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Ethical Considerations

  • Posted by Mark
  • 30 Sep 07, 11:59 PM

During my student years, I published a journal article on legalized physician-assisted suicide laws and their potential consequences for people with disabilities. My general thesis was that such laws (like the one that had been recently enacted in Oregon) would create a social climate where people with disabilities, either because of subtle family pressures or because of a lack of access to community supports, would be more likely to seek out assisted suicide. Since I first wrote that article, my views on the topic have become more laissez-faire. Research studies seem to suggest that assisted suicide laws are not being used to target people with disabilities or other vulnerable populations. Of course, one scientific study is not conclusive, but the evidence is difficult to discount.

Plenty of disability activists remain concerned about the dangers of legalized assisted suicide, but I now wonder if a balance can be struck that balances the interests of those who feel threatened by such laws against the interests of those who might have a justifiable desire to determine the time and manner of one's death. Bias against disability certainly exists and that dynamic creates plenty of scenarios that are fraught with moral ambiguity. For example, over ninety percent of prenatal diagnoses of Down's Syndrome result in elective abortion. I'm not sure that this means the disability community should be championing restrictions on abortion.

The controversy surrounding assisted suicide is, in some ways, a sideshow that has the potential to distract the disability community from more pressing issues. If people with disabilities had better access to housing, jobs, and support services, perhaps activists would be less inclined to worry about the possibility--already somewhat remote--that we might seek a way to end it all.

• Visit The 19th Floor

Home, Sweet Home

  • Posted by Wheelchair Dancer
  • 29 Sep 07, 09:31 PM

We've bought a fixer-upper. A skeleton of a house. Literally. We will keep the posts the house is standing on and, hopefully, the siding. It's a pole-house, leveraged off the side of a hill. Everything else must/will go. The disgusting original appliances and fixtures (which, if they were in good condition would be hipster collector's items), the carpets (OMG), the leaky roof, doors, and windows, the unsafe decks (the engineer freaked out -- just as well we have liability insurance), and, if the city prevails, the unpermitted second floor (please, no!). On the upside, all of this means, that we now have the opportunity to design and build a wheelchair accessible house -- from the ground up.

I have been in commercial accessible space, institutional accessible space, the homes of other wheelchair users which they have made accessible, loft space (basically accessible, but the bathrooms can be tricky) and one "built from the ground up accessible" house (it felt weirdly like an institution), but we're not experts in universal design by any means: we hired an architect to make sure that we didn't miss anything. Mr. A's first question was did we want a truly universally accessible house or "just" something I could roll around in comfortably? That seemed to be such a principled decision that he rephrased -- what do we have to do for me to be able to do the things I do?

One place we compromised was the kitchen. I need to be able to boil the kettle and reach the fridge and the microwave. I occasionally make salad, but I am not a chef on the same scale as Wizard. I would rather go miles out of my way than begin to assemble a meal from ingredients in the fridge and the cupboards (what *does* one do with flour, anyway?). The bathroom was one place we did not compromise. I like bathing. I like water. I can hide in the tub for hours. And at the end of a hard dance day, I need a bath. We ended up working from the standpoint of how can the architecture of the house invisibly support my body. This perspective has meant that stuff is designed in. The bench on the backside of the bed headboard? Transfer height. The shower? Built in seating all around the shower and all the shower head and body spray thingies are designed to work at either seated or standing height. The level changes between garage, downstairs bedroom, hall will be smoothed out, etc., etc. Doors will become "lightweight pocket doors." An automated sensor system will take care of light and temperature regulation (operable from computer or, possibly, cellphone -- Wizard is a techno-geek).

I'm not sure what's next. The drawings seem to be mostly done. We're submitting permits next week to the city. And from then on? Well, who knows. I've never built a house before. Everyone tells us horror stories about construction, but we're not sure of the complications accessibility modifications might bring. Technically, disability specs should be no different from any other type of construction spec -- after all, people often ask for the weirdest things in their homes. That said, I suspect there aren't many companies that have experience with disability modifications. And that means there will be one or two accessibility hiccups on the way.

Visit the online home of Wheelchair Dancer.

Jokes, Jesus and being afraid.

  • Posted by Elizabeth McClung
  • 28 Sep 07, 06:00 AM

This week, I was lying in an operating theatre. My arms were tied down with an anesthetic mask strapped to my face when I started doing ASL finger-spelling sign language.

“Look, she’s signing.” one of the nurses said.

“It’s so pretty.” another commented before asking, “Does anyone know sign?” No one did.

“Still, it’s a very beautiful language.” They all agreed.

What I was signing was: “I’M AWAKE!!!!! PLEASE DON’T START!” (I am terrified of being operating on while awake.)

That incident is exactly the difference I am getting between my viewpoint (I am tied down, terrified, unable to speak due to the mask and I can’t see where the scalpels are) and others’ viewpoint (Isn’t that pretty).

Over the last few weeks many, many people have told me that “I have a great attitude.” I have been told by people with long term disabilities and those who work with people with disabilities that “I’m dealing so well” or “You’re so positive, it’s inspiring.” The Red Cross workers told me, “I’ve never met someone coping so well, you’re amazing!” Now, these people may think that but I (and I hope you) know better; I’m tired, scared, self absorbed and cranky. But I make a lot of jokes. I make people laugh instead of feeling sorry for me. I do it because a) I am a sick twisted person and b) because I am afraid.

A few days ago one of my home care assistants became convinced I was going to die in the near future. She turned to me with concern on her face, “The most important thing now,” she said leaning in and putting her hand on my shoulder, “is to let Jesus into your heart.”

Personally I find nothing more terrifying than a young evangelical standing over you in your own home refusing to take a hint and leave. She told me, “The relationship with Jesus is both eternal and unchanging.”

“Really?” I said, “Because Jesus and I have been dating and I sort of wanted to take it to the next level but if you say he’s ‘unchanging’....”

Nothing slowed her down. Not only did she pull out her own bible but started searching through my books to see if I had one. So why did I make jokes instead of telling her to leave? Why did I not call up her supervisor when she stayed on an extra hour to convince me of the immediate need of accepting the burning love of Jesus Christ (“When you put it that way, actually I'm already in a lot of pain…”)? I did it because I was afraid. Afraid that home care would send her back (they did, the next day) and she would be angry and deny me care; afraid that I would anger the home care agency and they would not send people when they promised. Just afraid.

I am not used to being physically dependant. Being in a situation where if someone is upset at me, I can’t change clothes or eat is unnerving. Someone asked me this week, “You seem pretty extreme (toward your body), if you weren’t disabled, do you think you would be more active or less?”

I gave them the ‘look’ and said, “I used to train for marathons on the basis that if I didn’t pass out at the finish line from internal bleeding, I wasn’t really trying.”

“Ah!” they took a step back.

I’ve never been a gifted athlete, but I’ve always been “in control” of my body (if by “in control” one means dishing out abuse levels of exercise on a regular basis). Before and now is summed up by this; I slept on the floor for 10 years, now I sleep in a hospital bed. And physically depending on people, on “agencies”, on medicine, on assistive devices is scaring me. Okay, I’ll admit it; “Does not play well with others” might have shown up a few times on school report cards. “Does not respect authority figures” showed up too (along with a few parent-teacher meetings).

At 7:00 am Monday morning, I’m asking the nurses and the surgical team, “Did anyone here party a lot last night? Any hangovers?” Seriously. The surgeon came to reassure me and the first thing I said? “Are you a morning person? Would you consider this early? Do you find it hard to focus in the morning?” Everyone laughed. They thought I was making jokes.

Okay; being dependant scares me, which means I don’t stand up for my rights as a client and a human being. Instead I make jokes. Isn’t the first step admitting you have a problem? So what’s the second step?

Wheelie Catholic in her Sept 25th post on dealing with service calls explains the Tao of Betty: Just say no. The idea is that it isn’t my responsibility to a) make sure everyone feels comfortable; b) satisfy everyone’s curiosity about my condition and c) explain my every limitation when asking a caregiver/agency for assistance. It isn’t? Reasserting my right to say “no” sounds hard, sounds difficult, sounds potentially embarrassing. If that’s true then isn’t that particular mix the kind of thing I used to be interested in (naked rock climbing? Count me in!)?

Being dependant (and the fear) is something I deal with every day. What I don’t know is how to balance being self assertive in that framework. I don’t want to be the cranky miserable bi..er..witch who everyone hates because she is always on the phone complaining if every single thing doesn’t always go her way. But I am getting a bit tired of being nice and jokey to people who don’t respect me as an equal human being. I need help.

So what have you done to create that balance? How do you deal with being dependant? Because I’m looking for tips, experiences, and helpful advice; if you want to recommend The Secret please go to the back of the queue.

• Visit Screw Bronze!

Take My Disability. Please.

  • Posted by lilwatchergirl
  • 27 Sep 07, 10:45 AM

"Just because they're disabled, everyone else has to suffer."

I'm actually hearing these words on this morning's BBC Breakfast News. It's 8.45am, and I'm at home today. This is because I can only do about six hours at work before needing at least thirty-six hours in bed to recover. Abject poverty follows, not to mention boredom and a serious lack of career development opportunities, but I am at least fortunate enough to have an employer who's willing to let me do hours that work for me. Hence being free to sit in front of breakfast television all morning. But back to the subject at hand. (A wandering mind and frequent digressions are part of my impairments. Seriously. I wonder if there's any cheese in the fridge. Would my flatmate notice if I ate the chocolates she left on the table?)

Today's news features ASDA stores in Merseyside which are imposing fines on people who park in spaces designated for disabled customers (as well as those for parents with young children). The above comment came from someone rather smug-looking being interviewed about what the newsreaders called "controversial measures" of this sort.

Several things strike me about this story. Firstly, I can't believe that these fines aren't being imposed already. Disability Now has been researching and covering the issue of misused parking spaces since 2002, but it's taken 'til now for a supermarket to do enough about the problem to interest the mainstream media. Secondly, I'm very surprised to hear that this is, according to the supermarket, only a trial: they actually want to see how other shoppers react before deciding whether or not they're going to meet their responsibilities under the DDA - which is in fact the law, in case you hadn't noticed, Mr/Ms Regional Manager of Major Supermarket Chain. And finally, I'm quite appalled that people can say things like that on television without their attitudes being challenged. But the last one is probably just me being oversensitive. Right?

There are a lot of people who say slightly idiotic things to disabled people, along the lines of "I'm so jealous of your blue badge/Freedom Pass for London transport/electric wheelchair that means you don't have to walk anywhere/discount at the cinema/time off work so that you can recover from severe mental illness/Disability Living Allowance/part-time hours [complete with horrifically low pay. Did I mention that?]" I'd put the above reference - to how non-disabled people have to 'suffer' because disabled people need accessible car parking spaces - into exactly the same 'stupid and unthinking' category of comments about access. Most people's remarks may be less overtly disablist, but they're equally offensive. In response to such ideas, The Girl would like me to put a sticker on our car saying something like Want my blue badge? Just take my disability too. Never content with half measures, I'd quite like to extend it to When you take my [insert expletive here] parking space, you only serve to add to the considerable inequalities and barriers that make my (already stressful, painful and generally quite tricky) life more difficult, and you contribute to the overall package of social, medical and ideological rubbish that makes me disabled. So if you assume all you're doing is parking your car, please think again. And if, having thought about it, you'd still like to partake in all of that, you can have my [insert expletive here] parking space and I'll take your pain-free body, properly working brain and fully mobile legs, then I'll take public transport and go for a run round the supermarket.

Admittedly, that's not quite so catchy. It might entertain people sitting behind us in traffic jams, though.

• For more complaints about parking and other badly-enforced accessible facilities, visit Through Myself and Back Again

Standing Room Only

  • Posted by Bipolar Works
  • 26 Sep 07, 06:29 PM

I went to a concert last night at a cosy little venue not far from where I live. I like this venue because (in theory) even when it is full, there is still enough space to stand without getting extremely irritated by the large bloke jiggling around in front of me and waving his hands in the air obscuring my line of vision (why can they never dance properly?).

One of my companions was so annoyed she said “It makes you want to cut their heads off with a machete doesn’t it?” I didn’t comment. I reckon there should be a rule that all tall people should stand at the back and all small people should stand at the front. This would make for a much fairer concert experience.

