms, and she tells me I have a remarkably strong, capable, firm yet sensitive touch. "So soft and gentle it masks the strength and directness behind it." I like that description.

Some days you can see me strutting down the street on my canes, reveling in my strong arms bearing the weight that my feet can't handle. As my hands grip the cane handles, I'm reminded of how agile and dexterous they are. These are the hands that type 70 words per minute. These are the hands that are learning to play guitar and the Irish tin whistle. These are the hands that elicit sounds of joy and pleasure from others. The arthritis has taken a lot of things I enjoyed from me, but I was happy that it spared my hands. Out of all the body areas to be affected by arthritis, the hands are the worst, for me. I had a flare-up in them once and I almost went nuts. I'm really glad the arthritis is dormant in them the majority of the time. I love my hands. They do so much for me and others!

Now I just need to learn how to trip idiots who say dumb things about my disability with my canes, and master the innocent look.

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%3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/disapedia_guides.html">Disapedia Guides

  • Posted by Zephyr
  • 22 Jul 07, 09:56 AM

One of the most notable features of the new %3Ca%20href="http://disapedia.com/">Disapedia website is their %3Ca%20href="http://disapedia.com/index.php?title=Category:Etiquette">Etiquette section. There is a %3Ca%20href="http://disapedia.com/index.php?title=Guide_to_Appropriate_Terms">Guide to Appropriate Terms, which explains to the able-bodied acceptable terminology to describe us disabled folk. For example:

Acceptable: Disease; illness Unacceptable: Malady. This antiquated, florid term has connotations of affectation and eccentricity which are stigmatizing.

But I like the word malady! I want to be affected and eccentric! Having a malady sounds so much more interesting than a plain old disability or disease. Mah-la-dee. It rolls off the tongue just so. I love Victorian words, they're so melodramatic. But otherwise, it's a superb guide.

There is also %3Ca%20href="http://disapedia.com/index.php?title=How_to_talk_to_a_disabled_person">How To Talk To A Disabled Person, which thus far explains how to talk to persons in wheelchairs, and people with vision, hearing and speech impairments. You know what I would love to see added? I would love to see a guide to talking to people of unknown mental capacity. Let me explain. In Gimp Camp - yes, that's what I call it - there were a couple of guys in wheelchairs with full-body paralysis who spoke using computers, like Stephen Hawking. However, unlike Hawking, I think they had severe developmental disabilities, but it was hard to tell because I couldn't use regular speech as a gauge. I was never really sure how to communicate with them, beyond "Hi, how are you? Nice day, isn't it?" I'd love to see a guide to communicating with developmentally delayed people, especially those who communicate through computers.

Last, but not least, there is %3Ca%20href="http://disapedia.com/index.php?title=What_to_do_when_you_holding_an_event">What To Do When You're Holding An Event. I'll have to remember this when I host an upcoming Pagan celebration. Remember when I was %3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200706/fighting_for_accessibility_it.shtml">bitching about a local Pagan group who seemed to believe that making rituals accessible was the responsibility of PWDs? I decided to step up and show them that a ritual could be fully accessible and inclusive of PWDs, children, the elderly, and folks using public transit. My coven and I are organizing the ritual for Mabon, the harvest festival in September. Now I have to find a fully accessible space that is located in a transit-accessible location.

I also need to figure out what is involved in 'fully accessible'. I know it means wheelchair accessible, with ramps and elevators, and accessible bathrooms. I also know that realistically, I may not be able to accommodate every single accessibility need that exists. A friend of mine send me a %3Ca%20href="http://dawn.thot.net/access_checklist_full.html">list and it's huge! But I want to do my best to at least cover the basic points. Any suggestions from you guys out there? What do you think is a basic accessibility requirement for a semi-public Pagan ritual? Thanks!

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%3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/rudys_blog.html">Rudy's blog

  • Posted by
  • 21 Jul 07, 02:31 PM

The best thing for me about blogging for Ouch is how we've been contacted by other disabled bloggers who want to share their stories. People who have just started a blog, who are thinking about it, or who have one they want to tell people about.

Rudy Sims has spent a decade blogging from America and over the past two years he's been putting together %3Ca%20href="http://disabilityblog.info">Disabilityblog.info. He was finding it difficult to find online resources for living with Cerebral Palsy and chronic pain. So he decided to provide a site for those looking for disability news or information about their own disabilities.

Rudy uses several different search engines and more than 200 different news sources to find content to post on the site. Navigating it is like finding a treasure trove of news feeds all at once. Clear layout ensures you get right to where you want to be. Latest health items are on the main page. Then if you look at the links on the right, you'll find a huge spectrum of topics related to disability issues.

Plus there are links to separate blogs on specific conditions, all of which Rudy has created and updates himself. Each is like a specialist news feed in itself. I asked Rudy to give us the lowdown. He said: "I love doing research and helping people. One of my biggest problems is I don't type very well due to my disability.
"I have to get someone to type long responses, and that's why I don't write a lot on my blog. So the best way I can help others is to point them to helpful resources.
"I have Cerebral Palsy and am dealing with chronic pain, but found it very difficult to find helpful information and resources. I wanted to provide a place where I could point people to information relevant to their disabilities."

As %3Ca%20href="http://arthriticyoungthing.blogspot.com/">Zephyr noted when she %3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/disapedia.shtml">reviewed Disapedia, it's contributions that really make a site grow. And Rudy is keen for people to contact him:

"My website is what I do with my free time. It actually started ten years ago as a personal site I created when I was in high school. I then went to college for two years. My hope was to be a counselling psychologist, but due to chronic pain I had to drop out.
"This is my full time job. As the site gets more popular I hope I can get people to add their own personal stories and experiences, which will hopefully help others. I am working on a personal blog to share my own experience and I hope to get my Mom to contribute her experience of raising three children with disabilities."

%3Ca%20href="http://disabilityblog.info">Disabilityblog.info

Email Rudy at info@disablityblog.info


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%3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/favorite_disability_blogs_and.html">Favorite Disability Blogs and Disability Blog Carnival

  • Posted by Zephyr
  • 21 Jul 07, 09:14 AM

I've spend the past couple of days feeling very much under the weather, literally. Like the UK, it's quite rainy and gloomy here in Vancouver, so I'm hiding out in my room waiting for the summer to come back. I'm mostly keeping myself occupied by reading No Pity by Joseph P. Shapiro, thanks to the suggestion of an Ouch! commenter. I've also been reading up on some other disability blogger's sites. Here are a couple of my favorites.

%3Ca%20href="http://elizabethmcclung.blogspot.com/">Screw Bronze! - Elizabeth writes about disability issues, life as a lesbian, LBGT issues, epee fencing, and manga. She's an academic and an award-winning novelist who lives in Victoria, BC, Canada. Read her recent post on %3Ca%20href="http://elizabethmcclung.blogspot.com/2007/06/face-eating-alien-metaphor-with-my.html">getting a bikini wax, it's awesomely hilarious. I can relate, though I can't say I've ever passed out mid-wax. My skin's still growing back from my latest bikini wax, though. I'll be downing some drinks beforehand next time, I'll tell you that.

%3Ca%20href="http://growingupwithadisability.blogspot.com/">Growing Up With A Disability - David interviews people with disabilities and shares their stories on his blog. He also writes about disability news and current events. David was recently invited to go to Costa Rica to participate in %3Ca%20href="http://www.miusa.org/exchange/costarica07/index_html">Mobility International's 2007 US/Costa Rica: Youth Leadership and Cross-Cultural Perspectives on Disability Rights Exchange Program. His blog contains lots of stories and photos of his travels in Costa Rica. One of those posts will be featured on the upcoming Disability Blog Carnival, hosted by Yours Truly.

What's the Disability Blog Carnival, you ask? It's a collection of posts from different disabled bloggers writing on a common theme. The next carnival is July 26th and the theme is Sexuality and Disability. If you'd like to submit a blog post, please go %3Ca%20href="http://blogcarnival.com/bc/submit_546.html">here. Don't forget to visit %3Ca%20href="http://arthriticyoungthing.blogspot.com">Arthritic Young Thing on July 26th for the blog carnival. In the meantime, do check out the last carnival hosted by Retired Waif %3Ca%20href="http://retiredwaif.com/2007/07/12/disability-blog-carnival-18-and-a-baby-perhaps/">here. Have a great weekend!

Visit %3Ca%20href="http://arthriticyoungthing.blogspot.com/">Arthritic Young Thing
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%3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/post_1.html">Words

  • Posted by Dave Hingsburger
  • 19 Jul 07, 12:05 PM

I've read with interest as others have discussed the various models of disabilities and find myself informed and challenged. All I know about it is that at home, where the house has been adaped to my specific needs, I feel that my disability intrudes little in how I live my life, when I'm in a part of the world not adapted for my needs, I feel much more encumbered by getting around and getting things done. But, that's not what I want to write about today. I have noticed that a lot of people use the word 'ableist' to describe attitudes or prejudices regarding disability.

A new word that I have found popping up on webs and in discussion is a word that I much prefer and a word that I promote in my lecturing and training. "Disphobia" as the phenomenon and "Disphobic" as the word to describe the attitude. I like this word for several reasons, many of them petty. I find it easier to say, I think it looks better in print. But more than that I also find that when I use the word in context like saying "That's a disphobic attitude' people understand my point without me having to define it. Whenever I say 'ableist' people look at me blankly. But that may simply be a Canadian phenomenon.

Too, I like the world because I think that what we experience as people with disabilities is akin to what gay people experience. In fact a writer from the disabled community in the United States, whom I often quote about this but whose name I have forgotten, said something like, "The gay community and the disabled community are twin communities because we both have parents that would wish us different if they could." She pointed out that disabled people like gay people live in families that are essentially quite different from us and in some ways quite distant from us.

Similarly, we as disabled people have to come out to ourselves and others as disabled. We have to move away from "I'm just like everyone else" to "I have the rights of everyone else even though I'm different from them." Indeed there are disabled people who are entirely in the closet - even if only to themselves. Whey you have a Prime Minister, for example, who ... let's say ... can't see for trying ... who says, "What! ME? Disabled. No, never really felt disabled a day in my life." One understands the need to self identify as having a disability to oneself and then to identify with the disabled community.

So, Disphobia is the word for me and I will continue to confront bigots for their disphobic attitudes. You might want to do a search on the web and find that there are several British websites using the words - oh and you'll find that there's a punk band of the same name - and then consider if this word might have a better chance to 'take off' in public parlance than 'ableism' or 'ableist' which I never hear outside the rhelmn of really well informed disabled writers and speakers.

Alright, I'm curious, what do you all think of the word.

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%3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/being_of_sound_mind.html">Being Of Sound Mind

  • Posted by The Goldfish
  • 19 Jul 07, 11:58 AM

The son of a millionaire businessman is %3Ca%20href="http://news.bbc.co.uk/1/hi/uk/6904230.stm">contesting the will in which his father left his £8.3 million estate to the Conservative party, on the grounds that the chap, Branislav Kostic, had a mental illness and lacked the mental capacity to make a valid will.

In the press, much has been made of the millionaire's notion that Margaret Thatcher was going to save the world from satanic forces. As comical as that might seem, beliefs which hold a living person in divine esteem are rather commonplace and not necessarily an indication of psychiatric illness. The Yaohnanen tribe, for example, who %3Ca%20href="http://news.bbc.co.uk/1/hi/programmes/from_our_own_correspondent/6734469.stm">worship Prince Philip as a god, are not believed to be unwell.

Even the experience of fully-fledged psychiatric delusions is not necessarily any legal bar to controlling one's finances and writing a valid will; one doesn't actually have to be of sound mind in every sense, so long as one is able to understand the will and its implications. Unfortunately, there is a real question as to whether Kostic's illness poisoned his affection towards his son, thus influencing the will. This is also the point which makes the whole case a rather tragic one, whatever the outcome.

Considering such matters in hindsight is rather tricky. If you are not believed to be of testamentary capacity whilst you are living, then concerned parties can ask a Judge to create a 'statuary will' on your behalf. Similarly, there are steps others can take if they feel you are not able to handle your finances. This apparently didn't happen in Mr Kostic's case and the will appears to have been in place for twenty years before he died.

The Conservative Party, who received several large donations from Kostic when he was still alive, have also been criticised for accepting this money when there was reason to doubt his capacity. This immediately puts me in mind of friends who have accrued enormous debt during phases of impulsive shopping, or signed up for expensive and unwanted financial products in a state of confusion.

Such mistakes can be difficult to guard against, much less undo, but at what point is a person no longer responsible for their finances? To what extent should major decisions be discounted if we have been unwell at the time of making them? And when does an eccentric belief become regarded as a problematic delusion?

The mental health charity %3Ca%20href="http://www.mind.org.uk/">Mind have an on-line booklet entitled %3Ca%20href="http://www.mind.org.uk/Information/Booklets/Rights+guide/Mind+rights+guide+7.+Managing+your+finances.htm">Managing Your Finances, which some readers might find useful.

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%3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/disapedia.html">Disapedia

  • Posted by Zephyr
  • 18 Jul 07, 01:17 AM

Have you checked out %3Ca%20href="http://disapedia.com/index.php?title=Main_Page">Disapedia yet? It's a community site for PWDs that's run like Wikipedia. People can register and write articles, edit existing articles and participate in the forums. From the front page:

We are a community of individuals creating a collective disabled knowledge. We are of the opinion that each disabled individual has a piece to the puzzle that is living life with a disability. It is our hope that by combining them together we may one day help someone arrive at their own solution.