I’m not really a fan of a standing only concert. I feel quite threatened if anybody touches me, steps on my toes or starts backing into me (even if it is completely innocent and accidental). I like to keep an invisible circle of space around me but this is obviously difficult to sustain, given that it is invisible and I am only 5 foot 3 inches. Unfortunately, this means that I find it difficult to relax and enjoy the show.

Another thing that I have difficulty with is the noise level. It can vary from band to band, but in general they like to keep it as loud as humanely possible, which is sometimes just a few decibels above my comfort zone.

But what really annoys me is the wolf whistling at the end of the show right down my earhole. I just don’t think these people understand the effect they are having on others nearby. I am sensitive to high pitched noise (I believe that this is a bipolar trait) and it upsets me so much that I have to put my fingers in my ears and it makes me want to cut my ear off.

And the flashing lights thrust upon the audience. Again, like a Gremlin, I'm acutely sensitive to bright light. Fortunately, I don't have epilepsy. Otherwise I'd be automatically excluded from all concerts.

You may ask why I bother to go at all, if I find it all such a negative experience?

The reason is this. There is nothing like the experience of seeing and hearing a live band perform right up close. They say and do things that you just don’t get on a recording. The venue that I went to last night was so small that at one point the artist concerned capitalised on this and left the stage to mingle amongst the crowd. You wouldn’t get that at a large venue.

But because I have bipolar disorder, I still have to think carefully before I decide on an evening out. A number of my favourite bands are playing at another venue in the city where I live in the near future. Only I haven’t bought any tickets, because the venue is just too large for me to feel comfortable on a standing room only basis.

Shame.

If you have a mental health condition, how do you cope at gigs and concerts?
Do you enjoy them or avoid them?

• Visit Bipolar Works
Advice and support for combating discrimination in the workplace for people with bipolar disorder and other mental health conditions.


Work It, Work It, Uh huh...

  • Posted by Wheelchair Dancer
  • 24 Sep 07, 08:30 AM

It's that time of year again. Fashion weeks in New York, London, and the obligatory discussion of skinny models. It's a worthy discussion -- don't get me wrong. Model deaths are shocking, horrible, and all too frequent. But what I want to know is where are the clothes that look good for wheelchair users. Where are the disabled models? Where are the wheels? The canes? The prosthetics? The different bodies? OK. Not gonna happen, right? If the fashion world cannot accept a diversity of non-disabled women's bodies, they are surely not going to be happy about the physical variations possible with disability. Grin.

The hip women at Discovery Through Design last year created a fashion show in which designers such as Marc Bouwer, Nicole Miller, St. John, and Kimora Lee Simmons (baby phat) created a chair for the "roll models." There was a gala, circa 600 people came, and there will be another one sometime -- presumably in 2008. Not enough, say I.

I emailed the DTD people to ask if the designers were planning to release lines of clothing that took wheelchair users into consideration. Not a chance. They were most interested in having the designers create wheelchairs (they used clothes that they had already designed for the models). If I wanted to contact the designers on my own and ask about designer clothing, that was my own affair (like they post their email addresses on the web, right!). So, a one-off sparkly sequined gold wheelchair (cool), but no designer clothes to buy in the boutiques. No use having a personal shopper -- though Emma Bowler for Ouch did well with one -- if the ideal clothes just aren't there this year. "Sorry, we don't keep those any more."

It's not that I am asking designers to release "special" clothing for those "special" people, though the notion of, say, "Versace for cripples" kind of intrigues me. Prada-cyborg-wheelchair-metallic-space-age? It's that if I wanted to spend on a special dress for, say, Wizard's annual company "do" -- an event at which dressed-to-the-nines would be an understatement -- it is virtually impossible to find something that looks devastating when sitting. I am really picky about my clothes. I like to look good, and I am willing to spend a fair amount of money to do so. I want something to display my best assets -- not something that relies on the eye-catching standing female form. (And, of course, I am not model skinny, so I want designers to design for bodies with, um, curves...). I'd also like to be able to buy couture clothing that works for wheelchair users, but, then again, I'd also like the budget to be able to afford that. So, for the meantime, I'd settle for knowing that Gucci offers stuff that is designed with the seated person in mind and that someone, somewhere, is wearing it.

On a more pressing level, I want to be able to buy edgier clothes on a daily basis (well, not daily!!). I don't need zip up cardigans that balloon if worn in a position other than standing. Elastic waist doesn't have to mean shapeless. Tailored doesn't have to mean tight. Tight doesn't have to mean non--breathable fabric. We can wear ordinary clothes, and for the most part, most of us do. We go to the high street or the mall, the shopping center and the boutiques, and we rootle around until we find something that works (3/4 length sleeves are divine, cropped jackets awesome, millions of tiny buttons a pain...). Occasionally, we make use of a piece of dedicated adaptive clothing, but, I am willing to bet, we do most of the adapting ourselves.

There are any number of beauty bloggers and fashion consultants who have come up with guides and stuff for looking good while in a wheelchair. Tiffiny Carlson's stuff comes to mind as being particularly precise about the demands your wheels place upon your clothes. But being a chair user isn't the only form of disability that places demands upon the wardrobe. And it is not as if mainstream figures like Trinny and Susannah really care, as Lady Bracknell notes in this post. Somehow, thick ankles, short calves take precedence over wheels. OHhhhh!

Ha! Writing this has made me think about it differently. Perhaps it is a good thing they don't care. After all, T+S et al see difference as deficit, a flaw to be corrected. Imagine. Knobby tires vs rubber vs racing. How would you dress to accommodate that? The low cut back vs the high back. High profile cushion with air cells vs foam cushion. Scissor brakes, anyone? So many fashion implications. Not. OK, well, disability politics. All well and good. But I still NEED something to wear.

Last week, I went to a meeting at the bank. Everyone was wearing "dress to impress" professional garb. I was also wearing work attire, but in my case, this meant dancer clothes. No, not tights and a leotard (definitely not cool to be seen outside the studio in anything remotely resembling *that*), but also quite clearly exercise wear. I realized that my dance clothes are some of the best fitting, disability friendly clothes I have. That's good, because I spend many hours a day in them. It's bad, because, well, the 80's are, thank god, over.

I have once had the experience of being dressed, perfectly. I went in and was greeted with the over enthusiastic, inspiring junk. I almost left again, but my eye caught this dress. "No, no. You can't wear that," she said. I turned a steely gaze on her. "You use a wheelchair. You need this. That. This. That. And this would look great on you. Fluff your hair up. Pull that lower when you put it on." She was right, too. Wish her attitude had been as good as her style; I've not been back since. And it turned out to be hard to replicate her suggested look when I went to other shops.

I'm not happy. The weather has changed; I'm under-dressed. I have changed shape and size. My non dance winter clothes have holes in them or wheelchair gunky, oily stains on them. The cats have wrecked my sweaters. My coat has split at the armpits (wheeling in chunky jumpers). I need clothes, dammit.

Visit the ultimate in hip: your Wheelchair Dancer.

Winning Hearts & Minds

  • Posted by Mark
  • 22 Sep 07, 10:51 PM

I was at a training session for emerging leaders yesterday and one of the guest speakers was a judge from our state supreme court. After he finished his prepared remarks, I approached him to compliment him on his speech. We chatted for a bit and he stated that it was admirable that, despite the "bad hand" I had been dealt, I had become an attorney and had found work.

I never quite know how to react to comments like this. I know that it was intended as a compliment, but it reminds me that my disability circumscribes so many initial perceptions of me. In both my professional and personal lives, it is the visible manifestation of my disability that shapes the initial interactions I have with most people. And I sometimes get the impression that my educational and career achievements serve as a counterweight to the largely negative assumptions that most people seem to have about disabilities as significant as mine. When I mention I'm an attorney or that I have a full-time job to someone I've just met, I notice subtle shifts in how I'm treated. The condescension ratchets back a couple degrees and communication is less likely to be directed at whomever is my companion at the time. It's as if revealing those facts about me somehow elevates my status. I'm no longer just a poor guy in a wheelchair. I'm a poor guy in a wheelchair with an attorney's license.

I've learned to use my credentials to my advantage. A casual mention of my profession can sometimes force people who might otherwise ignore me to give me some attention and respect. But it shouldn't be this way. Because every time I find myself doing that, I feel like the outsider more than ever.

I don't see anything particularly commendable or meritorious about the career path I took. I chose law for a lot of reasons, but not because I was seeking praise. If my accomplishments are seen as noteworthy or--gulp--inspirational, that's an indictment of a society that marginalizes and excludes so many talented people with disabilities who, if not for a host of systemic barriers and the soft prejudice of low expectations, could do brilliant things that would make me look like an average schmuck.

• Visit The 19th Floor

Wheelchair= Invisible

  • Posted by Zephyr
  • 22 Sep 07, 08:42 AM

My partners are astounded by the way the able-bodied world treats me. I'm so used to it that their stunned reactions are almost strange to me. I'm like, "Yeah, the able-bodied world treats PWDs like crap, is this news to you?" Apparently, it is.

I started using a wheelchair recently on bad days, or for trips that involve a lot of walking. It's quite a relief to get from Point A to Point B without having to put myself through incredible amounts of pain. Unfortunately, it's a manual wheelchair, so I need an assistant to carry the chairs down my stairs and push me to my destination. It's just too hard on my upper body otherwise. I spent all day in front of a computer, I don't want to wreck my arms and back.

Usually, my boyfriend ScratchDaddy is the one steering the chair, with me telling him where to go. We do this for work, and many social events. It's made my life a lot less painful. The first couple of days we were out, he was astounded at people's rudeness toward me now that I was in a chair. His primary beef is people taking up the sidewalk, and having to say "Excuse me" three or four times before they get the hell out of the way. You wouldn't believe how slow people move in Vancouver. It also pissed him off when people crowd on the bus ahead of me. It's more sensible for me to get in first and situated in the wheelchair seating BEFORE the bus fills up.

Scratch has gotten quite aggressive about the whole thing. I actually had to tell him to tone it down at one point. I think he'd favor me carrying a cattle prod and shocking people out of the way. It IS tempting.

Today I had a very important appointment, but Scratch had to go to work all day. No problem. I called this new guy I'm dating, Bard, to escort me. After a while, I noticed he was wearing the same pissed-off face that Scratch wears when people are rude or ignore me. Actually, people mostly ignore me or don't notice I'm even there. Not many people are outright rude to me. Anyway, Bard was completely amazed at how people were treating me today. He said, "Why are people talking to me and not you?" I just looked at him and said, "You are soo naive. It's the chair." His eyes went big and he exclaimed, "Are you serious?" He couldn't believe that a set of wheels could make people ignore me the way they don't when I'm on canes.

That's actually the first time I've noticed people treating me differently because of the chair. Actually, I didn't really notice it until he pointed it out. I'm sort of oblivious to rude treatment unless it's really blatant. I don't pick up on subtler stuff like that. Still, I knew to expect that sort of treatment from reading the blogs of wheelchair users.

When we were at Starbucks, I ordered us tea, and the barista tried to confirm the order with Bard. He just pointed at me and said, "Talk to her, she's the one ordering." Bravo! We also had an issue where we were in line and some guy thought we weren't and jumped ahead of us - even though it was obvious we were in line. It was like he saw the chair and thought I couldn't be in line or something! It was weird. Anyone ever have that happen?

I don't get it. What's so different about the chair that people are ignoring me? Is it because I'm not at eye level? Is it because people don't want to deal with disability? Is it that they're programmed not to look at people in chairs? Do they think I'm furniture, as Bard said that guy treated me? I do not understand the difference. I don't understand why it's so hard to look a wheelchair-user in the eye, confirm an order with them, talk to them, shake their hand (assuming they can shake hands, of course). It's simple as anything. What's the big deal?

Bard was really pissed off, but I find myself more wondering than angry. I suppose were I an everyday chair-user I'd learn to get pissed real soon. I'm mostly just mystified. It's hard to take it personally when I know it's just the wheels. It's the chair they have a problem with, not me. Still, it's completely unacceptable. I guess I should learn to start seeing it more so I can stand up for myself more. I like having my partners stick up for me, especially when I'm so tuned out - I tune out almost everything when I'm out and about. It's a necessary survival mechanism for me. Otherwise I see too much, and it overwhelms me. But that's a different topic. Anyway, it's nice that my partners stick up for me, but I'd really rather do it myself.

• Visit Arthritic Young Thing
*May contain adult content*

Adult with disability or oversized child: who decides?