Some of the things Disapedia contains:

• disability-related news
• polls
• articles
• movies, books and other media
• a guide to different disabilities
• a forum where PWDs can discuss various disability-related topics
• disability humor
• disability history.

It does have an entry on the %3Ca%20href="http://disapedia.com/index.php?title=Social_Model">Social Model of Disability, I'm pleased to see. When I checked in last week, I didn't see one. Go check it out. While you're there, enter the %3Ca%20href="http://www.disapedia.com/messageboard/viewtopic.php?t=69">Creepy Devotee Contest if you're eligible.

I regret that I don't have any creepy devotee stories myself. I'd actually be open to dating a devotee, but I don't think I've ever met one. Although there was this one guy who flirted with me and a friend with CP...I dunno if he was a dev or just had a crip chick fetish in general. Loved his pick-up line, though. "So, I see you walk with a cane. Yeah, I had a girlfriend in a wheelchair once. Boy, she sure was a cool girl." *yearning, faraway look* What do you guys think? Do you think he was a dev or just into disabled girls?

Whatever he was into, we sure got a laugh out of him that day. Smooth, buddy. Real smooth.

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*May contain adult content*

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%3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/straight_banana_anyone.html">Straight banana anyone?

  • Posted by
  • 16 Jul 07, 08:36 PM

Mobility scooters are to be classed as %3Ca%20href="http://www.timesonline.co.uk/tol/news/politics/article2039656.ece">'leisure vehicles', in the same class as golf buggies and racing cars. Who thought this one up?

Brussels, of course. No one is %3Ca%20href="http://news.bbc.co.uk/1/hi/world/europe/6481969.stm">quite sure these days whether or not the Eurocrats really did try to ban the banana in the shape nature intended...but this latest move seems far from the stuff of legend, and is far from funny. It will bump up the price of mobility scooters after a change in the tax classification, and poses a threat to the current zero VAT rating. Any imported scooters will incur extra import duty, adding £200 to the average £2,500 cost.

I found it frustrating that only Age Concern was quoted in the original article, although it may have been Age Concern that raised the whole issue in the first place. But obviously, mobility scooters are a 'vital tool' for keeping many disabled people 'independent and mobile', not exclusively older people.

Then there was the comments box.

"We see people doing their shopping on them, occasionally getting off and obviously able to walk.
It saves them parking a car."

I really don't think the hassle involved in even acquiring, let alone maintaining and storing a mobility scooter makes it an easier option than parking a car. The person who left this comment possibly revealed a deeper belief that some disabled people are just lazy, or faking it.

Another comment shows how complicated actually even registering a scooter can be:

"I recently bought a new mobility scooter and was amazed to find that I had to register it with the DVLA. The form provided is the same one that a car dealer fills in before selling you a new car...
I'm disabled and live 20 miles from the nearest post office that can accept my application, so I had to send it by post together with an electricity bill as proof of my address, plus my passport as proof of identity! There is no charge as it's in the 'Exempt' class due to being an invalid carriage!"

So, invalid carriage or leisure vehicle? How about just plain old mobility scooter? Preferably available on the NHS for people of all ages with a disability.

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%3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/share_a_smile.html">Share A Smile

  • Posted by Dave Hingsburger
  • 16 Jul 07, 04:03 PM

Joe came up from downstairs yesterday carrying a box and saying, "Hey, look what I found." In his hands is a pink box. I can't imagine for a second what he'd unearthed from the piles cluttering up our basement. But as he got closer, my heart lept for joy.

"It's Share a Smile Becky!" I screamed, trying not to sound to ... um ... gay.

Becky is commonly known as 'Wheelchair Barbie' even though it is very clear that the Beckster is Barbie's friend. She sits in her pink and purple wheelchair with the chrome wheels and the white carry-all bag on the back, waving out through the plastic window. And, true to promise, she's smiling. Forgive me but I was so happy that I shared that smile with her.

On closer inspection, I see that she is wearing a white tee with a happyface flower pulled on over her bodacious ta tas and a blue mini skirt over pink leggings. She's still in fashion even though she came out in 1997, I believe. I had picked her up at a Toys-R-Us in Boston, getting two. One to rip open and play with. (Shut up.) And this one to keep preserved in the box. When I bought her, of course, I had no idea that I would one day be Share a Smirk Dave with a wheelchair all my own.

On the back of the package there is a picture of Becky with, Christie (African American Barbie) and Barbie herself. A true picture of diversity. The three happy young women enjoying time together. The funny thing about the picture, though, is that Barbie and Christine are standing, one on each side of Becky. That's right, standing.

Everyone knows that Barbie, Christine, and all the other AB Barbies, can't stand up. (Don't ask me how I know, just imagine how proud my parents were when I was a boy.) Not a single Barbie doll has the capacity to stand on her own. The all have tiny little feet upon which balance is impossible. In reality, Barbie and Christie would be on the ground, face down, while Becky smile's on.

Becky is the only Barbie doll that was ever upright, independantly.

The only stable Barbie, is crip Barbie.

She's on the desk beside me now, smiling out.

Probably appreciating the irony.

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%3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/the_notorious_pistorius.html">The Notorious Pistorius

  • Posted by The Goldfish
  • 16 Jul 07, 01:05 PM
Oscar Pistorius
The sports world is in suspense this week as the athletics' governing body, the %3Ca%20href="http://www.iaaf.org/">IAAF attempts to determine whether 'Blade Runner' Oscar Pistorius, who is a double-amputee, has an unfair advantage over his bipedal competitors. If the IAAF finds that his prosthetics (or 'blades') give him an edge, then the South African sprinter %3Ca%20href="http://news.bbc.co.uk/sport1/hi/athletics/6900445.stm">could be banned from the 2008 Olympics.

Elio Locatelli, the director of development for the I.A.A.F. has been widely quoted in saying that

“It affects the purity of sport. Next will be another device where people can fly with something on their back.”
Which begs the question, if sport might be sullied by the presence of technology, does paralympic sport, where prosthetics, wheelchairs and other technology are commonplace, simply not count? And what about cycling, where a new lighter and more stream-lined type of bicycle might make all the difference?

Disability Bloggers have been writing about this. Elizabeth at %3Ca%20href="http://elizabethmcclung.blogspot.com/2007/07/oscar-pistorius-v-iaaf-excluded-for.html">Screw Bronze! takes up this theme of sport and purity in an in-depth post which compares the anxiety about Pistorius with other historical sporting dillemnas, such as the initial ban on boxer Jack Johnson being able to compete in for the Heavyweight Championship - because he was black.

"This seems to be the essential argument and it is also the most familiar. While the rhetoric of society is that disabled people are equal, there is an obvious fear of even the possibility of a man with prosthetic legs lining up with able bodied men and winning."
Having read a fair amount of coverage of this story, I know I have been struck by the number of sporting commentators who - whilst keen to sing his praises as disabled hero overcoming diversity - are absolutely adamant that Pistorius' blades give him an advantage, even though there is, as yet, no solid proof about this.

%3Ca%20href="http://marmiteboy.blogspot.com/2007/07/blade-runner.html">Marmiteboy also suspects a degree of disablism is at work;

"In my view, the reason there is so much opposition to Oscar's participation is that they couldn't bear it if he actually won. What a terrible thing that would be for the non-crip world an uppity crip beating them in a running race."
Other mentions have been made at %3Ca%20href="http://wheeliecatholic.blogspot.com/2007/07/pistorius-races-today.html">Wheelie Catholic and %3Ca%20href="http://cripwheels.blogspot.com/2007/07/updates-on-random-things.html">Wheelchair Dancer. There is %3Ca%20href="http://www.bbc.co.uk/dna/606/A24699900">a debate to be found on the %3Ca%20href="http://news.bbc.co.uk/sport1/hi/606/default.stm">BBC Five Live 606 pages.

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%3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/shock_horror.html">Shock! Horror!

  • Posted by Lady Bracknell's Editor
  • 15 Jul 07, 10:24 PM

Just a couple of random news stories for you from last week. They’re both pretty horrifying, but in very different ways.

Take %3Ca%20href="http://www.theargus.co.uk/display.var.1534846.0.drunk_horsejacker_leaves_two_injured.php">this one, for starters: I don’t use a mobility scooter myself. But, if I did, I suspect two tonnes of panicking shire horse galloping directly towards me on iron-shod hooves the size of dinner plates would be pretty high on my list of Traffic Hazards I Would Really Rather Not Encounter. I mean, jeepers, how scary is that? And they say passive smoking might be bad for your health…

An anonymous contributor to the %3Ca%20href="http://www.newsandstar.co.uk/opinion/viewarticle.aspx?id=519346">Carlisle News and Star has left me almost speechless with indignation.

Bench Police Are Talking Through Their Buttocks is the hardly-at-all contentious headline to the piece in which he (or she) decries Part III of the Disability Discrimination Act (you know, the bit which is intended to make public services accessible to thee and me) as being “designed to provide jobsworths with something nitpicking to poke their noses into”. “There must be some secret Whitehall department, ensconced in a bunker deep underground, that thinks up these barmy rules”, apparently.

And why the outpouring of vitriol? Because our calm contributor has discovered that 40 memorial seats in a cemetery in Nottinghamshire have had to be replaced because they are three inches lower than the “allowed minimum height”.

“People have been donating benches in memory of loved ones for years without, to my knowledge, anyone suffering serious injury as a result of resting their weary buttocks on them” fulminates our anonymous Mr (or Mrs) Angry.

Ok, so, several points here:

1. Yes, that’s right. The only possible thing you could do with a bench which is too low is to get rid of it. Because that makes much more financial sense than raising the height by putting some sort of plinth under it, doesn’t it?

2. I’d actually be surprised if the DDA applies to benches donated as memorials by the grieving families of the deceased. Private individuals don’t constitute service-providers. I imagine it would depend on whether the private individual has contributed a bench made to their own design, or just a plaque to be affixed to a standard-issue council bench. Er, in which case, surely said plaque could be unscrewed and re-affixed to the new taller bench, no?

3. Surprisingly, people who would be prone to injury if they tried to rise from too low a seat are Pretty Flipping Good at identifying low seats by sight alone. Standing is very painful for me, but I’ll opt for standing every time over being stuck in a low seat until the emergency services have had time to arrive with a hoist.

4. I’m not much given to sitting in cemeteries, to be honest. However, if I were, and the benches there weren’t accessible to me, then I don’t think it would be unreasonable of me to feel slightly miffed.

“And by the way, the cemetery bosses in question have also been informed they must create wheelchair access round all their benches and provide lighting for the seats” – er, I think we’re expected to be horrified by this.

I mean, have I missed something here? Is there some rule that no-one close to you can ever die if you’re a wheelchair-user? Or do wheelchair-users have the parts of their brains which register feelings of grief removed? Or, if you’re a wheelchair-user who’s visiting a cemetery, are you supposed to lurk quietly in the shadows so as not to upset people who are already grieving with your ever-so-in-yer-face reminder that Bodies Can Go Wrong?

Ah, but the best bit is yet to come. This is what made me drop my jaw and emit strangled noises of rage. Are you ready for this?

“…and ultimately the public suffer”.

Ladies and gentlemen, boys and girls, Ouch readers all, to this Cumbrian writer “the public” is a term which excludes “the elderly and infirm” and people who might want wheelchair access. Or lighting.

Which is funny because, up until this point, I had been labouring under the delusion that I actually was a member of the public. I use public transport: no-one tries to force me off the bus. But, no. Apparently, laws which are intended to make public areas accessible to me stop “the public” from “enjoying our imperfect but happy lives in peace”. How awful. And how very selfish of me. I may have to re-think my whole approach…

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%3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/the_mike_devenney_scholarship.html">The Mike Devenney Scholarship: opening doors for disabled students

  • Posted by Lady Bracknell's Editor
  • 14 Jul 07, 12:24 PM

Mike Devenney – amongst many other accomplishments, a Commissioner of the DRC – died very suddenly of pneumonia in 2004 aged only 45. In Mike’s memory, his family has established a %3Ca%20href="http://www.mikedevenney.org.uk/home.asp">scholarship fund in his name .

The fund aims to make an award of about £1000 every year to one or two ambitious disabled students in the UK, to help defray the extra costs they incur in comparison with their non-disabled peers.

Applications for 2007 have closed but, if you’re intending to be in further education in 2008/09, you might want to bookmark the site.

I count myself very lucky to have had the privilege of sitting in the front row of one of Mike’s presentations. The following quotation from his obituary in the Guardian sums up the Mike I heard speak:


"Most people could only understand Mike's speech through a third-party facilitator - but this did not detract from his communication skills. At a 1992 Rotterdam conference Mike asked if I would stand in as his facilitator. This involved Mike giving a few sentences at a time and then me repeating them to the audience. He began and I couldn't understand him, so he provided a repeat - but I still couldn't understand him. The third time around someone in the front row called out: "He's speaking in Dutch!"

By now back in English, Mike said: "Two lessons there. The first is you should never underestimate someone because they are disabled. The second is that all too often disabled people are only limited by the poor quality of resources available to them!" "


For more information about Mike’s life and work – including the full text of that obituary – go to %3Ca%20href="http://www.mikedevenney.org.uk/who-is-mike-devenney.asp">this link .