  • Posted by Elizabeth McClung
  • 21 Sep 07, 07:08 AM

Remember back when you looked forward to being an “adult?” There was that feeling of finally getting to stay home alone without a babysitter. And looking forward to when no one could stop you going to any film you wanted…without a parent. Or more important, the day you could buy booze worry free; and the milestone of getting your drivers license. All steps toward the great independence known as being an adult.

I am remembering them because since I have tumbled into disability, different people have been trying to take those cherished badges of adulthood away.

First it was the driver’s license. Tell me, why did I (and my parents) suffer through driving lessons and parallel parking if they can take that away just because I occasionally spontaneously lose consciousness? As I explained; I don’t mind losing consciousness at all. It doesn’t terrify me. ‘They’ explained that the drivers in the oncoming lane felt quite differently.

Then there is my overprotective Recreational Therapist who I assumed was supposed to be helping me to get out into the world a bit more (a bit of adaptive sport, a bit of socialization?). Yet our meetings have the same tone my 7th grade teacher had about why my report of “The wonder of Aluminum” was late ANOTHER day. She wants to know what I have done, when I have done it, and what I intend to do to improve. If I ask her for ideas she says, “I prefer the ideas to come from the client.” Errr...If I have all the ideas, shouldn’t I be the one getting paid? It wasn’t a big problem until I showed up for a Neurological Condition Support Group which was based in the building next to hers. I was talking to the group director when she suddenly appeared and demanded, “What are you doing here?” I smiled and said to the director; “This is my Rec Therapist. She wants me to get out and meet some new people.”

“When you are ready for it.” my Rec. Therapist responded (with the distinct overtones of “When I think you are ready for it.”) before pulling aside the director ‘for a talk.’

Alas, here I thought the group director and I were two adults, able to communicate using both big and medium sized words. I had also thought that giving information gained from medical services to a third party was an invasion of privacy. But maybe that is only for those counted as ‘grown ups.’ I have noticed that some of the people employed by government to ‘help’ the newly disabled sometimes get confused between ‘assisting’ and ‘being in charge of.’ This isn’t the first time someone who was employed to 'assist' me has suddenly turned around and started using phrases like; “I’ll have to think about whether I should allow you to continue.” That phrase would make sense if I was taking a class in laser surgery; but it is insulting when it is about using the public transit system or renting a wheelchair handcycle.

The landlady of my building has recently gotten into the act. Two days ago, she entered my apartment, using the keys to get through the two locks on the door. I was resting on the floor on oxygen and a neighbor was with me. The landlady had seen me enter with difficulty, so she came up to the apartment, decided (without my consultation) my ‘state’ and called my partner’s workplace, telling them to get her home now to “take care of me.” I realized after that she used the same tone ‘adults’ use when they find a child, at home, sat in front of a tub of ice cream, who keeps saying, “No honest, I stay by myself all the time.” An ‘adult’ usually calls up ‘someone’ to come and take charge of this child. To add insult to injury, she later told Linda that she had seen the “state of the bedroom” and essentially I was ordered to ‘clean up my room.’

Now, it is true I have problems breathing (and times when I can’t speak). It is also true that my landlady not only hasn’t asked about my health condition but is slightly phobic of me in general (on the basis that disabled people occasionally explode and cover others with human goo I assume) Yet I pay money for my apartment and I am not just adult sized, I actually am an adult. I don’t need a keeper AND I can speak for myself. Of course, often in restaurants or coffee shops they assume otherwise as they turn to Linda and ignore me; even when I speak directly to them. Sigh. Can’t order my own meal in a restaurant: that makes me about....eight years old doesn’t it?

If this continues it won’t be long before people will assume that by being alone I must be lost and start looking for my name and address pinned to my sweater. I wonder, when I fly, I hope there won’t be a big sign around my neck declaring my ‘unaccompanied’ status; as they amuse me with a colouring set and an airplane wings pin. Not that the colouring set wasn’t pretty cool...when I was nine. It’s just, these days, I order red wine on a plane. I also like to make rude jokes which start off with three nuns entering a bar during a burlesque show.

Just because I need equal access or some assistance doesn’t mean I am a child; as the many, many people who come within range of my sarcasm can attest.

• Visit Screw Bronze!

Back to School

  • Posted by Wheelchair Dancer
  • 21 Sep 07, 04:01 AM

Tomorrow is a big day. West Coast is doing its first school assembly in our new configuration, with our new work.

Weird stuff happens in school assemblies. It just does. They are where we make all of our worst mistakes. And we have a hard time not cracking up. One of our pieces involves a sofa; this is a challenge at the best of times, but in school assemblies the thing just comes to life and begins a performance on its own. In one piece, a dancer sends a wheel flying across the full length of the stage to another dancer who is hanging out. This frequently goes wrong ... wheels fall unexpectedly ... but the last time we did this, the rolling dancer sent the wrong wheel, the waiting dancer improvved and sent it back. She danced off stage and came back with yet another wrong wheel .... that would have been fine except it was the wheel of a chair of a dancer who was about to make an entry. Everyone just died and the whole thing froze up for a panicked 10 seconds; it felt like forever. Sometimes things go wrong despite our best efforts. Carefully engineered moves that depend on the floor not being too slippy, sticky, or both go wildly wrong -- Oh yes! The dance company! We've just polished the floor for you.... My roller-skating, skateboarding colleagues sigh.


I am a little nervous about this particular assembly: the kids who go to school in this small town of about 10,000 people are hyper privileged -- median house/condo price two years ago was 1.8 million dollars. It's definitely an "affluent enclave" and thus very different from most school assemblies where we arrive and we either have to perform in the dining hall (with all the leftover food on the floor) or on the school stage (wanna bet the lift isn't working or, worse, that there isn't a lift at all.... Yes, we check when we take the booking, but you know how it can be). Tomorrow, even though this is an elementary school, we will have access to the larger of the two theatres....! School assemblies frequently leave huge splinters in our non-disabled dancers' feet and bruises for everyone, but I guess we will be safe tomorrow... At their best, school assemblies are filled with kids who are so psyched by what we are doing; at worst, we are facing senior school kids/high school kids who appreciate the chance not to be in class, but aren't exactly thrilled to be watching a bunch of disabled people dance. This particular school has arranged "personal time" with the dancers; we're doing classroom visits.

Plenty of opportunity for things to go wrong here. We try to be open and receptive, but sometimes even frankness can be a problem. I remember that, when asked where her leg had gone, one dancer once said, "It died and went to leg heaven." There was a stunned silence and that ended the event pretty quickly. Then, there was the time when, noticing that one of our dancers didn't look disabled, a kid asked, "Well, what's wrong with you..." I dread these moments and always stutter over what to say.

OK, I am off to tweak my chair, tape up the bits that need to be taped, put air in the bits that need air, tighten up my loose screws and ....

• Visit a tense, tense Wheelchair Dancer

Jacob's Ramp

  • Posted by Dave Hingsburger
  • 20 Sep 07, 05:16 PM

From a perfectly straight face came an incredibly bent sentiment.

I was chating with someone at a conference a few weeks ago and they launched into a discussion about Christianity and "Finding God" ... as a believer in a kindly God ... I responded in a kindly manner. I mentioned that it has been hard for me to find a church in my new community because none that are near are also accessible.

Cold eyes met mine.

I knew something big was coming.

"You know why that is, don't you?"

Now I assumed it was because the churches were built long before the concept of accessibility had entered public conciousness. But no, I was told, "It's because, if you truly believed, you wouldn't be in that wheelchair."

"Pardon me," I responded with my typical wit.

Then it was explained to me that disability was the ... exact quote ... "Physical embodiment of sin".

"Oh."

With emphasis on concern for my soul (and with noticable lack of concern for their own) I was informed that I needed to get on my knees (as if I could) and beg forgiveness, ask for healing, and be made whole in God's Kingdom. That God was waiting for me, wanting my call ... Give my heart afresh ... I just blinked and slowly pulled my wheelchair back and away from the conversation.

It's hard to be a Christian, even a moderate one, sometimes because Christians can be so annoying. And in this case, stupid. My religious leaning is towards an inclusive kind of ideal. A place where all is welcome.

I've read, here on the Ouch blog about the medical model of disability and the social model of disability, but there is also the moral model of disability. That disability is because we're bad, slovenly, lazy and unclean people. That our parents were bad, slovenly, lazy and unclean people. That we got what we deserved in the first case. That our parents got what they deserved in the second place. Disabilty exists to punish me or punish my ma. Either case, it's disturbing to think that the equation ...

DISABILITY = SIN

... still exists and still is given credence. At the same time I remember having a long chat with a guy named The Reverend Jeffery Wilder who is a Southern Bapist Minister with cerebral palsy. He was telling me that in the biblical story about the angels ascending and descending to and from heaven via Jacob's ladder. "Ladder," he said, "is a mistranslation. People have been arguing about this story for years, but if they looked at the souce they'd find that the word isn't 'ladder' it's 'ramp'. In fact they were traversing Jacob's ramp."

Jeff's point is that heaven is already accessible.

Get with it.

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Adventures Abroad

  • Posted by Mark
  • 19 Sep 07, 01:20 AM

A couple years ago, I went on a holiday to Paris and Berlin. I had expected the accessibility of both countries to range from average to good and, for the most part, I was correct. Paris was the worst of the two; major attractions were accessible but most stores and restaurants were off-limits. My traveling companions thought it was great that I could get into the Louvre and the Musée d'Orsay for free, but I find such gestures well-intentioned but ultimately meaningless. I'd much rather pay for my ticket and be able to use the Metro. Free admission seems like another way of saying, "Sorry our city is so inhospitable. Here's a free pass for your troubles." Don't get me wrong, I loved Paris and would go back in an instant. But I had the impression that it's a city where people with disabilities are largely hidden from view.

Berlin was much more accessible, which isn't surprising considering that most of the city was rebuilt from rubble after World War II. Even the U-bahn and S-bahn were usable (although the gaps between platform and train were a bit uneven most of the time). And the little hotel where I stayed was more accessible than anything I've encountered in the States, which was a pleasant and unexpected surprise. Berlin seems like a city where things get done-as opposed to the more languid vibe of Paris--and I have no doubt that it will be even more accessible the next time I visit.

Assuming I ever replenish my travel fund, I hope to see other parts of Europe. Of course, London is on my list. And I'd like to see something of Amsterdam besides the airport. Maybe somewhere in Spain or Italy. What would you suggest?

And if you're interested in seeing pictures from my trip, you can find them here.

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Transport Horrors in 'Disability Bitch Proved Right' Shocker

  • Posted by lilwatchergirl
  • 18 Sep 07, 02:23 PM

I, lilwatchergirl, of 'ever-determined to stay active and be productive' fame, am spending this week in bed. This is because I am currently incapable of moving my head without quite a large amount of pain - and I'm not, on the whole, unused to pain. I have whiplash, which is not a particularly fun experience at the best of times. (Neither is persuading doctors to take your injuries seriously when you're already disabled, something I have noticed often in the past. I have seen three doctors this week; one was much more interested in my television than dealing with my mild concussion and serious pain in the neck - "Turn it on so I can see the quality" - and two were much more interested in why I was using the wheelchair than the fact that I fell out of it. But I digress.)

The story behind my injuries (and enusing terrified refusal to leave the house) is, of course, wheelchair related. It seems that everything that makes my life difficult at the moment is about lack of access, or unsuitable wheelchairs, or people who won't help me to get a better wheelchair, or people who would rather I didn't use the wheelchair, or people who refuse to accommodate the wheelchair - well, you get the idea. The event in question happened on Thursday, when I was being virtuous and going swimming (but there's no need to feel too sorry for me - I don't go very often, and I may never attempt to go again after this week's adventure). I had it all planned out: it was one of my 'off days' from work, PA was available for three hours, and a nice, theoretically fully-accessible local bus goes from outside my door to the nearest swimming pool. Easy? You would think.

The theoretically fully-accessible local bus in question was the source of my little problem. On this particular bus route, and several others in the area, most of the buses are ancient and have had ramps fitted onto them only recently - and these ramps are not well designed. Marvin ('leccy wheelchair) usually manages to creak his way up them, although he does sometimes get stuck (always an embarrassing situation, what with the crowds of lovely passengers that then jump into ooh look, a poor cripple to help, how exciting action, grabbing hold of the chair and pulling it up, leaving me looking just a tad stupid. I look even stupider when I also fail to reverse into the wheelchair space, because I have no coordination and am a big bumbling elephant. "Mummy, why doesn't that lady know how to make her wheelchair go?") But on this fateful occasion, Marvin didn't make it. We got half-way up the ramp, hit the 'lip' at the top that joins it to the floor of the bus, and then Marvin and I toppled backwards. That's 110 kilos falling backwards, if you add the wheelchair's considerable weight to my own. No great surprise, then, that I hit the floor extremely hard, landing on my head. Very fortunately for me, Marvin landed quite a distance away. He's slow and he complains a lot, but that chair does look out for my best interests.

During the ten-minute-long aftermath of this incident, I lay on the floor trying to work out where my feet were while fifteen passengers (but no sign of the bus driver, of course) crowded around to see if I was OK. (The dear lady who offered to lift me onto the bus got a rather curt response.) Then we went home. Instead of enabling me to be all healthy and sporty and virtuous, my PA spent her three hours enabling my compulsive tea-and-sitcom habit. I have since spent the next few days considering such questions as: Shouldn't transport that's advertised as being accessible actually be accessible? Who are buses meant for, anyway? Is Disability Bitch right (as much as I hate to entertain that notion) when she tells me in her recent article on disability and sport that it's a bit stupid to make valiant efforts to exercise when my body demands tea, chocolate, the telly and the sofa? And does anyone else have similar horror stories about Access Gone Wrong? I'd be much cheered if you'd share them with me. Until then I'll be getting back to daytime television, those large bars of Green and Black's fair trade chocolate that are so lovely, and the permanently-seated situation that I find so much safer than attempting to leave my - ironically, now accessible - house. 'Til next time, Ouchie friends.

• Visit Through Myself and Back Again

The Sex Lives Of Us, Too

  • Posted by The Goldfish
  • 17 Sep 07, 10:03 AM

To mark the fiftieth anniversary of the Wolfenden Report, BBC Radio 4 is running a series of programmes exploring sexuality in Modern Britain entitled The Sex Lives of Us. I could bore your socks off about the Woldfenden Report, but as it has nothing to disability, I should summarise that this was a government report which recommended that what consenting adults got up to behind closed doors should not be the domain of criminal, pathing the way for the decriminalisation of male homosexuality in the UK (I happen to have blogged about this here).

In any case, the relevant bit to Ouch! is that Radio 4's leading Arts programme, Front Row is running a poll for the most significant landmark work of art on the subject of sexuality in the last fifty years. And there, in the shortlist of ten, stands (or rather, sits) none other than Alison Lapper Pregnant, the statue by which occupied the fourth plinth in Trafalgar Square throughout last year. This work is listed along with the likes of the movie Don't Look Now! and the song Je t'aime... mon non plus (ooh la la!).

The shortlist is inevitably going to be controversial, but it is both pleasing and interesting to see the statue on the list. It's not that it is an erotic work, but the mere image of a naked pregnant disabled woman challenges so many preconceptions about disability and sexuality; the idea that we can't have sex and have babies, the idea that our imperfect bodies should be hidden in case we frighten the pigeons. It is great to have these messages considered significant alongside other works which explored sexuality and our attitudes towards it.

You can vote for your favourite work from the shortlist here.

While we're here, are there any other works of art (in the most general sense) which you consider to have been landmarks in the changing attitudes towards the sexuality of disabled people? Or is our portion of the sexual revolution still in the making? Perhaps The Rocky Horror Picture Show for being the first film in which a male wheelchair user was depicted wearing high-heels, suspenders and stockings. Or maybe not.

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Disability Overload

  • Posted by Wheelchair Dancer
  • 16 Sep 07, 05:47 PM

Sometimes, you know?

Earlier in the week, I was being interviewed/filmed for a documentary. For the greater part of the 4 hour ordeal, I sat in my chair by the window, but when the light changed, I moved across the room next to the sofa. The cameraman was going to film precisely that .... me, in my chair, next to an empty sofa. I immediately wanted to transfer over because I thought it looked ridiculous ... the disabled woman ... confined to her chair ... not even being able to sit on her sofa. The team exploded in laughter and then teased me for being overly conscious about these types of things. I probably am. But I have had the kind of week where everything and everyone has conspired to remind me that I am different, differently-abled, handicapable, non-abled, not well-bodied (yes, really), disabled.

• Went to a posh restaurant with another wheeling friend. Couldn't pee.
• Woke up to find an article in the NYT about inaccessibility in restaurants ... gah.
• Wrote to the NYT about the consequences of eating and drinking as an important part of going out.
• Went to heroic lengths to get into a theater with same friend in order to see musical.
• Was weirded out by the horrible production about voluntary amputations (the latest hip thing to do!).
• Went to a restaurant the Times said was in the murky to mostly accessible category (you have permission to pee next door)
• Was part of a 4 hour conversation about disability and access in the city and in the world... was entirely incoherent (either that or they were just unspeakably unconscionably out of it.... is disability so hard to get?)
• Went down 43 steps (OK, carefully bumped down) into the subway, rode straight at the people in front of me, leapt the gap. The practical reason for this was no elevator where I was starting, but an elevator where I wanted to go.
• Wondered why the hell was I doing this. I have only ever seen two or three people in the subway in the course of my city life; everyone else is clearly smarter and is taking the bus.
• Was on the bus, bus power system ran out. No way off the bus. Waited until driver could get the thing started. Everyone else had gone, but they wouldn't let me get off, even though I could have bumped down the steps.
• Was recovering from the bus mess when the battery in the Iglide ran out. FLAT. NOTHING. 4 blocks from home.

I have spoken out, stood up, jumped in ... you name it, this week. All I want to do is go about my life, see my friends, and participate invisibly in the world. I don't want to be an advocate, activist, teacher; I want to be a restaurant patron, movie-goer, bus-rider

• Visit the now annoyed, but, happily, 4-toned haired Wheelchair Dancer


When 'heroic' and 'inspirational' aren’t dirty words

  • Posted by Elizabeth McClung
  • 16 Sep 07, 08:23 AM

I know for most people with disabilities the words “heroic” and “inspirational” are dirty words. Too bad. Terry Fox was my inspiration when I was able bodied, and not because he ran half way across Canada. Quite honestly, anyone who actually wants to run across Canada might be touched in the head (it is a very large, very EMPTY country). What inspired me was that with only a year of training, with a prosthetic leg made of a pogo stick and motorcycle shock absorber, he started running a marathon a day. One requirement of heroism is courage; defined by some (including me) as ability to confront and defy fear, pain, danger, uncertainty or intimidation AFTER having experienced them. What made Terry Fox my hero for twenty years was his humanity; he swore, he had bad moods, he would fight with his accompanying friend and driver Doug Alward to the point of not talking for days, he cried, and after two months he believed he was experiencing a mental breakdown. But he still ran, every day. Because that is what he had decided and believed in doing.

Here’s someone else I think is heroic; the person after months of intense depression, with no possible vision of a future in which their bones don’t ache with depression, or where each minute of life is counted off and the only thought is the relief death would bring. And yet, this person, with no belief in a future without depression, forces themselves to get up, to move, to go outside, to do something that day; not because they believe it is helpful but because they simply refuse to give up or give in. Or someone in this state, who attempts suicide, survives and continues. I know that person is climbing their personal Everest one day at a time, just to get up and have a shower.

This post was originally going to be about burn-out. This week, besides being told I have tendonitis in my shoulder (which I guess gives me one functional limb for a while), being told that my home care company is closing down I also reached such a state with my equally burnt out care-giving partner that I will be going into respite care. This might be called “falling down with a splat.” Indeed, ironically my shoulder might be partially damaged because I get flipped out of my manual chair about once a week (and land on that shoulder).

So, you see, I am in particular need of a hero right now. I hope in hating the word “inspirational” you haven’t forgotten it means “to inspire?” Because I need someone to come forward and tell me that yes, burn-out happens, being helpless happens, being alone and scared, being frustrated and crying happens but you just wake up and keep going. I need something to inspire me to fight for the future; even it if is a murky, uncertain and painful one. Except that people with disabilities hate being called heroic, or inspirational. And women in positions of high level management hate being singled out as path setters; but I hope that doesn’t mean they want the other women who look to them and try to follow their path to fail?

I think people with disabilities need to reclaim those words because I can’t be the only person who has won a passport to what Dave Hingsburger calls the “cool club” to find themselves falling down....hard. I don’t need a world class runner like Oscar Pistorius for a hero, I need a woman who is in chronic pain, chronic fatigue and still says, "I’m going to shower today."

In the end, the one person I found to tell me about getting back up into the chair was, surprisingly....me. Actually the able bodied me. Before going to my first Canadian Nationals in Epee I wrote a post about Terry Fox and myself. In the post I remembered the ways I motivated myself when previously bedridden; fantasizing about running and reminding myself that success is determined by getting up once oftener than falling down. I didn’t make my goal, stated in the post, of reaching the top 16 at the Nationals, but I made the cut (the athletes who advance to elimination) which qualified me for the Summer Nationals in May 2007. By then, I was in the wheelchair; called to a rather different type of competition. I am not going to make a “will to power” talk and vow to you that I am going to fence epee again, or run again; because I’m not. And right now it looks like I’m not going to be doing those 5K and 10K wheelchair races I was planning once my PT told me it would be “impossible” (I have a strange obstinacy to the word “impossible”). But hey, I’ve still got one good limb, right? I just need some new dreams; and the will to get back up.

To quote my 2006 able bodied self: “Because the fastest way to get rid of the pain is to simply not get back up. And for some of us (many I believe), there is always the whisper, the temptation begging you to not get back up. My life as a success is defined not by how much or closely I win, but by getting back up. Sometimes that takes a week; sometimes it takes a month; sometimes two years; sometimes 10 years. But know this, I GET BACK UP.”

I sure could use some company about now; someone to tell me that yes, sometimes Life is dragging us behind its pickup truck but damn it, those gouges will heal (Well, maybe not THAT one, but you’ll get a cool scar) and life will go on. Because I have always had the intention to lead a heroic life; one in which I face my fear, pain, uncertainty and intimidation. And having a disability certainly isn’t about to change that. I just don’t know how....yet.

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How to employ ability

  • Posted by Lady Bracknell's Editor
  • 15 Sep 07, 01:59 PM

While I was traveling into the office by bus on Wednesday morning, and most of my concentration was - as ever - dedicated to keeping myself sufficiently-firmly braced for sudden and unexpected braking not to result in hideous injury and six months off work, my eye was caught by a copy of this poster which was fixed to a lamp post.

I was intrigued. I mean, you see a certain amount of worthy rhetoric here and there about employing disabled people being the socially-responsible thing to do. But it’s much rarer to see anyone pointing out that, far from being inherently frail and incompetent, disabled people have very often developed particular skills as a direct result of living with their impairments - skills which some of their non-disabled peers would give their eye teeth to have mastered.

This is a message I bang home relentlessly every year to the disabled undergraduates I speak to at Liverpool's universities. Got a PA? Then you already, before you’ve even graduated, have experience of managing staff. Can’t do things the same way the normies do? Bet your problem-solving skills are second to none. Got dyslexia? Every creative team would benefit from having a member with dyslexia: when you’re work-shopping solutions, you really need someone who thinks differently from the herd.

Anyway, imagine my surprise when I realised that the Employ Ability campaign is the brainchild of the DWP. (I’m sure I’m not the only person who reads Ouch who has learned over the years to be deeply suspicious of the DWP’s understanding of, and commitment to, disability equality issues.)

So I read on, expecting to wince at any moment. But you know what? It’s really not bad. I'm struggling to find anything at all with which to take major umbrage. I was particularly pleasantly-surprised by the calibre of their guidance on talking to disabled people.

Of course, the big question is whether the campaign will have any impact on the hearts and minds of employers. That will probably depend on the way it’s marketed and the size of the budget which is earmarked for that marketing process. One small poster on a lamp post at the entrance to a railway station isn’t going to change the world, that’s for sure. But maybe that’s just the early outrider for a massive media campaign.

Well, it might be….

• Visit The Perorations of Lady Bracknell

Important news update

  • Posted by Jemma Brown
  • 14 Sep 07, 09:35 PM

Well ouchers there is something you probably don’t know about me, come to think of it I’m not even sure all my friends no about this, guess they do now. In addition to having twisted mangled bones I have a hidden disability yes ouchers I am one of the 121 million people thought the world with depression and no I am not the sad (like the pun there?) kind of individual that spends there days looking up disability related statistics. I know that because I read this article by Emma Bowler. Now I'm not going to tell you too much about this article because I think you should read it yourself.