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%3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/bad_words_make_for_bad_days_1.html">Bad Words Make For Bad Days

  • Posted by Zephyr
  • 14 Jul 07, 12:24 AM

It's Friday the 13th, and my editor requested I write on the theme of 'bad disability days.' Truth be told, I don't have bad days. I have bad *periods*. Readers of %3Ca%20href="http://arthriticyoungthing.blogspot.com">Arthritic Young Thing know that I've had a migraine for the last year, and only recently started getting relief from a new drug called Topamax.
Almost every day for the last year has been a bad day for me. Fun, eh? But that's life with a chronic pain disorder.

I've also been blogging a lot about disability terminology. I think I'll share with you all my least favorite words that I've been called in the past. I don't mind being called 'crippled' or 'disabled', but by George, do those words from childhood bug me. They certainly did create some bad days for me when I was a kid.

When I was a wee tot in grade school, kids would run alongside of me and start walking like the Tin Man from the Wizard of Oz. 'Robot' and 'CP3O' were some of the clever titles thrown my way. Right. Because arthritics and robots both move stiffly. Brilliant. 'Stiffy' was also popular, especially when my classmates found out my middle name is Stephanie.

It dawned on me as an adult that some of those kids were actually trying to make friends with me with good-natured teasing. Some of them were just being jerks. Some of them were even flirting with me. What the hell kind of dating tactic is that? Treating someone like a freak isn't going to make them fall into your arms. It WILL make them want to hit you under the knee-caps with their walking stick.

I don't get little boys.

My boyfriend cheered me up immensely when I told him about those schoolmates of yesteryear. He turned to me and said "I hear those people fell down a mineshaft. Onto tall sharp spikes." Isn't he great? See why I keep him around?

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%3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/heard_said_thought.html">Heard - Said - Thought

  • Posted by Dave Hingsburger
  • 13 Jul 07, 10:55 AM

So many times in my life, I've had to watch what I say. The words that appeared automatically in my mind had to remain forver shut away. Well, not forever, forever - sometimes they came out along with roaring laughter after a pint or two at the pub. But this phenomena has been happening a lot more since I became disabled. I don't think that the moment I plopped my bum into a wheelchair the world got supider. No, it's just that people have said some spectaularly stupid things to me.

So, here is what I heard, Followed by what I said. Finally there's what I thought.

"Do you think that all people with Down Syndrome are angels sent to be among us?"

"I think there are good and bad in all of us."

"You, my dear are a buffoon."

*

"What have you learned about life now that you are in a wheelchair?"

"I've learned that people aren't different just because they roll rather than walk."

"I'm crippled, not mystical, and if I was an oracle, I'd want more of an offering than a simpering smile.

*

"Do you want me to pray for you?"

"God and I already have a conversation going."

"If I wanted you on you knees, it wouldn't be for praying."

*

"I saw another one of you guys today, he's got red hair, do you know him?"

"I don't know everyone who has a disability."

"Yeah, he's agent crip 17 and he's part of our sleeper cell here Canada. Drat we've been discovered."

*

"Didn't you find Christopher Reeve inspiring?"

"Well, I have differing views of disability, but he was a brave man."

"Superwhimp if you ask me, Virginal Hall is my crip hero - yeah I know you've never heard of her dumb twit."

*

"Can you still have, you know, relations?"

"My parents are still alive, yes."

"Let me show you."

*

"Don't you wish that you'd lived a better, cleaner life so you wouldn't have faced this."

"My disability isn't a result of moral decline."

"Put your face in a brook and don't look up until you're dead.

So this demonstrates some self restraint on my part. I'm wondering, has anyone else has spectacualry stupid things said to them ... what did you say, what did you think

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%3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/coming_out_as_bipolar.html">'Coming out' as bipolar

  • Posted by Crippled Monkey
  • 13 Jul 07, 10:35 AM

Hello. Whilst our fabulous guest bloggers are very much still here, I thought I'd pop my head above the parapet quickly to tell you about a new blog entry I spotted, which you really should read. The author of %3Ca%20href="http://backinabit.com/2007/07/coming-out/">Back in a Bit writes about his experience of 'coming out' to his family with the revelation that he's got Bipolar Disorder. In a wide-ranging post, the writer has a few points to make about how bipolarity is now often seen as 'fashionable' due to the number of celebrities professsing to it:

"Curiously, even though saying “manic depression” is out of fashion, being depressed, it seems, is spectacularly fashionable. In fact, Bipolar Disorder carries with it a certain (and ever-so-slightly annoying) celebrity prowess ... I have wondered whether, like being slim, the popularity of depression is a link to youth - for many, the teenage years are also amongst the most depressing they shall ever experience."

This is a topic that has been covered by Ouch's very own %3Ca%20href="/ouch/columnists/liz/291106_index.shtml">Liz Main in some of her columns in the past, too.

Check out this post - definitely worth reading.

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%3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/why_i_love_the_social_model_of.html">Why I Love the Social Model of Disability

  • Posted by Zephyr
  • 13 Jul 07, 01:17 AM

Just so y'all don't think I hate the Social Model just because I don't think it's perfect, today I'm going to talk about why I think it's a good thing. Here are some of the benefits I reap from the Social Model.

1) Curb Cuts - Here in Vancouver, almost all of the sidewalks have them. In NF, I was lucky if half the sidewalks had cuts. Unfortunately, I drove a scooter in Newfoundland, and it got pretty beat up from the floor scraping against the curb. Yikes.

2) No Stairs! - Unfortunately, this is the exception rather than the rule. As an arthritic who uses canes, I hate hate hate hate hate stairs. I honestly think the government should ban architects from designing buildings with stairs, and make them put in ramps and lifts instead. How's that for a militant crip?

3) Accessibility to public buildings - When I lived in Newfoundland, I had to leave my scooter outside of most shops and hobble inside painfully. I was not happy about that. The scooter was meant to save me undue pain, but the gigantic front stoops were driving my pain levels through the roof. Here in BC, most public buildings are level with the ground, thank the gods. Did I ever mention I love BC?

4) Government grants for work and school - The government is paying for a two-year web design course, books, tuition and a computer for me. They should, too. It's their lousy set-up that makes it so damned hard for me to get education and a job. With all this financial help, I'm only moderately behind the average person instead of WAY behind. I know that when I graduate, should I need assistance with work placement or wage supplementation, I can get that, too.

5) Free counseling, occupational therapy, and swimming - I'm very glad I don't have to pay for these things, because there's no way in hell I could afford them.

There you have it. Let it not be said that Zephyr doesn't support the Social Model just because she doesn't think it's the One Supreme Answer.

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%3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/all_i_want_is_lovin_you_and_mu.html">All I want is lovin' you and music, music, music

  • Posted by Lady Bracknell's Editor
  • 12 Jul 07, 08:25 PM

Imagine a world in which performances of live music were accessible to everyone. Where you could go and revel in things I (being elderly and completely un-cool) don’t understand like, er, “moshing”. Or in things I (being elderly and sensible) wouldn’t want to do, like standing next to a speaker pouring out decibel levels comparable to those produced by heavy machinery, and then actually being %3Ca%20href="http://marmiteboy.blogspot.com/2007/06/whistling-in-my-ears.html">thrilled by the evidence of damage to your hearing the next morning.

But it can’t be just Marmite Boy, can it? I mean, I know he’s keen and everything, but he can’t be supporting the live music industry single-handed. There are probably ever so many crips just desperate to spend their nights somewhere hot, sweaty and noisy, being jostled by people carrying insufficiently-rigid plastic cups full of warm lager. This sort of thing seems like fun when you’re young, right?

So. Imagine you live in a rainy city Oop North. There’s a music venue you’ve loved for years which has just received a substantial (and I do mean substantial) grant for a complete refurbishment and transformation. You’re chuffed to little mintballs (which is a Northern expression for being very pleased) so, in an unguarded moment, you offer advice on accessibility issues.

To your surprise, your offer is accepted. To your horror, you then immediately realise that your knowledge of super-duper state-of-the-art accessibility features is limited to those which do the biz for people with visual impairments. Oops.

So, what do you do? You remember that one of your friends is currently an Ouch guest blogger, is what you do. And you ask her very nicely whether she could perhaps see her way clear to asking all the lovely Ouch readers for their input.

And she agrees.

So, can you help? I bet you can. I bet all you youngsters (and Marmite Boy) have got loads of suggestions about what would make a music venue accessible to you. Leave them as comments on this entry, and you’ll make a saxophone-playing chap in that rainy Northern city very happy indeed.

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%3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/disability_models_continued.html">Disability Models Continued

  • Posted by Zephyr
  • 12 Jul 07, 02:13 AM

On Monday, I went to see my counselor at the local arthritis centre, and we shot the breeze. I really love our conversations, because he's a very frank, straight-forward kind of guy. I never get that 'helping the crips' vibe from him that I sometimes get from people who work with PWDs.

We got into discussing disability politics, and I told him about all the wonderfully interesting comments I got on my post about the %3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/social_vs_medical_disability_m.shtml">Medical Model vs. The Social Model of Disability. His take on it all really gave me some food for thought. Instead of weighing in with an opinion of those models, and which is the better one, he stated that all models really do is explain why disability happens, and what we should do about it. We have:

1) Religion - Various religions explain disability as the the will of God or the gods. Others describe it as karma or punishment. In order to improve our health, we need to pray, do good works, gives to charity, improve our karma, etc.

2) Medicine - Science says that illness happens because something isn't working properly in the body. We need to discover what isn't working, and fix it, or at least reduce the harm done to the body

3) Moral - People are visited with horrible diseases because they're bad people, and they deserve it.

4) Social Model - People are disabled because society isn't set up for bio- or neuro-diversity. It is society that creates disabled people, not disease.

5) Mystical/New Age - People get sick because their energy/chi is out of whack. If we do reiki/energetic healing/qui gong/yoga, we can improve our physical/emotional/spiritual bodies, and therefore become healthier.

I don't think any one of these models alone has the answer. I think each one has a portion of the truth (perhaps with the exception of moral), and combined, they all have tremendous potential to give PWDs an incredibly improved quality of life. Medicine+spirituality+accessibility+ethics=a damned good life. I'm all about taking a holistic approach to life, and that doesn't just include doing yoga! (Actually, I'll take a Tylenol 3 over yoga any day). I think it might not be a bad idea to take a holistic approach to dealing with disability as well.

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%3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/the_perilous_world_of_eggs.html">The Perilous World of Eggs

  • Posted by Nicola
  • 11 Jul 07, 06:38 PM

I hated eggs as a kid. Much of my Sunday mornings was spent scrounging mouthfuls of my dad’s cooked breakfast. I would succeed only to find the spoonful of fried produce shoved in my direction was tainted with egg, triggering the ever spectacular spazzy gag reflex. But years past, Sunday morning hangover breakfasts were consumed and I slowly came round to the frankly bizarre idea of eating potential baby chickens.

In any case, something led to me getting a frying pan out last night and pouring fork-prodded eggs into it. Seahorse mentioned weak whisking in her cooking advice and I assume that’s what it was. Only without a whisk. It took me a while to work out whether the yellow stuff on my leg was egg yolk or part of the tiny burn I sustained when I jumped, at the telly, the yolk flew from the pan and hit me on the shin. Whatever it was it serves as a sober reminder to us all never to cook in a wheelchair wearing only a Sleepy Sheep nightie. Particularly the Sheep nighty part, especially if the burn had been worse, “why hello Mr Paramedic”.

I would post a photo but my leg is stubbly and most of my hair removal products require that you have the full compliment of skin layers before you apply them.

Moving very swiftly on.

Last night, Tuesday the 10th of July 2007, I made my very first omelette. I do believe that is a Crippled Culinary Achievement. I only hope it is greeted with less scepticism by the editor than the First Time I Made Cheese on Toast ;-)

Oh and one last thing: Horse.*


*I had a £1 bet that I could finish another blog with that word. What can I say, I need money. I’m out of eggs.

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%3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/disability_photography.html">Disability Photography

  • Posted by The Goldfish
  • 11 Jul 07, 10:55 AM

Wheelchair Dancer has %3Ca%20href="http://cripwheels.blogspot.com/2007/07/hot-hot-hot-action-at-museum-of-sex.html">an excellent review of a New York photographic exhibition entitled Intimate Encounters by Belinda Mason-Lovering that "debunks the myth that a person with a disability has no sexual identity or desire, an assumption that has led to the repression of discussion or expression of sexuality."

Is that still a myth? You'll need to do some clicking on account of the frames, but the photographs are available to judge for yourself %3Ca%20href="http://www.mason-lovering.com.au/art/ie_07_05.html">on-line (click Exhibitions; Intimate Encounters; View Exhibition) - be warned; they include depictions of nudity and sexual activity which some people may find offensive. Ditto for the %3Ca%20href="http://www.museumofsex.com/">Museum of Sex, in New York, where the exhibition will be until the 16th September.

Looking at the pictures on-line, I totally share Wheelchair Dancer's reservations about the need to accompany each photograph with an explanation of the subject's impairment. I also felt that, while often extremely beautiful, some of the photographs are about the absence of shame as opposed to sexual or romantic identity. I think I probably liked the pictures more than Wheelchair Dancer did, but I understood her sentiment that

"The idea that we have sexuality is new and exciting only to the non-disabled (TAB?) world."

WD got to meet Belinda Mason-Lovering and says

"[She said that she] considers her job well-done if her art changes the mind of one able-bodied person. And that was very much the feel of the work. The disabled people were presented on their own terms, but the work was directed at educating the unsuspecting non-disabled audience."

Nothing wrong with that, but it does pose the question of what art about disability for disabled people might look like. Does it exist? Or is all the art we create about disability necessarily about educating non-disabled people? Anyway, do check out the exhibition as well as WD's review of it, in which she models some extremely nice shiny red shoes.

Perhaps there are some answers to be found back over in Blighty, where there's still a few weeks to see the best of the %3Ca%20href="http://www.mencap.org.uk/html/Snap/index.asp">Mencap Snap! competition 2007 entries at the %3Ca%20href="http://www.vam.ac.uk/">Victoria & Albert Museum. The annual competition "showcases stories and photos by and of people with a learning disability".

The exhibition closes on 22nd July and if you can't get to London, you see the photographs %3Ca%20href="http://www.mencap.org.uk/html/snap/snap_2007/Main.asp">on-line. Some of the pictures are really very beautiful, others are simply great fun. The themes are very much about people with intellectual impairments as opposed to being about their impairments or experiences of disability. No strong educational agenda; just a celebration of those lives.

• Visit %3Ca%20href="http://blobolobolob.blogspot.com/">Diary of a Goldfish

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%3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/so_you_have_a_son.html">So you have a son?

  • Posted by
  • 10 Jul 07, 02:38 PM

Social services are coming to assess my care needs on Thursday. It's only taken Adults and Communities 18 months to get around to seeing me. Funny how since I got an advocate on board things seem to be moving more quickly. Doesn't stop me feeling scared though. All sorts of 'what ifs' are going through my mind.

The biggest fear is "What if they take my son away from me?"
This is ridiculous because plenty of health workers have seen me in a far worse state than I am in at the moment. No one tried to take my son away when I needed intensive help from family for months after being in hospital. But that was because family was around, plus I was with a partner. Low priority.

Social services in my experience rely heavily on the supposedly limitless resources of family to cope with long-term illness. My relationship broke down. My Grandma has developed senile dementia so my Mum, who has her own health problems, can't be expected to be my full-time carer, as they would like. I don't know if I need a full-time carer even.

I've surprised myself with how I have adapted to single motherhood. The hard work is worth it just to see my son happier. But things could be so much better. I need to think carefully about what in an ideal world could be put in place to improve my health. Then I will need to ask for it.

They will ask me, no doubt, what my son does to 'look after mum'. I remember feeling sick last time this invidious little question popped up. My son is not a Young Carer. Been there, done that. He hated it. I told him after a few YC outings that he didn't have to go. I could see how he was struggling with having this label put on him. My son is a child... who like any other his age can take his plate out after dinner and be gently persuaded to put his socks in the laundry basket. Yes I could get him to do more. But I won't. I don't want him to have to learn how to cook just yet.

Actually, I know what I do want. I want a PA. I want one because I would like to be in less pain and have more energy to do enjoyable things with my son. The stuff a PA could do is really grinding me down.
So there you go. That's what I want. Now I just have to convince them.

• Visit %3Ca%20href="http://beautyoffensive.blogspot.com/">The Beauty Offensive

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%3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/fellow_bloggers_with_arthritis.html">Fellow Bloggers With Arthritis

  • Posted by Zephyr
  • 10 Jul 07, 08:14 AM

I was happy and a bit surprised to find some other bloggers out there with arthritis. I'm not sure if any of them have Juvenile Arthritis like myself, but I'd be happy to be proven wrong, though not happy they have Juvenile Arthritis, not that I'm saying it's a tragedy or anything, of course. We all know by now that although I'm gung-ho for Disability Pride, I hate this damned disease. Anyhow, on to introducing the bloggers.

Disgruntled Ladye from %3Ca%20href="http://everything-and-nothing-at-all.blogspot.com/">Everything And Nothing At All describes herself as: "A Southern gal--back in the South again. Still a thinker and probably called a bitch, but who cares?" In %3Ca%20href="http://everything-and-nothing-at-all.blogspot.com/2007/06/disabled-parking-abuse.html">Disabled Parking Abuse, she rants about a neighbor who feels comfortable parking in the disabled spot at her apartment building.

I am more than annoyed. While I don't need the space today (or yesterday), at any moment my body may decide that it doesn't want to function properly. When that happens, the ability to use the disabled parking space really makes a difference in my ability to take care of things myself.

Corry from %3Ca%20href="http://experiencingrheumatoidarthritis.blogspot.com/"> Experiencing Rheumatoid Arthritis is 48 year-old home-maker from Lower Alabama, US. She has some excellent words of advice for people with RA in %3Ca%20href="http://experiencingrheumatoidarthritis.blogspot.com/2007/06/now-what.html">What's Up?

The main thing in all of this, however, is not to loose courage and faith. For those of you just diagnosed with RA, take this from this ol' gal, who has been living with it for 19 years now: the meds these days are so good, you won't have to live in and with pain anymore, and the deformities can be stopped before they happen!

Lene Anderson of The Seated View is from Toronto and lists hers interests as talking, thinking, laughing, writing. reading, movies, and photography. Lene has written many wonderful posts, but %3Ca%20href="http://theseatedview.blogspot.com/2006/10/displays-of-affection.html">Displays of Affection is the one that really struck a chord with me.

This bloody thing – by which I mean the arthritis/pain/damage/injuries – has taken dancing, traveling to other countries, using my manual wheelchair, traveling in a regular car, typing, going to the movies, knitting, writing by hand, taking long walks, etc., etc., ad nauseam, and now the blasted son of a flea-ridden camel has taking hugging?? How did this become my life?

I applaud her for having the bravery and honesty to talk about the grief that comes with loss of mobility and pain. There's a huge difference between grieving and being self-defeating, believe me. I think Lene knows very well where that line is.

And finally, we have Charles Dawson, retired blogger, at %3Ca%20href="http://charlesdawson.blogspot.com/">The Meanderings of a Politically Incorrect Crip. Take a look at his 'lighthearted guide to the history of arthritis treatments down the ages' starting with %3Ca%20href="http://charlesdawson.blogspot.com/2006/05/wilder-shores-of-arthritis-fit-first.html">Fit the First.

• Visit %3Ca%20href="%3Chttp://arthriticyoungthing.blogspot.com/%3E">Arthritic Young Thing
*May contain adult content*

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%3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/feeling_young_feeling_fiesty.html">Feeling Young: Feeling Feisty

  • Posted by Dave Hingsburger
  • 9 Jul 07, 05:55 PM

I LOVE a protest. Always have. Always will. I remember being part of one of the very first disability protests in the city of Toronto in Canada. Transportation was a real sore issue for many with disabilities and at the time I worked ad a classroom assistant with students who had physcial disabilities. They were a really bright group. But, my, oh my, they were passive. The world came and went without much comment from them. True enough it was difficult just to get through their days mainstreamed in a high school and dealing with teenage - things. But still.

They had their first tast of militarism when I encouraged them to complain about the schools lack of access to the field, not by writing to the school board, but by writing to the media. One media story about a school that had students with disabilities that wasn't completely accessible and the offending curbs were torn down and a couple of acres of space became accessible. And I got my first warning - apparently I wasn't there to educate them about disability politics, they were there to learn math. I joked that all I taught them was to put two and two together. The warning went in my file.

Then I heard that there would be a rally outside Queen's Park (the Ontario Legislature) of people with disabilities to demand better access to transit and that transit hours expand to equal that of the other transit in the city. All the students had complained about the transit. I pushed and prodded them to go to the protest. They said that the couldn't because it was during school hours. I told them that the reason it was during school hours was because transit stopped at 5. "Take the day off school, go protest." I told them I was taking the day off sick and would be there.

I was called to the principals office. She was mad. She told me that I'd be fired if I took the day of the protest off. I told her that the union might have something to say about her threat. Then she said, "If I see you on television with our students there will be hell to pay."

I don't know how much she paid Satan but I knew she saw us. She couldn't miss us. There may have been 20 of us all together. The low number is explained two ways. First this was early days of the movement in Toronto. Second, the transit company had a lot of drivers sick that day so they had to cancel the rides of their riders to the protest of the drivers working hours. One of the students, Tony, was desperate to be there. He wanted to protest. But his transportation was cancelled.

Twenty minutes before the protest ended there we saw Tony in his electric wheelchair with a look of such determination on his face, he was going to make it. And he did. Almost burned out his chair, but he made it.

I loved those days of protest. Having that kind of zeal for and idea or a cause is better than drinking a Red Bull for giving me energy. Years fall away and I get all jazzed by an idea. It's kind of like that for me now. Over on Chewing the Fat someone handed me a cause on a platter. I'm blogging and organizing and getting letters written. It's FUN. It's FUN to be mad at someone. To take someone on. To shake my fist at the sky.

I care that we win, of course, but it's just good to be 'got up' over something again. Suddenly I'm not the old guy who just wants to take a nap in the afternoon. I'm on fire. I am cripple hear me roar!!!

Oh, by the way, that protest with the kids from school. Amazing. We won. Three days later the government announced funding and extended hours. Matching hours with regular transit. It had a huge effect on the students. And I got another letter in the file.

• Visit %3Ca%20href="http://davehingsburger.blogspot.com/">Chewing The Fat

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%3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/unhealthy_activities.html">Unhealthy Activities

  • Posted by The Goldfish
  • 9 Jul 07, 04:15 PM

The Autistic Bitch From Hell at %3Ca%20href="http://autisticbfh.blogspot.com/2007/07/useless-readers.html">Whose Planet is it Anyway? blogs about an article in which it is implied that a fixation on letters is a bad thing for an infant and that children with autism should be encouraged to focus instead on faces and social actvities. I'm not entirely convinced of ABFH's analysis of what is said, but the points raised in her post and the subsequent discussion are very interesting.

ABFH describes how as a child, she was fixated by letters. Her parents encouraged this and as a result she learnt to read extremely early and took tremendous pleasure from books as a child. She feels that this might now be considered as a bad choice on the part of her parents, robbing her of that pleasure as well as the academic success it lead to. Historically, women who were sick or rebellious (which was often understood to be the same thing) might be thought to suffering the effects of too much reading. There were all manner of activities which were feared to disrupt the fragile balance of the female mind.

Indeed, there are still echos of this in our attitude towards the health of women today, but there are even more activities which are felt to be similarly dangerous for disabled people. Not because of any actual risk, but because of this vague sense that something might be a threat to our supposedly fragile wellbeing.

ABFH, %3Ca%20href="http://ballastexistenz.autistics.org/">Ballastexistenz, Joel at %3Ca%20href="http://thiswayoflife.org/blog/">NTs are Weird and other bloggers with autism have frequently written about behaviours which are seen as unhealthy or anti-social for no particular reason. This weekend Joel made me laugh with how we are misinformed of the social rule that %3Ca%20href="http://thiswayoflife.org/blog/?p=206">men don't talk in the gents.

Meanwhile, Dave has written %3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/invitation_to_party.shtml">here and over at %3Ca%20href="http://davehingsburger.blogspot.com/">Chewing the Fat about the attitudes towards people with intellectual impairments and the way in which their romantic and sexual relationships being seen either as entirely trivial or outright dangerous.

Probably the weirdest example of this sort of thing from my own experience comes from my first beginning to use a wheelchair. Having some walking as I do, I had some very strange comments about the harm this might cause. Goodness knows it took enough effort to shed my own daft reservations about the whole thing, only for it to be suggested that if I started using a wheelchair, I might give up walking altogether!

I kind of understand the folk psychology around acquired dependence on a thing, but a wheelchair? I mean, I'm all for wheelie pride and everything but with our lumpy bumpy narrow-doored world as it is, walking in circumstances where walking is comfortable and safe is so much less hassle. You wouldn't use a wheelchair unless you had to, but if you do have to, then it is a liberation.

Mind you, some disabled people really do push the envelope. Elizabeth at %3Ca%20href="http://elizabethmcclung.blogspot.com/">Screw Bronze! has recently defied all expectations to take up %3Ca%20href="http://elizabethmcclung.blogspot.com/2007/06/wheelchair-boxing-think-its-freak-show.html">Wheelchair Boxing, of all things. I'm really not sure that's the healthy thing to do, but I have a mean right-hook for anyone who tried to stop her.

• Visit %3Ca%20href="http://blobolobolob.blogspot.com/">Diary of a Goldfish

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%3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/a_warm_welcome.html">A warm welcome...

  • Posted by Lady Bracknell's Editor
  • 8 Jul 07, 09:29 PM

... to the crip blogosphere to Jemma at %3Ca%20href="http://www.diaryofamonkey.blogspot.com/">Diary of a Monkey.

Jemma says she has been inspired to "properly blog" by the Ouch bloggers. She says, "If they can do it, so can I". And she's not kidding: this girl really can blog. Check out her %3Ca%20href="http://http://diaryofamonkey.blogspot.com/2007/07/hats-and-pubs.html">post about being asked to remove her hat in pubs.

I am thrilled to bits that I've been part of a team of writers who have helped to bring forth a new disabled blogger. I couldn't be more pleased.

But is Jemma* the only one? Or are there more of you out there? If you're disabled, and you've started a blog up as a direct result of reading the work of the Ouch guest bloggers, Crippled Monkey wants to hear from you. Drop him a line at ouch@bbc.co.uk.

*That'll be the Jemma who is now hugely embarrassed that I've publicised her blog on Ouch, then. Sorry, Jemma. The monkey made me do it. Honest.