One of the interesting thought provoking sections of the article suggests that mental health disorders such as depression and often more debilitating that many physical disabilities, and I would have to agree with that particular statement. But then the question arises if its so debilitating and having it combined with a physical disability is supposed to make the situation a whole lot worse, then why cant I get CBT (cognitive behavioural therapy) on the NHS? (Don’t you just love the postcode lottery?)

In other news Duke of Edinburgh, is back on! It was cancelled last year witch was annoying but its happening we are descending on the Purbeck hills this Thursday, I will of course give you a full and detailed report of events from a crips point of view probably involving lots of falling over. I’m all ready for action; I even have new walking boots. Yes shocking stuff I managed to find walking boots that fit my crippled feet, and even better there actually really comfy and had £20 off there RRP.

Also on my first day back at collage last Monday, in my very first lesion, with a brand new class of people and a new teacher, what happens? My video magnifier breaks. Lots of beeping and flashing colours, It couldn’t have happened at a worse time, what’s even more shocking is that its only about 6 months old, and that no one has touched it since I last used it well over 2 months ago, it broke completely on its own. This is truly pants as I use it in literally every lesson to read things like textbooks, and it even has a really clever feature that allows me to quickly flick the camera round and read off the white board. This also means that the poor learning support unit (I actually feel sorry for them the amount of stuff there trying to do) are franticly having to type up bits of textbooks and attempt to scribe bits of power point presentations and information off the white board simultaneously.

In other news I’m still loving a piece of technology by a Canadian company called Issist, the provide free internet based screen magnification soft where and even better than that is that its really easy to use, has an online support forum and can be used on any computer anywhere by anyone (with the exception being of course the one place I could use it most…. But that’s a whole other issue I best not go in to, encase I get sued) they are also trying to develop and give it the ability to have basic screen reader properties. It has lots of different options for magnification levels, contrast settings and you can even change the size colour and shape of the mouse pointer, if your VI it’s worth a download.

Finally in the most tragic of news, I have spent 4 days trying to write this blog entry. my computer had been seriously rubbish and keeps crashing every time I try and use a certain piece of document processing soft where and I lose everything every time it does, so apologise if this entry is a bit error filled, I’m trying to do it quickly before my computer can crash again, and of course stopping to save after pretty much every word. This could make this collage year very interesting…

STOP PRESS!

I have just read a really interesting headline witch confirms Finland is no longer one of the world suicide capitals, what great news for the Fins.

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Cold Shoulder

  • Posted by Mark
  • 14 Sep 07, 01:05 AM

The BBC has news about the Swiss government denying citizenship to a man from Kosovo both because he's a Muslim and because he has a disability. According to the article, the Swiss government claimed that the man's disability would put too much of a burden on the country's taxpayers. The discrimination evident in this decision is appalling, of course. But it also makes me wonder if the Swiss are similarly hostile to their own citizens with disabilities. And it makes me think about the plight of refugees with disabilities. They're a particularly vulnerable population who desperately need the social and health care services available in the developed world, but rising anti-immigrant sentiments in both Europe and the States are forcing many refugees with disabilities to live in the shadowy margins of their adopted homelands. It seems to be an issue that has received little attention, which probably shouldn't be that surprising.

Thanks to my friend Rose for the tip.

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I'm Being Offered Accomodations At the Office? Weird!

  • Posted by Zephyr
  • 11 Sep 07, 09:02 AM

I started a new data entry job today at a geological company downtown. It was originally supposed to be a work-from-home job, but there was a problem uploading the data, because the original data is of poor quality, so it's become an office job. Now that the migraines are under control, I feel up to 10 hours a week outside of my house. Hell, getting out of the house is good for me. I spend too much time at home alone anyway.

I am rather impressed by my new employers. During the set-up chat on Friday, I asked one of the supervisors if the hours could be flexible. I explained that although I could set up hours ahead of time, some days I get too sick to come into the office. I asked her if it would be OK for me to make up those hours another day. She said absolutely! She seemed to understand that the sporadic nature of my illness just fine.

She also told me that if I needed any accommodations, it would be no problem. I have *never* had an employer offer that before. Most of my employers have been pretty unreasonable about the disability thing. We'll see how it goes, and if she'll put her money where her mouth is.

Yay! I have a job that will supplement my disability income and guarantee me the maximum that I'm allowed to earn. Hooray!

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*May contain adult content*

Speak up my DLA

  • Posted by Crippled Monkey
  • 10 Sep 07, 05:24 PM

OK word up all visually impaired persons out there with a voice and a wish to be more independent.

The RNIB are asking for your audio diaries to support their campaign for getting you more money as part of your DLA payments - that's Disability Living Allowance for the uninitiated.

The deal is that you are currently not entitled to the 'higher rate mobility' part of the allowance. The RNIB are lobbying parliament in December and want to hear your stories of how that extra cash would really help you towards independence.

Summarising, it is felt that blind people - though they may be physically mobile and able to move from A to B - can't easily do so due to lack of information. i.e. Johnny Blind could walk half a mile to the hospital no trouble at all if he could see roads, signposts etc, but he can't so would need to pay for a cab to drop him right outside the clinic.

Yeah, you might say, but he's blind! he doesn't have mobility issues so shouldn't be entitled to a high rate of mobility.

RNIB say that blindness brings on a substantial mobility problem. Though it is a sensory impairment, not a physical mobility impairment, it amounts to the same thing. So, a person with chronic arthritis would also find it difficult to get to the hospital unless they took a taxi ...

Crippled Monkey thinks that this is a semantic nightmare. Maybe blind people are being kept from the higher rate of mobility because of linguistics. 'Mobility' is for people whose bodies are, like, all twisted up so they can't, like, move? Whereas blindos bodies look OK to me, kinda thing? If it were renamed the 'getting there' component, perhaps upping the amount given to our sightless cousins would make more sense to the government?

Anyhoo. Go and look at the RNIB's DLA audio diaries page for how you can join in and get political wiv a microphone. "testing testing, 1-2 1-2. I can't carry my box of groceries home and I either sit down and live here forever or spend a tenner on a cab despite being long term unemployed because no bugger will give me a job". [Link via esteemed Ouch guest blogger Lady Bracknell's Editor]

Join me, be a whiney, whinging moaner!

  • Posted by Elizabeth McClung
  • 10 Sep 07, 12:23 AM

I sat locked into the wheelchair space on the public bus while a small but determined older woman was trying to jam her walker in the small space between me and her seat. The walker wasn’t going all the way in. So she just kept reversing it and lunging forward: bam, bam, bam. I was about to give her points for determination when I leaned forward to look down at what she was trying to smash out of her way: my feet.

Never try to educate an obsessed woman smashing one of your body parts with a walker, that’s my policy. I pulled my legs further back and reminded myself to check for toe breaks later (how many places is a toe supposed to bend? Four?). Having someone treat my body parts the same as fallen tree branches is depressing. Which is pretty much what this post is about: that while people with disabilities don’t like to be seen as “heroic”, “Inspirational” or “plucky” they aren’t too keen at talking about being depressed, lonely, and morose.

Being disabled sucks! (It does, for at least most of the people some of the time)

Big news flash, huh? Oops, I think I was supposed to say “I am a person with a mobility issue who recognizes my equality but is hindered by the social model of disability” My retort: Stairs.

I’m not saying I’m not an equal person. I’m just saying that whether you believe in God or plate tectonics things like beaches and mountains didn’t have “accessibility” in mind. And society? My friend in high school was born with one arm and he thought two arms brought about a sluggish stupidity. That might have been the amount of times he was flipped over the front of his bicycle by people swerving, opening doors in front of him and other related “double armed” behavior. Or as he said when they cancelled a class trip after he had been found climbing up between floors on the outside of hotel with water balloons held in his teeth, “Other people were doing it.” Guess leaping around four floors up with one arm isn’t either “equal” or “plucky.”

If I am a person with a disability, that still means I am a person right? I still get to be unhappy, upset and realizing that, truth be told; I liked life a lot better as an able bodied person. Whoops, that was another phrase I’m never supposed to say. I know I am supposed to move on, thank whomever for each day and always look on the bright side. That just requires a few more times passing out and a bit more brain damage since up till now I’ve always been sarcastic, with a biting tongue which didn’t suffer fools gladly. I’m the girl confronted because people had the impression I liked torturing children when I was only reading out Edward Gorey’s The GashlyCrumb Tinies in class (an pseudo-victorian alphabet of dying children): F is for Fanny sucked dry by a leech, G is for George smothered under a rug. Admittedly, I do give that particular book a lot as Christmas presents (along with female pleasure toys to my pastor’s wife....because I care!).

Got a little distracted there. Back to how I don’t like being disabled. And I don’t. It wasn’t in my top 20 life choices, or the next 20. I think it came right after, “Career in toxic fume factory” Am I the only grump?

Know what sucks:

Disabled Bathrooms: Can’t find em, they’re not working, they require a special key to get in, or someone has taken in a picnic, a book and plans to make an afternoon of it.

“Modified” or “Adapted” – This is often slang for “twice as hard” (except for modified vehicles; they’re cool). Talk to me later about hand-cycles and hills.

Ladders – they laugh at me late at night when no one else is listening, curse them.

PMS/PMT – No, it’s not limited to being disabled but if you have it, you’ll agree with me. If I have it, you’ll get out of my way…NOW!

More Disabled Bathrooms – this sucks so bad I’m listing it twice.

People saying stupid things: “It’s not how long you live, but what you do with your life.” – Does this phrase come with a gun to shoot yourself with if you happen to suffer with fatigue?

Curb Cuts: When you put in a curb cut, isn’t it supposed to actually go all the way to the pavement, instead of having a two inch difference?

Height: I used to be 6’3”, I was well versed in giving dirty looks down my nose at people. Now in the chair I am 5’1’. There are 11 year old children taller than me. SUCK!

Mobility multitasking: I used to walk and drink stuff simultaneously. I could talk on my phone and walk. I even used to read and walk. Now the most I multitask is pushing the chair and saying, “Excuse me please!” (while in my mind I am thinking, “Jeepers, when did ambling aimlessly across the ENTIRE sidewalk become a national pastime? I’ve seen drunk people walk straighter than you.”)

Fatigue: it makes you actually think things like “I need to count my cutlery, I wonder which day this week I will be strong enough to do that?”

(add your own list here)

I’m not sure what is wrong with saying that regardless of whatever model you use to explain what is wrong with the world and disabilities, sometimes things suck. Because they do. I am a human being, and I will defend my right to be a whining, moaning, whinger when I feel like it (like today for example). And let’s face it, I’m the type of person who if they lived next to a superhero family would be going, “Why do I have to go so slow when they get to fly everywhere? Walking blows!”

Of course, I only know what sucks about MY disability and as you’ve seen, I can go on and on about it. The great thing about the BBC is they have a handy “whinge” section called “Comment on this entry” where YOU can tell everyone (and me) what sucks about your disability, or your day, or me, or your neighbors....

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Screen Time

  • Posted by Mark
  • 9 Sep 07, 08:19 PM

I was chatting with a deaf colleague the other day about the portrayals of deaf characters in television and film. He mentioned shows like Jericho and Weeds, both of which feature deaf actress Shoshannah Stern. I asked him if he had seen Babel, a film with a prominent storyline about a deaf Japanese girl that received substantial critical acclaim last year. My friend's reaction was unequivocal. To paraphrase him, "The deaf community will not watch movies that feature hearing people portray deaf characters. Plenty of deaf people auditioned for that role, but the director chose a hearing person. I have no interest in seeing that movie."

For years, people with disabilities have complained about Hollywood's cluelessness in its portrayal of people with disabilities. Besides showing a penchant for exploiting characters with disabilities for easy moments of sentimentality, the entertainment industry has shown little interest in using actors with disabilities. Every time you see a TV show or movie featuring someone who is blind, deaf, a wheelchair user, autistic, or [insert disability here], odds are better than even that the actor in that role is faking the impairment. And while an actor's job is to play make-believe, there's an argument to be made for authenticity. We no longer consider it acceptable for white entertainers to appear in blackface. This is not the Elizabethan era, when men performed female roles on stage. But it's still okay to use able-bodied actors to portray people with disabilities, and in doing so, a particular message is sent. The message is that disability is not an innate characteristic, but an oddity that can be mimicked with the appropriate accessories or mannerisms. A wheelchair. A cane. Slurred speech. Hollywood distills disability into its most simplistic and obvious elements.

Some of us are trying to change things and provide people with disabilities with more opportunities to participate in all levels of content creation, but that's a long-term goal. In the meantime, a few questions for all of you: how would you like to see people with disabilities portrayed in popular media? Are there specific stories you want to see? Can a disability-specific media outlet still have mass appeal?

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Hey there, Disability Bitch!

  • Posted by Wheelchair Dancer
  • 7 Sep 07, 05:32 PM

"Dammit, Disability Bitch. Your most recent column is getting to me, dammit. I have long been distantly amused by your Tanni-Grey-Thompson-hate thing; I smiled at your hate-inspirational-super-crips thing; but this... this.. This is beyond the pale," said the urbanely-citified wheelchair dancer, stuffing an odd combination of the latest organic, funky-junky-raw California new age fungus into her New York mouth. She sits up; her leg is twisted over her head and knotted around her sides, and her head pokes out the middle. "Get down off your moral high horse, girl -- yes, I know you are on the sofa; it's a metaphor -- and splash around in the mud with the rest of the group of wrestlers."

OK. So, I couldn't really do that with my legs. Nor do I mudwrestle. But seriously though, I do want to talk about your exercise phobia. Sport when explicitly framed as a way of overcoming the drama and trauma of disability is a bad thing. No one wants to be exercised in that environment. "Team spirit, what? Come on all you team-cripples. Get up and be a superhero." At the same time, I abhor exploits of superphysical endeavour that are explicitly portrayed as an inspiration to the rest of us and to the rest of the world. Inspiring us to get our lazy asses off our seats? Showing the world that our defunct bodies can still do useless stuff -- this chap just slogged up a mountain. It's his 5th go; he kept failing. And now, he's off to Kilimanjaro? Way to go, sorta, dude, not. There are limits. So far, then, my dear Disability Bitch, I am on the same page (if not the same sofa) as you -- move over and pass the nachos. We must part ways soon, however.

Removes tongue from cheek. Looks at it. Yet another amazing feat from the wheelchair dancer, ladies and gentlemen.

Crip brains and crippled brawn are not mutually exclusive -- nor are health and crippledom (not in every case, though arguably in some). Are facilitated sports and enforced exercise really the same thing? (Yes, I am a pedant.) And yes, we are cripples. The cry of jolly hockey sticks won't rally us -- bent canes won't work either. Exercise may or may not improve aspects of our disability. It certainly won't cure us. But exercise and sports are a viable and meaningful aspect of the disability community. Even if you hate it, the fact that there are crippled jocks represents yet another strand of participation in so-called normal life. It's not the exercise or the sport. It's what the non-disableds -- I might indeed say non-disabled writerly types -- make of it. We wouldn't have to read about Mr. Mountain Climbing Blind Hand Gliding Running Super Human if the writerly types weren't exercising their penmanship.

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Super Human Extra Special

  • Posted by Bipolar Works
  • 7 Sep 07, 01:33 PM

The recent posts by lilwatchergirl and Elizabeth have got me thinking. It seems to me that all this extra physical and mental exertion required to just get through the day as a disabled person means that some of us have developed super human extra special skills that could be used to our advantage in other areas of our lives e.g. work, study, friendships and relationships.

Let me give you some examples from my own experience of having to manage my bipolar disorder and navigate through the minefield that is the mental health system. I believe that through necessity this has meant I have developed the following super human extra special skills:

1. Super human endurance
From having to tolerate high doses of mind numbing drugs that had severe side effects such as Parkinson’s stiffness and tremor, difficulty swallowing, akathesia (severe anxiety and restlessness) so I couldn’t even write with a pen, over sedation so I couldn’t even lift my head off the pillow, unhealthy hospital food, severe boredom, passive smoking, odd behaviour from other patients.

2. Super human patience
Waiting for hospital appointments to come through. Particularly the Cognitive Behavioural Therapy appointment. It took at least 6 months, and they kept trying to chuck me off the waiting list by sending me letters which said “if you don’t reply to this letter we will assume that you are no longer require this service and take your name off the waiting list”. You can't fool me. I got the treatment. Eventually.

3. Super human organisational skills
To remember to attend all my medical appointments when until recently, I did not receive reminder letters. To remember to take my medication morning and night. To juggle my bipolar disorder around my work, study and social life and not get ill.

4. Super human negotiating skills
Negotiating with the consultant psychiatrist and mental health nurse in the psychiatric ward when very ill not to over medicate me or give me unsavoury medication. Negotiating with the consultant psychiatrist to change my medication and recommend to my GP to give me some extra supplies for emergencies. Negotiating with the CPN with regard to appointments, goals, targets, my Care Plan. And worst of all, negotiating with the GP's receptionist to get an urgent same day appointment. Now that takes real skill ;-)

5. Super human communication skills
This one really goes together with the negotiating skills. Asking questions to elicit information and make up for my consultant’s lack of communication skills (not the last two consultants who have been fine). Getting my consultant’s trust so that I can participate in the decision making process about medication and treatment.

6. Super human empathy
I’ll never forget my psychiatric ward experiences and the other patients in there. It made me realise what others take for granted and gave me a whole new meaning to the phrases “mental suffering” and “diversity of the human condition”. I was one of the lucky ones, who had family support, who was able to negotiate over medication, who was not considered a danger to others and was able to talk my way out relatively quickly. Others weren’t so lucky, didn’t have a voice and had been institutionalised for six months or more.

7. Super human survival instincts
I got out. Thank God. Now I can get back to rebuilding my life.

What super human extra special skills have you developed as a result of your disability?

Would you dare to be clever and use them on an application form for a job?

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Advice and support for getting a job and combating discrimination in the workplace for people with bipolar disorder and other mental health conditions.

Disability: a full-time job

  • Posted by lilwatchergirl
  • 6 Sep 07, 06:31 PM

I'm quite concerned that seven hours of support from my PA no longer seems adequate to get enough done. This is mostly because getting ready to go to work takes up quite a bit more time than getting ready to sit around the house watching TV used to take. I spent this morning trying to make a dent into my sprawling pile of paperwork. (This was important to do because it is becoming an independent life form and colonizing three rooms of my flat.) All I managed to do, before my PA's two hours were up, was to put it into little piles. Then suddenly I was on my own with sixteen terrifying stacks of paper called things like 'Access to Work', 'benefits evidence', 'tax credits', 'direct payments' and 'miscellaneous' (a large pile which includes a box of whiteboard markers, three Cura-Heat pads and the phone number of the social worker who has unceremoniously abandoned me until 2008). Then I spent the morning - the entire morning - working on my tax credits form. Which involved digging out a year's worth of bank statements (I file so badly that this alone took two hours). I regularly had to stop in order to burst into tears and/or throw the form across the room, especially when it occurred to me that all this work will go completely to waste and have to be repeated, because I already know I'll be turned down on last year's income and have to apply again based on this year's. So why do I have do this senseless thing? Because it's procedure.

The concept of procedure is generally sending me a bit loopy at the moment. Once I'm done with tax credits, I have to start sending off Access to Work forms so I can claim back my taxi fares (each form has to be individually signed by my manager, once a week, forever). Then there are the hundreds of phone calls - quite literally - that my Girl is making on my behalf to every flipping agency in the flipping world, from occupational therapy people to wheelchair services ("No, we don't want to assess you for a new wheelchair... OK, now that you've complained and told us you urgently need it for indoor use at work, we'll consider getting round to it in three months.. Oh wait, Access to Work are involved, well OK then, how's next week?) By far the most fun is the four months of hell we're having over a tiny lock that needs fitting to an insignificant side gate to my building, so that I can access my own home. With this, Camden Council are breaking the DDA so appallingly that we are about to see if we can take them to court. The lock would cost about £50 and take them twenty minutes to fit, but procedure means that instead we end up ringing them every day and writing seven-page letters and getting put through to people who refuse to talk to us because we're private tenants, even though they were happy to speak to us three months ago when they cheerily agreed to do the work. So we just keep on phoning. And nothing happens. And I still can't access my flat. ARGH.

Elizabeth's recent post on Disability Time got me thinking about how much we let medical services, care services, government organizations and the like run circles around us, and we don't object. But maybe we should. Maybe it's not in the best interests of my health, independence and well-being to spend my days off - which I need for recuperation, because I'm always exhausted - finding useless pieces of information about income that doesn't count for anything and filling out forms which will gain me nothing. Alas, though, I have no ideas for ways to fight this onslaught of procedure that makes disability a full-time job. Does anyone else?

And now I'm going to get back to this tax credits form, since after spending all morning on it, I spent all afternoon asleep, and it still isn't done. And tomorrow I'm going to work, because this full-time job doesn't pay anything. It really should.

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Hares: Stop Racing Ahead of the Turtles

  • Posted by Zephyr
  • 6 Sep 07, 08:49 AM

I am a painfully slow walker, and I mean that literally. Walking really hurts when your ankles are so damaged you're waiting to get them replaced. I've gotten used to going at a snail's pace, but it's still a pain in the arse when I'm crossing at intersections. I'm always deathly afraid some jackass will see the light turn green, and barrel into me before I'm safely on the sidewalk.

It drives me nuts that friends and acquaintances don't always remember to keep pace with me. If two pals are walking down the street together, they stay abreast of one another, right? Not with me. They keep pace for two seconds, and then they forget I'm crippled and next thing I know, they're half a block ahead of me. It really annoys the hell out of me. How hard is it to remember to keep pace with a slow walker? I know it's a bit irritating to have to walk slowly, but sheesh, it's good manners to wait for your friend.

I have a friend who walks incredibly slowly with her one crutch. When I was more mobile, it actually hurt me to walk with her, because having to stay on my feet that long made me really sore. But you know what? It was worth it to behave courteously towards a friend. How come not all of the people in my social circle can get that?

I used to scold people for doing it to me when I was a kid, but inevitably, they'd make it about them. "I can't walk that slow!" Suck it up, buttercup. You can and you should. Do people have any idea how it makes me feel when they leave me behind? I'm not talking about doing it once, and then learning from it. I'm talking about people who constantly seem to forget I'm crippled, and race ahead of me. It makes me feel really devalued.

At least some adults get it. When I was a kid, no one ever bothered to slow their pace for me. I was always expected to keep up with the gang, or too bad for me.

Zephyr's message to the bipedal ABs: SLOW DOWN AND WAIT FOR ME!!! It's good manners. Thank you.

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In The Company Of Others

  • Posted by Mark
  • 6 Sep 07, 02:34 AM

One of the noteworthy aspects of living in Minnesota--aside from the blizzards and the hot dish and the abundance of blonde people--is the fact that it's one of the few states in our imperfect union that offers 24-hour nursing care to those of us with an affinity for breathing with a ventilator. Now, just because the state offers nursing care doesn't mean it's easy to find actual nurses. As in much of the country, we have a nursing shortage in these parts and home care isn't the first choice for most people entering the field. When I first moved here and used a home care agency, I was constantly dealing with gaps in the schedule and some nurses who were--how to say this nicely--less than ideal matches. A few years ago, I decided to manage my nursing care without an agency and things have settled down a good deal. My nurses get a better wage and I get a little more freedom to determine who is going to work with me.

I sometimes get asked what it's like to have someone around me 24/7. I usually respond that it's probably a little bit like being married to seven or eight different people. When you're with someone for eight or more hours at a stretch, you can't help but learn quite a bit about that person. And in turn, they are privy to many of the details of both my professional and personal lives. They know my family, friends, and colleagues. They know it's useless to talk to me when I'm in front of the computer. They know about my cravings for Pringles crisps and my liberal politics. Some of my nurses probably know me better than most of my relatives. I do manage to carve out a private life, but it takes work and some acquired assertiveness. And we Midwesterners are not renowned for our assertiveness.

I've also learned to play to the strengths of each of my nurses. I have one nurse that I take with me when I need to go shopping for clothes. When I need help with fixing my computer, I have a couple other nurses to whom I turn. I figure that my experience with managing my own care is good preparation for a career in middle management.

It probably seems weird to most people; having someone within earshot nearly every minute of the day. But without my nurses, I'd probably be much less independent. That may seem counterintuitive, but not from where I'm sitting.

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Yoda, drinks with umbrellas and Disability Time

  • Posted by Elizabeth McClung
  • 5 Sep 07, 08:15 AM

Do I look like Yoda? I hope not, I certainly don’t act like Yoda. Update: I have both the emotional maturity and dress sense of a 17 year old, okay! So please, stop trying to put me on Disability Time.