• Visit %3Ca%20href="http://labracknell.blogspot.com/">The Perorations of Lady Bracknell

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%3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/bear_with_me.html">Bear With Me

  • Posted by Zephyr
  • 8 Jul 07, 08:34 PM

I feel like a kindergartner when it comes to this disability rights movement stuff. It seems like every other disability blogger out there knows way more than I do. I haven't read one single website or book about disability rights or history. All I know is what I've gleaned from other bloggers, Ouch!, news stories and such. My knowledge is woefully inadequate.

I hope you'll all have a little patience with me if I use the wrong words sometimes. I'm only now finding out that calling someone a spastic or a spaz is equivalent to the N-word, at least in the UK. Even if I don't mean it in a bad way, like 'Hey, so-and-so is spastic' the same way I call myself arthritic. Am I gonna get yelled at for that? It was just an example!

If I use words that are offensive or inaccurate, don't hesitate to call me on it. I can take it. The same goes for ablist statements. I'd far preferred to be called on being ablist than have people let me carry on being ablist. It hurts like hell to know I did something ablist, but at least if I know, I can change it.

Since I don't know much about the disability rights movement and our history, can Ouch! readers bombard me with some web links and book titles, please? I tried searching my library, but I had no idea what to look for. Many thanks.

• Visit %3Ca%20href="%3Chttp://arthriticyoungthing.blogspot.com/%3E">Arthritic Young Thing
*May contain adult content*

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%3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/see_the_ability_see_how_we_can.html">"See the ability. See how we can work together."

  • Posted by Lady Bracknell's Editor
  • 8 Jul 07, 04:15 PM

On one of my regular meanders through the farthest reaches of the information superhighway in search of disability-related websites, I came across %3Ca%20href="http://www.connect-ability.com/index.php">this.

Here, according to the %3Ca%20href="http://www.connect-ability.com/about.php">“About this Program” page, is what Connect-Ability is/does.

“Connect-Ability began in late 2005 with a federal grant to the State of Connecticut to identify and remove barriers to employment faced by people with disabilities. This five-year, multimillion dollar systems change grant involved a detailed look at the State's employment and disability services infrastructure in order to identify problem areas and implement lasting solutions.

Connect-Ability has two primary customers:
* Employers of all sizes and in all industries who are seeking qualified workers
* People with disabilities of all ages who are seeking employment for the first time or who want a new challenge.

Our program does not directly provide services to match individuals with specific jobs. Instead, our efforts are targeted at removing the barriers which keep our primary customers from finding one another. These barriers include, but are not limited to, low expectations, the transition from school to work, inadequate transportation, and the actual process of recruitment, hiring, and retention.”

I fully expected the site to be patronising and mushy. But it's not. Granted, it’s possibly a little saccharine for British tastes but, then, it’s not been designed for a British audience.

The four (soon to be six) videos of the featured working disabled people are cleverly scripted so as to be up-front about the fact that they have impairments, and what those impairments are, whilst simultaneously leaving absolutely no doubt that they are all very effective in their chosen careers.

“A person who protects the country’s data (who can’t hear)” is very different from “a person tragically-afflicted by hearing-loss to whom some remarkably philanthropic business has been charitable enough to give employment”.

And, whilst this concept may not be rocket-science to you and me, there are some people – on both sides of the equation – on whom it’s going to have an unanticipated and very powerful impact. These are just people doing jobs: their impairments are largely irrelevant to their professional success. You’d have to be very firmly wedded to the tragedy model of disability indeed to respond to any of those videos by saying, “Oh, bless them! Aren’t they brave?”

But it’s not all about the videos by any means. There’s a lot of information on the site. Information about the process of getting a job; about how you might travel to and from your place of work; information for employers about a) why they would want to employ disabled people and b) the best way to attract applications from them; and pages for young disabled people who are just leaving school or college, with corresponding advice for their parents. This stuff has been very professionally and thoughtfully put together, and is well worth a read, regardless of where you’re based. (Although do bear in mind that the detailed information about employment law is based on the ADA rather than the DDA: there isn’t a direct read-across from one set of legal provisions to the other.)

I’ve been working in the disability and employment field a long time. It takes a lot to impress me. I’m seriously impressed by Connect-Ability.

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%3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/the_importance_of_knowing_my_l.html">The Importance of Knowing My Limits & Boundaries

  • Posted by Zephyr
  • 8 Jul 07, 01:59 AM

It occurs to me that lately I've been very focused on what I can't do. It's even in the title of my last post here on Ouch!I don't think it's completely caused by self-esteem issues related to the disability, although I certainly know I have those. It's important to me to figure out exactly what I can do, what I can't do, and what I can do with help or modifications. For some strange reason, I seem to want to figure out what I can't do first. I guess I want to get the bad stuff out of the way, maybe.

Ah, hell, that's not true. I just want to figure out what I can't do so I can tell people. That way, when people ask me to do things, I can give them a definitive answer. I'm mostly thinking of my partner in this regard. Despite having been with him for three years, I'm still trying to figure out what I can and can't contribute to the relationship.

I'm also trying to discover what my boundaries are in regards to my arthritis. In %3Ca%20href="http://arthriticyoungthing.blogspot.com/">Arthritic Young Thing today, I posted:

I have also come to the conclusion that I am not a burden. It is true that my illness can be a burden and a bitch sometimes. But I am not my disability. It is one part of me, an important part, a very troublesome part, true. It is a burden I get to bear. Anyone who loves me will help me bear it, at least some of the time. I don't ask them to bear it all the time. That's for me to do. But anyone who cares about me will never tell me I am a burden, or they won't have a place in my life anymore. If I sound militant about it, it's because I spent my childhood being treated like a burden. I won't put up with it anymore.

I've had very flexible boundaries all my life, and am a very forgiving person, and it's often resulted in me being unnecessarily hurt. I've learned that I have to take a stand against harmful behavior directed towards me, even from people I love.

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%3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/things_i_cant_do_for_the_envir.html">Things I CAN'T Do For the Environment

  • Posted by Zephyr
  • 8 Jul 07, 01:29 AM

I read Disability Bitch's %3Ca%20href="http://www.bbc.co.uk/ouch/features/b1tch/060707.shtml">post yesterday and just about laughed my ass off. Earth 2.0! With no hills, mountains or storms. What an fabulous idea!

It got me to thinking about some ways in which I am forced to be less environmentally friendly because of my disability. Take transportation. Everybody knows that walking or cycling is better than driving or taking the bus, right? Well, my friends, I'm resigned to polluting the Earth a bit more than non-disabled folks, because if given the choice between walking or being transported in a vehicle, we all know which one I'm going to pick. The one that drives my codeine consumption down. I'd love to cycle to the shops, but my knees just don't bend that way.

We all know that it's better to throw on extra clothing instead of turning up the thermostat, don't we? Turning up the thermostat wastes energy. Well, call me a wastrel, because throwing on extra clothing doesn't help my joints near as much as cranking up the thermostat to a roasting 20+ Celsius. My friends always accuse me of trying to get them out of their clothes when they visit, because my apartment feels like a sauna in February. If putting on extra clothing helped, that'd be great, but my joints still feel stiff and creaky, even with two pairs of socks and three shirts.

There's also my meat consumption. Vegetarianism is better for one's ecological footprint, but if I go for longer than a week without meat, I turn cannibalistic. I'm not kidding. I get hostile, irate, and cranky. I have intrusive fantasies of tearing into people with my teeth and claws. You know you need meat when your loved ones start looking like food sources. I know a lot of people advocate vegetarianism or raw food for arthritics, but I go crazy without meat in my diet.

I do what I can to live an environmentally-friendly lifestyle, but I know that my disability prevents me from doing certain eco-friendly activities. I'm OK with that. It's all about doing what you can, when you can.

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%3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/what_disables_me.html">What Disables Me

  • Posted by Dave Hingsburger
  • 7 Jul 07, 10:37 AM

When I saw the title for Zephyr's post %3Ca%20href="/blogs/ouch/200707/what_makes_one_disabled.shtml">What Makes One Disabled I was immediately intrigued by the question. Being a blogger means automatically that I am a bit egocentric and this was proved here. Before even reading the post or seeing who it was by, my mind was flying. How would I answer that question.

Stop now if you hate confessional writing.

I am disabled, in many ways, I realized to myself. But none of those ways has much to do with my wheelchair. I am disabled in the ways that humans are often disabled. I've become hobbled by life, taken down by circumstance and felled by fear. As an abused child I learned early the need to close off sections of my heart. I learned to keep parts of me safe from others who had power over me. I learned to lock away the softest and tenderest part of my soul. I spent much of my time safeguarding my sense of self and my capacity to feel.

Trouble is, somewhere in my teen years I lost the key. I've banged on the door, trying to wedge it open but it stays resolutely shut. I have lost the capacity to be fully open to others, to fully trust anyone, to give completely of myself to another. Even now, in a relationship that approaches 40 years, we've both made peace with the fact that most of me will have to compensate for all of me.

But there's more.

Really, if you hate this kind of storytelling, it's ok to click away, you won't hurt my feelings - only because I'll never know.

Somewhere, there, in the murky past. I came in contact with fear, bone deep fear. Like depression, fear is also a disabling condition. It prevents me from trying much, gets in the way of the taste of food, hides like a guilty thought behind most dreams I have for myself. Many are surprised to find out that I'm shy, that I fear the spotlight, that I don't much like being looked at. I put myself forward, I lecture to thousands of people a year. But each accomplishment comes after i've wrestled anxiety to the ground and gone on. The victory to me is sweeter if others have no idea of the cost.

So there you have it. I am crippled by a heart that works at less than full capacity. I am weakened by my battles, daily, with fear.

What on earth do wheelchairs have to do with disability?

What on earth does sight and sound and sensation have to do with disability?

I'm sure I don't know.

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%3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/environmental_helpers.html">Environmental Helpers

  • Posted by Zephyr
  • 7 Jul 07, 02:16 AM

A little while ago, I posted %3Ca%20href="http://arthriticyoungthing.blogspot.com/2007/06/things-caretakers-do-that-bug-hell-out.html">some things caretakers do that bother me in %3Ca%20href="http://arthriticyoungthing.blogspot.com">Arthritic Young Thing. Today I'm going to talk about how they help me stay green.

First, a little note about lingo. Some people hate the terms caretakers or caregivers, because it assigns too much power to the caretakers, and makes them sound like noble heroes. I think the preferred term is personal assistant nowadays. However, I don't have any paid help. The person who helps me is my boyfriend. Personal assistant sounds a bit too stiff and official. Caretaker does assume that he takes on full responsibility for me, which certainly isn't true, but I haven't found a better word yet. Maybe helper? Any suggestions?

Anyway, I'm really glad to have PAs and/or helpers, because without them, I wouldn't be able to do a lot of environmental-friendly activities. There's no way I could lug a box of recyclables down to the curb for pick-up. I couldn't get my personal papers to a paper shredder by myself. Composting sure would be a bitch, having to go out in the cold and mucking around with soil, bending over and getting dizzy. I sure am glad the boyfriend does that!

On days when I have to stay in bed, boyfriend waters all the plants for me. Plants detoxify the air and promote healthier respiration, which is good for me, being on Enbrel, a drug which promotes respiratory infection. I must note that I am the primary plant caretaker, however. On laundry days, boyfriend hangs our clothes up to dry in the house, which saves energy and creates less pollution . Next winter I think we might be putting plastic sheets over our windows - our apartment is full of bay windows, so weather-proofing would definitely save energy and hold heat in.

It's been a while since I had a paid PA, so I have no idea if they'd help me with those sorts of things. My last PA certainly did, but she was a friend of mine that I happened to hire. I probably wouldn't hire a PA unless they agreed to help me with green activities as well as household chores. I am fortunate that I have a big strong partner who doesn't mind taking care of the environmental stuff. I want to live green, but damn, it isn't easy for people with physical disabilities, is it? Living green involves an awful lot of physicality, something that I've never really seen addressed by the environmental movement. Oh well, give 'em time. They're still young. In the meantime, I'll fall back on the advice of my Occupational Therapist: If it's too hard or too painful, delegate it!

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%3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/post.html">Doing it naturally

  • Posted by
  • 6 Jul 07, 02:45 PM

Reading about %3Ca%20href="http://www.liveearth.org">Live Earth this week, I have a checklist in my head that makes me feel like a super polluter.

Every time I step in a taxi it’s one more car clogging up the roads. When I run a bath, I know I’m using far more water than if I could just have a quick shower. Switching on the tumble dryer I wish I could manage to peg out the washing instead.

The truth is, there are some Green options that just aren’t an option. But for all the not-so-Green activities my disability makes a necessity, I can honestly say I’m more environmentally aware through being disabled.

In my case even the very process of becoming ill led me to gradually re-engage with the world in a more eco-friendly way. Yes, I suddenly couldn’t walk and cycle everywhere, and I find energy-saving bulbs a real headache. But when recovering from the depression that nearly finished me off, I found myself drawn to nature magazines and programmes, as I needed to feed my mind positive images. I didn’t have the concentration for books and still don’t much of the time, but give me a wildlife magazine and I’m happy.