Disability Time is how society assumes that by becoming ill or disabled that you are now patient, ever waiting, mature, looking far into the future, wise and always ready. That’s Yoda. Me? I am the goth version of the girl from Clueless.

Ever Ready: My relationship with the medical system is much like a spy and her controller. I am supposed to sit, all day, waiting by the phone for a call from my doctor, specialist, home care, case manager, medical test booking, O.T., P.T., etc. The phone rings. I pick it up. A voice asks, “Elizabeth McClung?” I verify the code name, they continue, “Medical Imaging, the 11th, 3:00 pm, third floor.” I am to silently pack my gun, a copy of Der Spiegel (spy reading), my Medical Card and go meet my contact.

These days, I am going rogue. I know that I should hang up but occasionally I will break cover and ask, “Just out of curiosity, what test is this?” They stammer, stutter, check the book and say, “CAT scan angiogram.”

“Oh.” I try and remember what specialist might have ordered this, “Is that the one where you put an IV of liquid metal through my heart which makes me feel like my chest is on fire and that I am peeing uncontrollably simultaneously?” (This is a REAL medical test I am having in a week.)

“Check.” They hang up.

Seriously, if I had the energy to sit by the phone all day, wouldn’t that mean I also have the energy to, for example, sit at a bar sipping colourful drinks with umbrellas?

Patient; Wise; Mature: Since my energy patterns resemble a feline (16 hours of sleep, 8 hours of scratching someone’s leg to feed me), I have to take the local disability transit system called Handydart. Regular People buses come every 10 minutes and you decide to go when you are ready (radical concept huh?). Handydart has to be booked at least FOUR DAYS in advance and comes with a 45 minute pickup window; and the trip may take 20 minutes or over an hour. This means, for example, if I need to go buy more batteries for my....um....happy toys, I need to know four days in advance? And the round trip could take three and a half hours? Is the same true for all of life’s necessities: for buying gummy bears; for going to see the Zombie Film Festival, for getting fishnet stockings and a PVC pirate outfit? If I was the type of person who knew what they were doing four days from now, I would have stocks and shares and use words like “maximizing potential” instead of “pretty, mine!”, “dead people are my friends” and running (wheeling) away from home to hide in the video arcade until Linda finds me. I mean, I try to play Lazer Tag in a wheelchair. Does this sound like someone who has developed maturity through disability?

Looking to the Future; Extreme Patience: In a nationalized health care, getting referred to a specialist, getting a test done or (worst of all) needing an actual OPERATING THEATRE for something like exploratory surgery is akin to planning a lunar launch. You are looking at months if not years. My PT told me that my overall diagnosis should be complete sometime during 2009 (true!).

For a short version of disability time, just walk into ER on a long holiday weekend with an infected toe – you will be waiting so long that people will assume you are staff.

My favorite personal UK NHS story was when my GP, after consultation, contacted mental health for immediate assistance. I got a phone call from mental health. They wanted to know was I depressed, severely depressed or imminently suicidal. I said probably imminently suicidal.

Fine, they said, a letter from the local mental health counseling centre should be sent out to me within two to three months.

“So I will get counseling in two to three months?” I asked with a mix of hope and despair.

Oh no, they assured me, the letter would tell me when I would have my assessment for counseling, which with current waiting lists would probably be in six to seven months.

“And if I wasn’t imminently suicidal?”

That would be a much longer wait.

- Six Months Later- (during assessment)

I asked, “When can I talk to someone about my anorexia?”

The Gatekeeper responded, “Oh…not anorexia. There’s only one anorexia counselor in the whole region. That’s a two year wait at least.” She looked hopefully at me, “You don’t happen to be bulimic are you? I could get you to see someone in a few months.”

I had the expression on my face you get after being repeatedly run over by a shopping trolley. “Two years! Do you understand what anorexia is?”

As she gave her ‘my hands are tied’ speech I finally understood that Monty Python wasn’t wacky comedy or satire, but rather a biting in-depth documentary of various British institutions.

Oh Disability Time! Don’t even get me started on how I was given the slap down by medico (medical enforcers, kind of like mob leg-breakers) for suggesting that my home care (“for assisting in independent living”) might come with me when I leave the apartment. Hey, someone has to carry the Starbucks’ frappachinos. This manual wheelchair didn’t come with a cup holder.

I know there is another “Disability Time” which is about the before and now time. Before I used to roll out of bed, brushing teeth while I put my hair in a pony tail so no one noticed how greasy it was. I drank OJ while jumping up and down into my hip huggers and I was outta there: bed to door in 10 minutes. Now that is around 90 minutes. I’ll talk about that kind of disability time some other day, what I want to know is when are 'they' (the society and medical people ‘they’) going to starting thinking about ME. When will 'they' provide an alternative structure for us shallow, fun loving, often impulsive, impatient and high emotional maintenance people with disabilities? Face it, I want to be the medical system’s bouncy, needy and easily distracted girlfriend. “Oh it sparkles, buy it for me?”

I want to know when Disability Time will be changed to meet MY needs. Hey, while you’re here, can you pass me another of those umbrella drinks.

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Lincoln Rhyme

  • Posted by Lady Bracknell's Editor
  • 4 Sep 07, 11:33 AM

I ought to have known about Jeffery Deaver’s Lincoln Rhyme series of novels a long time ago. It’s not as though I haven’t spent a lot of time over the last few years discussing the generally one-dimensional representation of crips in fiction with like-minded friends. (See m’learned Goldfish’s list of embittered crip Bond villains here .)

Two of my favourite novels of all time are Mary Webb’s lyrical, haunting “Precious Bane”, which I have read at least once a year for the last thirty years, and William Horwood’s heart-rending, triumphant “Skallagrigg”. Marmite Boy fell so much in love with Skallagrigg that he now carries a permanent reminder
of it around with him. And the Goldfish (again) wrote an excellent review of it on Blogging Bookworms.

So, y’know, given that, as a community, we express so much distaste for the fact that disabled characters in fiction are almost always portrayed as either angelic and inspirational or twisted and evil, I find it nothing less than astonishing that Lincoln Rhyme has never come up in conversation. I mean, for heaven’s sake, the first novel – The Bone Collector - has actually been made into a film!! (OK, so the film is pants, but still…)

How did I find the books? The first four were on very, very special offer from my book club. They were so cheap that, despite the fact that their covers didn’t appeal to me in the slightest, I nipped over to another website which allows customers to post reviews. People seemed to have been kept on the edges of their seats by them, so I thought I’d give them a go. Once they arrived, I couldn’t put them down.

Lincoln Rhyme was formerly head of forensics for NYPD. A beam fell on him and trapped him while he was investigating a crime scene, and now he has quadriplegia. He has control of the ring finger on his left hand but, apart from that, is paralysed from the neck down. And he is Not Happy. In fact, at the beginning of The Bone Collector, he’s arranging for someone to help him kill himself. Those plans are interrupted by the fact that his knowledge and experience are desperately needed to thwart the actions of a serial killer. He’s tremendously reluctant to work the case but, ultimately, the pleasure he gets from tracking the murderer down gives him a reason to carry on.

Having said that, Rhyme’s response to his impairment remains convincing as the series progresses. He’s brilliant, and he’s a decent human being at bottom, but he’s cranky, cantankerous and frequently bitter. I don’t know what sort of research Jeffery Deaver did into responses to acquired impairment but, whatever he did, he did it well. The only thing which really stands out for me as being unrealistic is that Rhyme’s PA, Thom, works 24 hours a day and appears to survive without any sleep.

Why did Deaver choose a quadriplegic main character?

"Lincoln Rhyme came about in, I guess I'd say, a very calculated way," said Deaver of his franchise player. "I wanted to write a book with this very simple concept: My hero is in a locked room at the end of the book, utterly helpless, no one coming to save him, the killer -- the bad guy -- is there. What does my hero do to get out of that? And I thought about, well, possibly having him tied up, or handcuffed or duct-taped or something like that -- but that's a cliche. I wanted to go to the extreme. I like high-wire acts. I like to push everything as far as I can. So I decided to make him -- based on that very simple, rather calculated thriller premise, a quadriplegic -- completely, permanently immobile.”

Rhyme was originally intended to appear in just one book. But Deaver’s readers loved him so much that he, and his partner Amelia Sachs (who has arthritis), now have a whole series devoted to them.

Health warning: Deaver is one heck of a skilled writer, but his books are not for the squeamish. People are killed unpleasantly by the use of a surprising variety of imaginatively-brutal methods and, while the deaths themselves are rarely, if ever, explicit, the forensic studies of their aftermaths are detailed and realistic. If you find Agatha Christie gory, I’d advise you to stay well away. If, on the other hand, you’re made of sterner stuff, there’s a chronological list of the Lincoln Rhyme novels here.

• Visit The Perorations of Lady Bracknell

New York City

  • Posted by Wheelchair Dancer
  • 4 Sep 07, 06:24 AM

We're back in New York.

Every time I come back here, I get this feeling of tremendous privilege. I live here, but I still feel the excitement rising as we land. By the time I am crossing the road to the taxi stand, I am definitely hyper. I bounce around; I urbanwheel -- ride at the people, watch them flee. The culture, the food, the shopping. And, oh! The inaccessibility.

This trip, Wizard surprised me. I thought we were sneaking away for a quiet weekend in the city; he planned a jaunt that included two friends. They've just recently moved to San Francisco from Amsterdam, so this was their first trip to New York. And we got to see the city through their eyes. They are accustomed to looking for disability issues and in San Francisco, you get used to everything JUST being accessible: public transport, restaurants, shops, bathrooms, theaters, cinemas and, for the most part, attitudes. But in New York, it's a whole different ball game. Several times in the day, I could just see the shock in their eyes.

How is NYC inaccessible? Well, let me count the ways. This is just going on the question of wheelchair use for getting around-- never mind important questions of housing, health care, or employment. And it is only my experience; other people might know better and/or worse.

• Curb cuts. The city is supposed to be finished by 2008 with the curb cut programme (lawsuit terms). But they so aren't going to be done. In my neighborhood, there is often only one cut per block, and many blocks have non-regulation cuts. Some don't have cuts; they've heaped some tarmac up to the pavement .... The New York Times claims (in an inaccessible subscribers only piece) that in the greater New York area (the five boroughs), 97,664 cuts have been completed, but it doesn't say how many more they have to do. Manhattan alone has 20,000; it is one of the smaller boroughs at 22.7 square miles.

• Taxis. Of the city's 13,000 yellow cabs, only 81 are wheelchair-accessible. And there's no Braille signage or anything else useful. Thanks, DNNYC (Disabilities Network of NYC). NYC doesn't have the system where you telephone for a taxi, you have to hail a cab on the street. You can try to hail a cab, but they don't always stop. Too much hassle -- I ask someone else to do it for me and then sneak in or I wait until the light turns red and muscle in right in front of the driver and argue. Some drivers will stop for you, but won't get out to put the chair in the boot if it's raining, their backs hurt, they have junk in the trunk, or if they are bloody-minded. Powerchair/scooter user? Tough luck.

Many of the drivers of accessible cabs moonlight; they will hand out cards with their phone numbers. You can call about an hour in advance, but they aren't reliable. The issue has been brought to the mayor's attention, but .... well. Not yet. Livery vehicles (you can order these by phone) are accessible if you can transfer and if you can pay (they are more expensive). Yay, London (for the moment)!

• Buses. The buses are accessible, unless there are more than 2 wheelies. They often don't have good service in the parts of town where PWD live -- not that there are designated parts, it's more a question of less expensive neighborhoods and public housing -- and you often have to take more than two buses per trip. There are occasionally flare ups about disabled people being too slow for express buses.

OMG. Disability activists have spent years of their lives trying to educate drivers about where it is safe to ask a wheelchair user to disembark. You can't just plunk down the ramp anywhere. The bus driver on Saturday was not going to break any rules. We were stuck in traffic. He let everyone off the bus, but me and my friends. It wasn't a legitimate stop so he was not going to let me off. I cajoled. Nothing. I explained that I could pop off the bus side easily -- even more easily if he was going to let the kneeling part of the bus kneel. No such bloody luck. I argued. I decided just to go for it; he grabbed me. We were stuck on that bus for 30 **** minutes.