Reading about the natural world has progressed to learning more about how we are damaging the planet, and how we can all limit this damage. And I’ve found that although I can’t do everything I can do the following:

Buy second-hand or Fair trade clothes
Wash clothes on a low temperature
Only boil the water I need (which has the added bonus of making the kettle lighter)
Switch to using fewer chemicals in the home
Sort the paper and glass recycling crates with help from my son
Encourage my son to be interested in the natural world, to grow things, to look after things
Stop buying so much stuff
Recycle plastic bags from my online order back to the supermarket

The house I rent also has good draft proofing, a no junk mail sign, and a rain tank in the garden. The plants have a fighting chance of surviving since I started using it, as collecting rainwater involves no bending. Plus it’s really near the plants that need watering.

Having a chronic illness forced me to slow down, to notice things more. It was only through becoming disabled that I got into photography. It’s why I called my blog The Beauty Offensive. And it’s why I now care very much about the environment. I can’t say I thought about it all that much before I became disabled.

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%3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/viva_frida.html">Viva Frida!

  • Posted by The Goldfish
  • 6 Jul 07, 11:57 AM

Two FridasThanks to Blue at %3Ca%20href="http://thegimpparade.blogspot.com/2007/07/frida-kahlo-celebrating-100th.html">the Gimp Parade, I learnt that today is a hundred years since the birth of disability icon, Frida Kahlo. As Blue says, Kahlo is arguably the most famous disabled woman who has ever lived. She also remains of the world's most famous women artists and her life was the subject of the very fine 2002 movie, Frida, starring Salma Hayek.

Blue has some of the pictures and further links to her works in galleries through the world can be found at %3Ca%20href="http://www.artcyclopedia.com/artists/kahlo_frida.html">Artcyclopedia. There's also a review of the Frida Kahlo exhibition at the Tate in 2005 up at %3Ca%20href="http://marmiteboy.blogspot.com/2005/10/frida-kahlo.html">Marmite Boy on Toast.

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%3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/what_makes_one_disabled.html">What Makes One Disabled

  • Posted by Zephyr
  • 6 Jul 07, 01:27 AM

Wow. There have been quite a storm of comments following my most recent post about the Social vs. the Medical Model of Disability. It appears the Medical Model isn't very popular anymore, because, as I understand, it treats PWDs as abnormal freaks who need to be cured and normalized, or otherwise put away in institutions. That doesn't sound very medical to me. That sounds like prejudice.

When I wrote about supporting the Medical Model, I was thinking more along the lines of this excerpt from Wikipedia:

The medical model of disability is a model by which illness or disability is the result of a physical condition, is intrinsic to the individual (it is part of that individual’s own body), may reduce the individual's quality of life, and causes clear disadvantages to the individual. As a result, curing or managing illness or disability revolves around identifying the illness or disability, understanding it and learning to control and alter its course."

I fully support the Social Model of Disability, but even if the whole world were fully accessible, my condition would still be disabling. There would still be a lot of regular activities closed off to me because of my arthritis. I still wouldn't be able to work outside of the home. I'd still have to take to my bed a lot. I wouldn't be able to go out dancing. Hence, I support medical science looking for better treatments and cures for arthritis. I can accept my disease, and embrace Disability Pride, but I'd still prefer to not have arthritis. My quality of life would be far better without it. I know there are lots of PWDs who don't feel the same way, and that's great. To each her own, I say.

Societal prejudice does greatly increased how disabled we are, but I think that in some cases, the disease alone can be disabling.

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%3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/invitation_to_party.html">Invitation to Party

  • Posted by Dave Hingsburger
  • 5 Jul 07, 10:04 PM

I'm going to dinner! And I couldn't be more excited. Those who know me know that I'm not very social in person. In fact, I'm quite shy. I don't socialize much, by choice, and prefer watching BBC box sets here at home. So this excitement isn't quite the norm. But in today's post we got a letter from a town in the States that I don't recognize. I openned it and was surprised to find a letter, written in childish script it couldn't have been more adult. It was from a couple with intellectual disabilities that I met over ten years ago.

I had met them when consulting to the agency that supported them. The agency wanted to go from a 'no sex' policy to a policy that welcomed relationships. It had been fun working with the agency and we struck an advisory committee to oversee the process, this couple had been on that committee. They wanted to marry so badly, they wanted to pledge their lives to each other. They came out of the institution as a couple and move into an agency that didn't allow their relationship room to grow or flourish.

Now, times were changing, attitudes were finally catching up to these two - who always knew what love was, even if agencies didn't. They married. I've visited with them a few times, had dinner once a long while back. But their letter said that they were about to celebrate their 10th anniversary and they wanted all those people there who supported them, who helped create a place for them in the world.

I'm going.

We have nothing scheduled in that area, but heck, it's summer, a wee trip sounds fun. I need these moments. Over the last several years I've worked hard to bring sexuality and relationships to the table, to have agencies understand and discuss the adult rights of people in their care. And now a couple is celebrating their tenth anniversary. A couple that others mocked. A love that people disrespected. A relationship thought cute - not serious. That relationship hits ten years. Ten years.

So, I'm going to the party.

Joe's book the dates and got mapquest to figure the route.

Their invitation is hand made. It's a blue heart, ribbons are taped at each side and the word 'love' is at the bottom. Turn it over and it says: Celebrating !0 years of marriage and 20 years when they wouldn't let us.

And in case we didn't get it it says in red pen scribbled on the bottom.

That's 30 years.

I'm going to the party.

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%3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/the_joy_of_sticks.html">The Joy of Sticks

  • Posted by Lady Bracknell's Editor
  • 5 Jul 07, 09:25 PM

Handy things, walking sticks. (I have, oo, several. They're made out of lucite in lovely colours. Ok, so not everyone wants different sticks to match different outfits, but it keeps me amused. And it does mean total strangers come up to me to ask me where I got my stick from rather than to ask me what I’ve done to my back. Or my leg. Or my foot. Because people are never quite sure why someone might need a walking stick, are they?)

Depending on how lame I am on any given day, I’ll use my stick differently. There are times when I can walk without putting much weight on it at all. But I still wouldn’t leave it at home. I can’t manage without it if I have to stand still for any length of time and, no matter how (relatively) frisky I’m feeling, I need impatient motorists to understand that I really can’t break into a run just because the lights have changed. Also comes in useful when the only remaining pot of yogurt on the top shelf of the fridge cabinet in the supermarket is out of hands’ reach: I’ve corralled many a rogue yogurt pot into my shopping basket with the crook end of my stick over the years. (Oh, yes. Is my life full of incident, or what?)

So, a good thing to keep handy. You never know when one might come in useful. If you don’t have a stick constantly to hand yourself, you might want to ask yourself how you would have fared in the following two scenarios?

In Surrey, an 81 year old woman used %3Ca%20href="http://icsurreyonline.icnetwork.co.uk/surreymirror/surreyheadlines/tm_headline=woman--81--fends-off-sex-attacker-with-stick&method=full&objectid=19254732&siteid=50101-name_page.html">her walking stick to fend off a 22 year old man who, it’s alleged, was sexually assaulting her . Good for her. Gentlemen, if you will insist on dangling your dinkle in front of a lady possessed of a stout walking stick, don’t be surprised if she defends herself with the first thing which comes to hand. It might not be only your street cred which suffers irreparable damage.

Found a deadly viper lurking in a bunch of flowers which has been delivered to the intensive care unit in which you’re an 80 year old heart surgery patient? No problem. Just beat it to death with your %3Ca%20href="http://timesofindia.indiatimes.com/Cities/City_Supplements/Bombay_Times/Heart_surgery_patient_kills_snake/articleshow/2094262.cms">walking stick. “I was fighting for 10 minutes before I managed to kill it”, says Croatian, Miko Vukovic. Crumbs. I mean, say what you like about the NHS, but you can at least be reasonably certain you’re not suddenly going to find yourself locked in deadly battle with a poisonous reptile. (Oh, ok. Yes, you may insert your own jokes here. I haven’t. I’m too nice and respectful. Ahem.)

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%3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/social_vs_medical_disability_m.html">Social vs. Medical Disability Model

  • Posted by Zephyr
  • 5 Jul 07, 08:10 AM

I don't believe wholeheartedly in the Social Model of Disability. Or rather, I don't think it's the only answer. There, I said it.

I believe that for a lot of disabled folk, the only thing that makes them disabled is the barriers put up by society. If society would just put up ramps and tear down prejudice, a lot of people wouldn't be disabled anymore. But you know what? I still would be. I have a chronic pain disorder. No amount of social and civil justice is going to change that. It would help me a great deal, but at the end of it all, I would still be stuck with a debilitating condition I don't want.

Nope, I wholeheartedly embrace the Medical Model of Disability as well. I don't see why the two models can't be complementary. Granted, I don't think the Medical Model is always applicable to certain disabilities or people. I know there are people with conditions like Cerebral Palsy or Autism who don't want to be cured, who want to live and thrive with their respective conditions. I support that. But I think if you were to take a poll of people with conditions like mine, you'd find that most or all are gung ho for a cure. I don't think anyone wants to live with degenerating pain.

The problem with the medical establishment is that they paint all diseases with the same brush. It never occurs to them that some people don't want to be cured.

But anyway, I hope no one thinks I'm a traitor to the Disability Rights Movement. I see no reason why I can't support both points of view.

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%3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/keeping_in_touch.html">Keeping in Touch

  • Posted by
  • 4 Jul 07, 06:50 PM

It was my friend's birthday the other day so I gave her a call. Last year, and probably the year before, I couldn't phone her because I was too ill. So I texted. I do text a lot, and it can be great for those times when you can't manage a phonecall, but phoning is important too as I can't often see my friend in person.

This year it really meant a lot to speak to her. I half expected her to be out for a meal, but no, she was at home with a cold. I think I may have cheered her up and I may even have made her laugh. Having spent a long time unable to communicate with friends it always feels good to make someone laugh again.

My friend and I go back 23 years so that's a lot of history. We are both mums, and the fact that I was well enough to chat on her birthday and catch up with all her news felt good. I wasn't able to do this simple thing for so long and I feel bad about not being there for her.

We had not spoken for quite a while. When you are living with a condition like M.E. that affects your ability to keep in touch, months can slip by quite easily. You know you are limited by your health and can't have an exactly rocking social life, and so you worry about friends slipping away.

You can get resentful quite easily on bad days, thinking "Why hasn't so or so been in touch for so long?" People always have an explanation, and sometimes it is reasonable and makes instant sense. Major attention-diverting life events I tend not to argue with, for example. Then there are the minor "I've been really busy" type responses.

So you get to learn who your friends are. But I have also learned not to be dependent on calls and, having been in the wilderness for a while, relearned how to be a better friend. To make calls sometimes, even if I haven't felt well enough, because it will nurture a friendship that IS important to me. The afternoon chat I had the other day was the best I've had in ages. We both had a good old natter.

My condition makes communicating and socialising hard for lots of reasons, mainly pain levels and sensory difficulties. I've struggled to come to terms with my limitations, and the limitations put on me by others. I've found it hard to make sense of my altered role, identity, the way people perceive me, the way I see myself. But not everything has changed. There are still some things I can enjoy, just differently. And not being so ANGRY means I can now be more myself with my friends and family again.

It means I can pick up the phone and say "Happy Birthday!"

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%3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/so_what_are_we_going_to_call_t.html">So what are we going to call them?

  • Posted by The Goldfish
  • 3 Jul 07, 03:42 PM

I was thinking about this before I saw Nicola's run-down of %3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/bad_language.shtml">Bad Language, but it fits in nicely. Esteemed blogger Wheelchair Dancer has found herself accused of being %3Ca%20href="http://cripwheels.blogspot.com/2007/06/bitter-twisted.html">bitter and twisted for using the acronym TAB (Temporarily Able Bodied) to refer to those of her fellow dancers who are not disabled. Now that Nicola has addressed the different ways in which disabled people are described, what about them others? Are you not disabled? What's that like? And how would you prefer to be referred to?


AB or Able-bodied people
I must say I strongly object to able-bodied simply because it is inaccurate. People who have non-physical impairments of all variety are too frequently excluded from discussions about disability and such a phrase compounds this. Many people also assume they can assess abled-bodiedness by appearance alone; harking on about people on disability benefits or using disabled parking etc., being perfectly able-bodied when really they mean, "This person isn't in a wheelchair and my imagination cannot stretch beyond that fact."

It wouldn't be so problematic if this word was only used to refer to people without physical impairments, but whilst it is used to still create a false dichotomy between disability and the ability to walk unaided, I prefer to avoid it completely.

Temporarily Abled Bodied (TAB), Temporarily Non-Disabled, Disabled-In-Waiting, Not Yet Disabled etc.
Penny at the Disabled Studies, Temple U. blog wrote a %3Ca%20href="http://disstud.blogspot.com/2007/05/in-search-ofthe-first-tab.html">brief history of TAB, which is well worth a read. Obviously I don't like it because I don't like the able-bodied bit, but the suggestion that %3Ca%20href="http://cripwheels.blogspot.com">Wheelchair Dancer received when she used this term was that the temporary status was a curse; the time will come when you're just like me. As far as I am concerned, one can only see this as a curse if one accepts that impairment is inevitably a cause for suffering.

Of course, acquiring an impairment is not inevitable for anyone, but many people believe it couldn't happen to them. Very few people progress far into old age without having some degree of restricted mobility and some deterioration in sight, hearing, short-term memory and sometimes cognition. Once again, one can see this as a tragedy or just another phase of life - a phase which one might even feel privileged to have made it to.

I know that %3Ca%20href="http://labracknell.blogspot.com">Lady Bracknell prefers the term not yet disabled, which somehow makes disability sound less inevitable. I'm not yet rich; nothing is guaranteed. Perhaps this is preferable?

People without disabilities, People without a disability (Pw/oD)

This only makes sense if you think that disability is a problem a person has, the same as a medical label or functional impairment, as opposed to something that a person experiences within society. Personally, the only thing I have in common with other disabled people is experience; things which happen to us as opposed to any similarities in our medical records. So people without disabilities doesn't mean a lot to me.

Normals, Normies, Norms etc..
I like the use of these words when informally addressing prejudice. The whole nature of prejudice is that one person perceives themselves to be normal and whichever group they're mistreating to be abnormal. In order to have prejudice, they must consider their normality to be a good thing, so why not let them have the label they consider so precious?

But for our allies, it does make them sound rather boring. And once again, it's inaccurate; I know lots of people who aren't disabled who are really quite extraordinary. Arguably they have to try a little harder at it...

A not dissimilar word used in a formal context is neurotypical or NT used to refer to people who are not on the autistic spectrum in clinical, social and political discussions about autism, autistic people and the particular social barriers they face. This has lead to the parody website of %3Ca%20href="http://isnt.autistics.org/">the Institute for the Study of the Neurologically Typical or ISNT, which challenges the stereotype of people with autism not having a sense of humour (or indeed, a mean streak), and even provides %3Ca%20href="http://isnt.autistics.org/ntscreening.html">an On-line NT Screening Test, to see if you too might suffer from this tragic affliction (the website claims that it effects as many as 9625 people in every 10,000!).

Walkie Talkies or Walkie Talkie Types
This is kind of cool and can cover a massive range of impairments that effect mobility or communication in some way, even those that don't impair one in the specific tasks of walking and talking. Unfortunately, whilst I have heard it used very inclusively, it is subject to interpretation in a similar way to able-bodied. I did a quick Google to try to gage how commonplace this phrase was and found this essay; %3Ca%20href="http://mysite.verizon.net/vze20h45/essay/guest/cominghome.html">Coming Home to Disabled Country by Sarah Triana and Laura Obara. It demonstrates how a phrase like Walkie Talkie can be used by disabled people to exercise prejudice against other disabled people. Which is sad, because I kind of like the phrase.

Non-disabled people
Is a simple opposite to disabled people. Strictly speaking, it's a double negative, but merely abled is a bit meaningless. The same construction used in other contexts has sparked controversy; it was felt to be inappropriate to refer to people as being non-white when talking about ethnicity because this implied that white was the default or even superior, when only a small minority of the world's population are white. Disabled people are also a minority, but this phrase is only ever used in the limited context of talking about disability; in most conversations about society, non-disabled is assumed to be the default status and therefore not even mentioned.

It's a rather boring one, but it is my own personal preference. So what do you reckon?

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%3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/the_stelios_disabled_entrepren.html">The Stelios Disabled Entrepreneur Award 2007

  • Posted by Lady Bracknell's Editor
  • 3 Jul 07, 02:41 PM

Leonard Cheshire and Sir Stelios Haji-Ionnaou have %3Ca%20href="http://www.leonard-cheshire.org/stelios">joined forces to find this year’s top disabled entrepreneur .

You’ve got to self-identify as a disabled person to be eligible, and your business must be registered in the UK. For a full list of eligibility criteria, visit %3Ca%20href="http://www.leonard-cheshire.org/?lid=5085">this link .

If you win, Stelios will personally hand you a cheque for £50 grand. He will also, apparently, be keen to offer you some supportive words “that may also help your decide future business direction”. (Hey, that’s what it says. Don’t blame me for the fact that it doesn’t make sense.)

Stelios is quoted as saying, "I am very passionate about encouraging an enterprising spirit throughout British culture. Helping remove the barriers disabled people face to being in business is an important part of this. That is why I am keen to establish this new award which will give disabled people an opportunity to show the world what they are able to do rather than have them negatively judged by their disability. I look forward to seeing the best of the entries and in due course handing over the cheque to the winner."

So, are you champing at the bit? Already mentally disposing of that well-deserved £50k? Ok, then let’s take a quick shufti at the application form (you can download it from a link on %3Ca%20href="http://www.leonard-cheshire.org/?lid=5086">this page .)

Got it open in front of you? Right. Now, I’m not hugely well-informed on the accessibility of electronic documents to people with visual impairments. I’ve always had a tame expert to advise me on that side of things. (A tame expert who, in fact, was recently interviewed for %3Ca%20href="http://www.bbc.co.uk/blogs/access20/2007/06/access_20_interview_paul_mckee_1.shtml%29.">Ouch’s Access 2.0 blog .) Nevertheless, something tells me this form isn’t exactly the tops for accessibility. I mean, if nothing else, it won’t calculate your word count for you. So it looks as though you’re going to have to copy every word you've written in answer to all the questions and paste them into a separate Word document to get it to to tot them up for you. I don’t have any particular IT access needs, and I’d find that … off-putting, to say the least.

And while we’re on the issue of word count, a 2000 word allowance? Most of my blog entries for Ouch come up at about 400 words. Is five times that amount really sufficient to answer all those questions and sell your business?

Question 2 is a bit of a corker: “Please describe your disability”. Leaving aside the distinction between disability and impairment (because that way madness lies), “describe” it? Wonder how far you’d get if you answered this question with, “a blimmin’ nuisance”? Or, “it’s what made me the person I am today”?

Of course, we all know that what they’re really asking is “what’s up with you, then?”. But why? Because it’s not actually relevant, is it? My cynical, embittered imagination leads me to suspect either that they don’t want someone hideously unattractive to win and scare off all the press photographers, or they want the winner to have something really unusual and fascinating. Something that’ll make good copy.

Anyway, whatever you do, don’t answer “dyslexia” to that question. Cos you guys are automatically out of the running. Don’t believe me? Take a look at rule 10: “All entries must be checked for spelling and grammar”.

But don’t let my snarky asides put you off. If I were an entrepreneur, and I could find a use for £50k, I’d be applying right now this minute, I can assure you. Even if I had dyslexia…

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%3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/the_disability_closet.html">The Disability Closet

  • Posted by Zephyr
  • 3 Jul 07, 07:49 AM

I'm thinking about what I posted the other day here at Ouch, about how I never had to deal with a lot of crap that other PWDs deal with because I looked fairly 'normal'. I didn't do any of the things that ablist society views as disgusting or lesser. I don't drool. I don't look drunk when I walk. I don't lisp or have speech impediments. I just look like a regular chick who has trouble walking. I suppose in the %3Ca%20href="http://www.bbc.co.uk/ouch/columnists/liz/050606_index.shtml">disability hierarchy I'm somewhere at the top, at least outwardly.

That's not to say that I haven't put up with ablism and ostracizing, but no one's ever tried to have me forcibly sterilized or euthanised.

When I was a little girl, I strove to maintain my appearance of normality as best I could. I tried to hide my limp, even when limping was less painful. I wouldn't use assistive devices in public if I didn't have to. I didn't want to ride on the little yellow bus to school, even though it would have been a lot easier for me. I feared the ridicule of classmates too much.

I wish there had been some disabled children in my town. I was the token gimp at my school, markedly different from the other students. I think it would have been better if I'd lived in a city like Vancouver, where there would have been a lot more people like myself. In outport Newfoundland, I was quite an anomaly, and no one ever let me forget it.

I've stopped being self-conscious about my disability now, but I'm far into my 20s. I used to hate walking into a room full of new people, because I knew everyone would see the disability first. Nowadays I assume they'll see my stunning good looks first. :D I've stopped hiding my disability, because I've stopped feeling ashamed of it. I used to be thrilled when people said "You're disabled? I never would have guessed!" Now, I don't care. Well, actually, I prefer that they see the disability, because it's a huge part of me, a part of me that people need to be able to handle if they want to be my friend. I'm not hiding it anymore.

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%3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/congratulations_anne.html">Congratulations, Anne!

  • Posted by Crippled Monkey
  • 2 Jul 07, 01:22 PM

Just in case you've given up trying to follow the details of all the new appointments within Gordon Brown's government, on behalf of Ouch, Crippled Monkey would like to extend his congratulations to %3Ca%20href="/ouch/news/btn/geoff_mcguireiv.shtml">Anne McGuire MP, who remains in her post as Minister for Disabled People.

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%3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/chicken.html">Chicken

  • Posted by Dave Hingsburger
  • 2 Jul 07, 11:31 AM

Please pay attention, there WILL be a quiz at the end of this story.

When I came out of the hospital after having fought off a dangerous infection and landed in a wheelchair, I was due to make an annual lecture tour of the UK. I had four solid weeks of lecturing booked and had been excited about making the trip. This would be the first time I'd ever attempted a for week lecture tour. I'd done three week tours of the US and Canada several times, but four weeks - that was new. I had been worried about maintaining the energy throughout the four weeks before I got sick. Now, it seemed overwhelming. So, I called the host agency that put everything together, told them I wanted to come, but also told them that I might have to shorten some days and give my self extra breaks. They were really good about it.

The doctors had told me that I would feel my energy return fairly quickly. They had figured out why I kept getting these infections and had put together a packet of medications that I would continue taking for the rest of my life. That along with the medication for the infection made med time like meal time. But as I travelled, rather than get more and more tired, I felt more and more energy. It was working. I was amazed.

At the end of the third week we were staying the weekend in Carlyle, just south of the Scottish border, and it was a big weekend for me. I knew I was going to make the four weeks. I was feeling stronger than I had in a long time. I had finished the meds for the infection - which meant I could drink again. I hadn't had a beer in a very, very long time. So we checked into a hotel that wasn't much by appointments but was incredible with location. It was right across the street from a great looking pub.

The bags were dropped in the room, we hit the street heading for the bar. Wonder of wonders, it was accessible. There was soccer playing on every television screen and the bar was packed with young folk between 20 and 40 all in the mood to party on a Friday night. We were in the mood too. I knocked beer back with a rhythm you could dance to. Quickly, I was feeling the alcohol. Quickly I figured how great it was to get drunk in a wheelchair, you don't fall, you don't stagger. Too, I got to use the loo that was on the main floor and everyone else had to climb stairs, "Take that!"

A few hours later, I looked at Joe and said that I thought I'd best be getting back to the room. Joe pulled his face of the table and agreed. We headed back to the bar. I had forgotten the cobblestone streets and realized quickly that I should have visited the 'little boys room' before leaving. But the hotel was across the street, no big deal. We got in and headed towards the elevator. I was wheeling myself and Joe was walking with a decided list. As I got to the tiny elevator I saw an elderly woman watching me. She had that 'oh, dear, look at the delightful disabled lad' look that I had yet to recognize in people's faces.

I wheeled past her and got into the elevator. Even though I was driving drunk, I did a good job of getting the chair into a space that was quite small. She leaned in and said, "Everything alright chicken?"

Chicken. CHICKEN. She called me "Chicken."

I was dumbstruck and just sat there staring at her as the elevator door closed. Joe took the stairs, there was no way he'd fit in the elevator with me. It wasn't the fastest lift I'd ever been in and Joe was leaning against the wall on the second floor waiting for me. I pulled off the elevator and he said, "What a nice old woman."

"Nice? Nice?" I spat at him, "She called me chicken."

There I was a man. A man. An adult boy. A grown up. I was out on the town on a friday night. I was doing adult things, getting drunk in a pub, smoking cigarettes. I was back. I was off the medications and on with my adult life and she called me "Chicken."

In a single word it seemed as if she had taken my adulthood from me. As if she had taken my manhood away from me. As if she was addressing a little child, not a giant, grown up, drunken, man.

It was the first time I really felt the emasculation of the wheelchair. The first time I realized that I was perceived differently. Really differently. Up until then I was just grateful to be alive, grateful to be moving around. And now, I was being made childish, childlike, by the word - chicken.

So, a few weeks later I told this story in a lecture. Using it as an example of how disability changes perception. I told the story to illustrate the point that it's hard to negotiate adult rights for a people seen to be less, different, dependant, childlike. This is true for all with disabilities but especially those with intellectual disabilities. The reaction to the story came in the lecture feedback forms.

People were outraged at my interpretation of the events of that night in Carlyle. They said that she was just being nice. That the term 'chicken' was obviously a term of affection. That I was being hositle. Whoa! Really? So, I've been a bit shy of the story ever since.

Here's the quiz ...

Now, a guest blogger at here at Ouch, I thought I'd ask the disability community and other readers. What say you? Was she being patronizing? Was she diminishing me in some way? Or, am I being overly sensitive? Overly critical? I'd really like to know your opinion. Let me know what you think.

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%3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/its_for_charideee.html">It's for Charideee!

  • Posted by
  • 2 Jul 07, 09:35 AM

A couple of big-hearted individuals took it upon themselves to join the queue at Apple's stateside stores...and %3Ca%20href="http://news.cnet.co.uk/mobiles/0,39029678,49291348,00.htm">auctioned their shiny new iPhones on the internet for charity.

Now everyone is doing it. There's even a %3Ca%20href="http://cgi.ebay.com/Apple-Iphone-8GB-1-Million-Dollars-GuinesssWorldRecord_W0QQitemZ330142190155QQihZ014QQcategoryZ64355QQssPageNameZWDVWQQrdZ1QQcmdZViewItem">£1 million iPhone up there going for the world record and raising funds for Hurricane Katrina rebuilding at the same time.
A direct appeal goes out to Paris Hilton et al: "Just think of all the publicity you will get from setting the world record for most expensive cellphone purchase on Ebay!!!"

I find rampant consumerism repulsive in any form. I also hate charity stunts. David Clayman and Johnny Vulkan were the original two who wore T-shirts to promote their causes as the media descended on the snaking queues only to find a new 'worthy' angle. Clayman was representing %3Ca%20href="http://www.taprootfoundation.org/about/mission.php">The Taproot Foundation, which encourages big corporations to donate their expertise to nonprofit organisations.
Vulkan was queuing for %3Ca%20href="http://keepachildalive.org/iPhone/">Keep A Child Alive, which works to raise funds for children with AIDS in Africa.

But the tale has a twist. Perhaps realising the publicity potential of this stunt, %3Ca%20href="http://cgi.ebay.com/ws/eBayISAPI.dll?ViewItem&item=170127351494">Alicia Keys is presenting the first iPhone for Keep a Child Alive and it is currently going through the roof for thousands of dollars on ebay. Spike Lee actually bought it, which is mentioned further down.

Queuing for a whole day for a phone? Nah. Don't get it. Queuing, then sticking it up for auction to raise money for good causes? Hmmm. Still not sure, actually.

It's certainly raised awareness, and cash, for both organisations. But something just doesn't sit right with me. By putting the phones on ebay, aren't we encouraging more rampant consumerism rather than turning it on its head?

But surely it's okay, it's for charideee!

I've never liked charity auctions. Spending obscene amounts of money on, oh I don't know, a signed football or a dinner with a celeb says more about the person who enters into such a transaction than the cause behind it.

It says "Look at me! I'm rich, and I'm a philanthropist too!" But that just isn't true. Real philanthropy is performed without the expectation of personal gain. Okay, so the guys queuing may have known this, including Alicia/Spike, but do the people bidding for the iPhone? What do they really care about? The charity, being seen to care about the charity or the phone?

This stunt hops on the back of consumerism to raise the profile of two organisations working with people for whom the iPhone is an irrelevance as far as their lives are concerned. One nonprofit organisation supported by the Taproot Foundation is %3Ca%20href="http://www.taprootfoundation.org/npo/catalog/cs_boss.php">BOSS, which works "to help poor, homeless, and disabled people achieve health and self-sufficiency, and to fight against the root causes of poverty and homelessness."

Like Shelter over here if you need their help, you need the fundraising. But there's fundraising with dignity and then there's gimmicks. And sometimes to my thinking it all gets a little out of hand.

One final point. As %3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200701/apple_blind_to_iphone_accessib.shtml">previously noted here at Ouch! iPhones have a fundamental design flaw. Their touch screen renders them useless to blind and visually impaired users.

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%3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/introducing_the_amazing_topcha.html"> Amazing Stairclimbing Chairs!

  • Posted by Zephyr
  • 2 Jul 07, 04:30 AM

Disabled folk have been fighting for years to make the world more accessible, and arguably progress has been too slow. One recent invention addresses the accessibility issue by designing a wheelchair that can climb stairs.

Can you believe it? I have got to get one of these. I live in a building that has two flights of stairs, and it makes my life very difficult. Unfortunately, I love my place and don't want to give it up. Other than being non-accessible, it's a great place where my landlord and neighbors let me live my life without interference. From past experience, I know it's hard to find an accessible building that would be OK with me being nocturnal, noisy, and having lots of friends over.

I wonder if such chairs are available in Canada yet, and if so, would it be covered under medical insurance? This is one of the most marvelous disability tools I've seen in a long time. Let's face it, society keeps forgetting to make their public places accessible. With a chair like this, at least gaining entrance to a building would be taken care. No ramp out front, but stairs and curbs? No problem! No elevator in the building? Doesn't matter.

It doesn't address all accessibility concerns, but it makes getting into places a lot easier. Can you imagine how much more of the world would be accessible to a wheelchair user if they got a stair-climbing wheelchair?

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%3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/we_all_live_in_a_disney_submar.html">We all live in a Disney submarine

  • Posted by Lady Bracknell's Editor
  • 1 Jul 07, 06:05 PM

Some time ago, Aussie comedian Adam Hills wrote %3Ca%20href="http://www.bbc.co.uk/ouch/columnists/adam/290704_index.shtml">a piece for Ouch exposing the alleged disablist philosophy of the, er, "Hillsy Corporation".

Now, obviously, I’ve got no idea which corporation Adam was talking about. None. At all. That devilishly cunning code was far too impenetrable for me.

Nevertheless, I was – for some reason - reminded of that article of his when I came across %3Ca%20href="http://www.boston.com/business/articles/2007/06/10/disneylands_sub_accommodates_disabled/">this news story a couple of weeks ago.

Disneyland’s Submarine Voyage (which first opened in 1959) has recently reopened as the “Finding Nemo Submarine Voyage”. Disney’s “imagineers” (pardon me for a moment while I flinch at that insult to the English language) couldn’t make the subs themselves wheelchair-accessible. Instead, they’ve filmed the “undersea voyage” and will be playing it on a plasma screen in “a theatre designed to represent an observation outpost”.

Which is great. They’ve thought about accessibility for all the ride’s visitors. Can’t knock that. Not in itself. But do they have to make such a song and dance about the fact that they’ve gone to the effort and expense of making something accessible when their legal obligations under the ADA in regard to that particular something were “a grey area”? Are we supposed to kiss their feet in gratitude?

The whole tone of that article implies (to me, at least) that Disney feel they should be patted on the back for what they’ve done. That they’ve done something really special. Something they could have got away without doing, were it not for their saintly understanding of the tragic truth that some of their frailer(paying) visitors can’t actually shin down spiral staircases.

Whereas, frankly, if I had to pay for admission to the park, I’d expect either the whole place to be accessible to me, or my admission fee to be discounted accordingly. I may be a crip, but my money’s as good as anyone else’s. Call me unreasonable but, if I’m paying full whack for entertainment, I don’t feel there’s any need for me to be grateful that I can actually access that entertainment. Surprised, possibly. But not grateful.

• Visit %3Ca%20href="http://labracknell.blogspot.com/">The Perorations of Lady Bracknell


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%3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/bad_language.html">Bad Language

  • Posted by Nicola
  • 1 Jul 07, 05:08 PM

This is lifted from Turtle's Page of Joy, August 2005, expanded and minus expletives to use on Ouch. If you're wondering why I'm rehashing a two year old blog, it's because I wanted to address the subject and what I said back then, I feel, was my own perspective in a nutshell. The reasons behind the thinking here are a bit longer and I should go into them at a later date. It is a bit cheeky but what can I say, recycling is in.

I guess the only thing I would say now is, we deserve more than euphemisms and sugarcoating. There's no use putting the 'person first' if you know full well the only change you've incited is grammatical... we are disabled people. That is as much about physical environment, prejudice and ingrained attitudes as it is about the state of our bodies or minds. That is my belief. On Sunday the 1st of July 2007 at seven minutes past five in the evening.

Here goes:

'Person With A Disability'

You go round chained to something that inhibits your everyday life, preferably with furry handcuffs. You point and shout at this thing intermittently but it doesn't go away. This thing could be Chris Moyles. If your muscles can't handle that burden, I'm right ahead of you Sistah. Try a large, steep flight of stairs, sticky with WKD and splattered with chav vomit.

'Differently Abled'

You can shoot milk through your nose. Or something. All those of you who walk a bit weird, like, aren't differently abled, you're rubbishly abled until someone SORTS THE PAVEMENTS.

'You're a person first...'

B-b-b-but no-one asked me if I wanted to be Klingon.

Special

Now you know I'm not going to argue with that. I only had my knees messed up so I got the front seat of the people carrier on the school run every day...

In Your Situation...*invariably trails off*

Would that be my situation right at this moment? Jaded and sloshing with the diet coke and three ice cream sandwiches I ate in one sitting because my PA broke my freezer?

See the Person
Yeah so long as you see the wheelchair giant shiny wheelchair under my backside too, those things are mighty painful if you trip over them. If you can't see it I assume you have differently abled eyes...

Handicapped

You are a horse.

This is the second time i've signed off a post with the word 'horse.' It went down rather well last time...

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%3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/the_smoking_ban.html">The Smoking Ban

  • Posted by The Goldfish
  • 1 Jul 07, 09:30 AM

Today a %3Ca%20href="http://news.bbc.co.uk/1/hi/uk/6258034.stm">ban on smoking in public places comes into law in England, bringing the region in line with the rest of the United Kingdom. But does this have any particular impact on disabled smokers?

Care homes and hospices are exempt from the ban, in so far as residents are allowed to smoke in their own homes and these places are effectively a person's home. This issue was %3Ca%20href="http://www.bbc.co.uk/dna/mbouch/F2322273?thread=4308010">raised in a thread over on the Ouch! Messageboard this week when GumChewingFreak asked whether it would still be okay to light up around her PA.

However, the exemption for psychiatric hospitals that Liz Main wrote about last year in %3Ca%20href="http://www.bbc.co.uk/ouch/columnists/liz/200206_index.shtml">Pygama Girl is Smoke Free only lasts until July 1st, 2008. There is a very high level of smoking among people with mental ill health, with up to 70% of psychiatric inpatients being smokers. For some people, regardless of the long-term effects, smoking is felt to provide temporary relief from certain symptoms, such as anxiety or chronic pain. In
%3Ca%20href="http://www.bbc.co.uk/ouch/features/smoke.shtml">Swallow The Spider To Catch the Fly, Sasha Vais actually takes up smoking in a desperate attempt to limit his intake of prescription medicines.

With some folks being detained in hospital, there is a real question of whether being forced to suddenly give up smoking is not likely to make an already distressing experience all the more distressing. It also seems rather unfair when prisons - places people are detained for committing a crime as opposed to simply being unwell - will continue to have designated smoking rooms.

Then again, hospitals are places very much concerned with all aspects of health. Other service users, as well as the people who work there, are no less entitled to protection from the dangers of passive smoking.

Meanwhile, a great number of disabled people are likely to benefit massively from the ban on smoking in public places. People with various respiratory conditions and immune disorders will be able to enjoy social activities that were previously barred to them, including Ouch! writer Jo Willacy, who has Cystic Fibrosis and wrote about her support for the ban in %3Ca%20href="http://www.bbc.co.uk/ouch/features/willacy_smoking.shtml">Smoke Gets In Your Lungs.

If the ban is successful in encouraging people to give up, this will also reduce the instances of various conditions which can cause impairment and add to our number. Damon wrote last year about the warnings on cigarette packets which emphasised the dangers of smoking to one's eyesight as opposed to one's life in %3Ca%20href="http://www.bbc.co.uk/ouch/columnists/damon/010606.shtml">Better Blind Than Dead

In any case, I'd like to wish the very best of luck to everyone who has chosen to give up smoking today. In case it is of any use or interest, the charity Rethink has a factsheet about %3Ca%20href="http://www.rethink.org/living_with_mental_illness/everyday_living/physical_health_and_wellbeing/staying_healthy/smoking.html">Smoking and Mental Illness, including information about quitting.

• Visit %3Ca%20href="http://blobolobolob.blogspot.com/">Diary of a Goldfish

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%3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/we_all_live_in_a_disney_submar.html">1 %3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/congratulations_anne.html">2 %3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/so_what_are_we_going_to_call_t.html">3 %3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/keeping_in_touch.html">4 %3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/invitation_to_party.html">5 %3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/post.html">6 %3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/what_disables_me.html">7
%3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/a_warm_welcome.html">8 %3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/feeling_young_feeling_fiesty.html">9 %3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/so_you_have_a_son.html">10 %3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/the_perilous_world_of_eggs.html">11 %3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/all_i_want_is_lovin_you_and_mu.html">12 %3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/heard_said_thought.html">13 %3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/the_mike_devenney_scholarship.html">14
%3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/shock_horror.html">15 %3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/straight_banana_anyone.html">16 17 %3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/disapedia.html">18 %3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/post_1.html">19 20 %3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/rudys_blog.html">21
%3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/disapedia_guides.html">22 %3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/sicko.html">23 %3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/not_working_not_whiling.html">24 %3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/the_floor.html">25 %3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/too_nice.html">26 %3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/when_cripples_go_crooked.html">27 %3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/a_vision_of_loveliness.html">28
%3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/password.html">29 30 %3Ca%20href="http://www.bbc.co.uk/blogs/ouch/200707/mentoring.html">31

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%3Ca%20href="http://arthriticyoungthing.blogspot.com/"> Arthritic Young Thing

%3Ca%20href="http://bipolarworks.wordpress.com/">Bipolar Works

%3Ca%20href="http://mybodyofwork.blogspot.com/">Body of Work

%3Ca%20href="http://davehingsburger.blogspot.com/">Chewing The Fat

%3Ca%20href="http://www.chronicholiday.blogspot.com/">Chronic Holiday

%3Ca%20href="http://blobolobolob.blogspot.com/">Diary of a Goldfish

%3Ca%20href="http://diaryofamonkey.blogspot.com/">Diary of a Monkey

%3Ca%20href="http://www.giraffealicious.blogspot.com/">Ponderings and Ruminations

%3Ca%20href="http://elizabethmcclung.blogspot.com/">Screw Bronze!

%3Ca%20href="http://www.the19thfloor.net/">The 19th Floor

%3Ca%20href="http://beautyoffensive.blogspot.com/">The Beauty Offensive

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%3Ca%20href="http://cripwheels.blogspot.com/">Wheelchair Dancer

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