• Subway. Approx 24 of approximately 450 stations are accessible (but not clear by what standard). That rises to 75 if you count the commuter rail. Mostly, this means there's the odd sign in Braille, people yell over PA systems, and there's an elevator. Practically, however, this still doesn't take care of the gap, the non-functioning, pee-filled elevators, the lack of information about the elevators (you're supposed to be able to call, but getting someone to give you accurate info/answer the phone is a laugh and the website isn't uptodate). There's the gap, the moving platforms, the raised gap. .... (people are regularly injured from this on the Long Island Railroad). The narrow walkways from parts of the platforms -- so narrow that you have less than a foot of clearance between the wall and the edge.

Have I told you the one about the Starbucks cup? https://cripwheels.blogspot.com/2006/05/truly.html

• Places. Big stores are generally accessible. Boutiquey places are all too often not. Chain restaurants are generally accessible; far too many little places are not. Big supermarkets are; little corner stores are not. This weekend, so far, we have been to two inaccessible restaurants, one inaccessible coffee house, one partially accessible theater, one wholly inaccessible theater (I didn't go along) ... you get the picture.

I love the city, nonetheless. I know that in winter, the level of frustration rises as they plough the cuts under. I know it can be bitterly hot and cold. That people can be really rude (they can also be incredibly kind). I'd live here all the time, but Wizard is a West Coast type and West Coast is based on, well, the West Coast. I do think, however, that being under the kind of long term stress that not being able to do anything easily causes would exhaust me. I notice that disabled people here are very protective of their time, efforts, and energy. And I see why. This is not an easy place to live. And it is the only place I have ever passionately wanted to live. I will be back in New York in just over a week. I'm counting the moments.

• Visit the citified Wheelchair Dancer

Mental Health Care Progress Made

  • Posted by Bipolar Works
  • 3 Sep 07, 06:02 PM

I thought it pertinent to comment on this article on the BBC website.

Personally, I would agree with many of the findings, but many of my bipolar contacts are reporting a very different picture.

“Relationships between psychiatrists and their patients appear to be improving”

For me, the last two psychiatrists I have had have actually been human. Perhaps the fact that they are both female has had something to do with this. But both of them have been willing to answer questions I have asked about my treatment and have been participatory in their approach. I have not had to repeat myself several times in order to get the message across or to request a change of medication.

What I also value is continuity of care. I had one psychiatrist for 5 years and I have just changed to another one. However, I am aware that this is still the exception rather than the rule and my bipolar contacts tell me horror stories of never seeing the same psychiatrist twice or only ever seeing a junior doctor who prescribes antidepressants for bipolar disorder (this could send you manic).

“More people with complex mental health problems know who their care co-ordinator is and are being offered copies of their care plan”

I have a detailed copy of my Care Plan which was written jointly by myself and my care co-ordinator. This is regularly updated as necessary.

The last three care co-ordinators (Community Psychiatric Nurses or Occupational Therapists) that I have been allocated have been excellent and have really known their stuff. I have benefited from the “team” approach that exists in that they have been able to report back to the psychiatrist on my progress and get minor changes of medication authorised or resolve other administrative matters quickly.

“Half of patients still have no access to telephone-based out-of-hours crisis care”

This is completely unacceptable as many episodes of illness could be prevented if telephone consultations were available. From personal experience, if I am able to phone the care co-ordinator that knows me for an assessment and have access to medication within the first few hours of recognising a potential problem, then I can prevent an episode of illness. Allow the illness to fester e.g. over a weekend and it can spiral out of control.

I have a small amount of extra medication for emergencies like this, but many GPs will not prescribe these lifesavers. Why? I don’t know. It’s not as if they can be accused of over prescribing and all patients have enough routine medication to overdose if they wanted to.

Sometimes, an individual is just too sick to go to Accident and Emergency or visit the Out of Hours GP and wait to see a strange doctor. It has never happened to me, but I certainly wouldn’t want to see a stranger when ill in case they misinterpreted my natural personality for symptoms and tried to Section me. It is far better for your own GP to see you as they know you and don't get paid a fee to Section you (unlike the on-call GP).

What do you think? What is your experience of community mental health care?

• Visit Bipolar Works
Advice and support for combating discrimination at work for people with bipolar disorder and other mental health conditions

Too much information?

  • Posted by The Goldfish
  • 3 Sep 07, 04:28 PM

(A title not in any way meant as a comment on Jemma's most recent blog entry!)

In the early years of my illness, I was desperate for others to understand my condition, what it was and the impact it had on my life. I was involved in charitable organisations associated with my condition and supported their various Awareness Campaigns in the hope that, with time, I wouldn't have to explain myself; I would just have to utter the name of my condition and everyone would know what that entailed.

This was somewhat naive. Public campaigns can be very effective at raising money, raising the profile of a condition, decreasing stigma and nudging people with undiagnosed symptoms into having them checked out. What they can't do is educate people about all the different conditions and impairments we have.

Why not? Too much information. There are people who chose to spend five years taking a medical degree and even they get in a muddle. Other people are never going to be terribly invested in this stuff, so they pick up bits and pieces from media stories and conversations. Internationally, this September is Pain Awareness Month (US), Sickle Cell Disease Awareness Month (US), Arthritis Awareness Month (Canada), Muscular Dystrophy Month (Canada) and the "Awareness Month" of various forms of cancer. Also in September, they'll be Migraine Awareness Week (UK), National Eczema Week (UK), National Asthma Week (Austrailia) International Ataxia Awareness Day and World Alzheimer's Day. There are probably many similar events my brief Google search failed to discover as well.

Like I say, these public campaigns have their vital uses, but I would suggest that their benefits to individuals with any of these conditions are generally indirect. And when it comes to what facts filter through to the public, incomplete information is often far worse for us than complete ignorance.

People who learn of my medical label are generally confused as to the difference between this condition and other conditions which are a bit like it, sound a bit like it or are represented by similar initials. Usually, they confuse it with something someone famous has got. "Is that what Stephen Hawking has?" is a common inexplicable response (it's nothing like).

Yet even if they do know what I'm talking about, they have often read an article about someone like me and imagine they know exactly what symptoms and limitations I have, what medication I will be on and how I need to manage my condition. Sometimes this results in tremendous sympathy since "The bloke like you on the telly had a terrible life!". Otherwise, the differences between myself and the bloke on the telly can cause confusion, resulting in such diverse comments as

"You can’t have that. A person with that doesn't need a wheelchair."

and

"You can’t have that. If you really had that, you wouldn't be able to do half the things you are able to do."

Okay, so such comments come from mouths attached to minds far beyond the reach of education, but there are undoubtedly others who are confused by the seeming contradictory messages they have received. Of course, they're not contradictory messages at all; almost all chronic conditions have mild, moderate and severe manifestations and no two people are sick in exactly the same way with exactly the same symptoms and limitations. But that's way too subtle a message to get across when you're trying to teach someone about something that they're not particularly interested in.

Elizabeth recently wrote a super blog post about all the questions she was curious to ask about other people's impairments, the sort of things that occur to all of us from time to time. Absolutely no objections to this; it's not that I think we should keep this stuff to ourselves or that the details of our impairments should be taboo. However, one thing she did say:

The sad truth is that until people have some clearer understanding of the different conditions and disabilities, they will continue to treat us all the same: "The disabled" (also known as "those who really dislike being called disabled").
I would argue that the level of understanding required - as well as the understanding that a significant minority of people simply don't get a nice neat label despite having significant impairment - is simply impossible to obtain. What we need is something much simpler.

What we need, to get people to treat us like individual, is not a clearer public understanding of medical information, but an acknowledgment of the total irrelevance of medical information in our social interactions. We need to be able to state our limitations and have those limitations respected, regardless of whether or not their precise causes can be easily understood. I wonder whether such a simple message could ever be got across?

• Visit Diary of a Goldfish

"How to **** in the Woods"

  • Posted by Jemma Brown
  • 3 Sep 07, 08:54 AM

Regular ouch readers will remember, well might remember, Elizabeth’s recent blog entry about the nitty gritty of disability, the things that ‘you just don’t talk about’ or ‘become normal’, well basically I have decided to talk about one of them but first a bit of an explanation.

In my spare time, when I’m not being a full time student, I am a guide leader but also and more relevantly I am currently doing silver Duke of Edinburgh. (D of E)

This is an interesting but not unheard of feat for a crip like me, it presents several key challenges. I have issues with navigating using the landscape because “I can’t see the radio tower!” and don’t get me started about trying to do bearings using a compass (I think I might have come up with a clever solution to this particular issue), for anyone that doesn’t no bearings are about numbers and angles. Then theirs the interesting thing that I can read a map by the colours on it but can’t see the gridlines or any of the words, and there’s the issue that I’m likely to misinterpret a blue footprint for a car park.

Then there’s a whole new set of issues caused by my weird biomechanics, primarily being that my balance is appalling and my ankles quite often turn and twist without me even noticing. In other words I fall over quite often, then add things like potholes, tree branches, thorns and barbed wire and by the end of the day I will probably require some form of first aid. The worst thing about it is most defiantly hills and ridges. Going up hill is an issue because my stamina is really bad because my legs are weak. Then when I’m descending my balance is at its worst so this is when I’m most likely to fall over. Going down hill is something I’m rubbish at, at the best of times and do anything to avoid but with a 60 litre rucksack on my back, well at least I will have a soft/ish landing. Then theirs the walking along a hill (not up or down). That’s quite frankly just impossible my ankles end up turning so far out in order to keep me upright I walk at a snails pace, and someone farting near me would probably lead to me falling over.

But anyway back to the nitty gritty, there comes the occasion on D of E when one needs to pee. On a walk or ‘wild camp’ there is no toilet, witch (without sounding sexist) is less of a problem for the male members in the group, but it brings about a whole new lot of challenges for the crip.

The first issue is one of privacy, how do I find a ‘good place’ and then if I think I have, how do I no that I cant be seen, ok I cant see anyone around but does that mean they can’t see me?

Then there’s the next (really nitty gritty) question of how? Squatting isn’t exactly the easiest manoeuvres for me with my odd bones at the best of times but with trousers round ankles on rough muddy ground the consequences don’t bare thinking about! So one has to think what other methods are there? I did at one point search the internet. The title of this blog entry is the (slightly censored) title of a book, called if you hadn’t already gathered How to **** in the Woods (warning: title contains adult language) - I’m told it’s a good read but I haven’t read it (although I may have found some digital extracts) so I can’t really judge.

I discovered several ‘ideas’ like sitting on the floor or a tree stump, but they don’t sound particularly useful because a) splinters (ouch!) b) mud and c) as of the squatting idea one could end up in an awful mess.

See right after the fear of being seen, comes the next fear, the fear of making a mess and getting pee on ones trousers/boots/everywhere and then having to walk around for the rest of the day and in the car/bus/ferry/train stinking of pee.

Then there’s the issue of catching up with the group, I’m not the fastest of walkers or the seediest so trying to catch up with the rest of them could be problematic in itself. At the same time getting them to wait the other side of a bush for me to finish could be really embarrassing.

So anyway I thought I would share some nitty gritty disability stuff with you and hopefully make you cringe. If I haven’t already done that then the following might just help.

In order to cut my toenails without losing digits or even possibly limbs I have to be a complete contortionist and bring my foot up to my face, and then still hope for the best.

My mum (who is a LOT blinder than me) has to decipher weather dropped socks, underpants, knickers or bras are clean or dirty by sniffing them. Also when it comes to sorting the washing by its colours she has to bring it right up to her face to see the colour, now isn’t that a lovely thought.

Now to something witch animal lovers will be particularly disturbed by I’m a biology student and one of my favourite practical's of last year was the dissection of a sheep’s heart, but I had two problems with this practical witch are both pretty funny looking back. The first one is in no way linked to my disability but the gloves did not fit my hands, in fact they where so very small my hands couldn’t even begin to fit in them, this meant I actually had to touch the piece of dead sheep. The gloves not fitting apart from being gross was actually an advantage because it allowed me to feel my way around the heart a lot easier than it would have been with gloves on, but there was one more draw back to this. In order to actually see that I was in fact cutting the heart with the scalpel and not myself I had to get my face rather close to the heart, too close. I made the huge mistake whilst making my first incision of breathing in through my nose it was the most disgusting smell ever (saying that it was no where near as bad as the smell of E-coli broth). What’s worse is that this experiment was just before lunch, despite washing my hands millions of times and them being spotlessly clean I couldn’t get the smell off them it was very subtle but still gross.

I could go one with more horror stories of things that I have just had to get around and get on with whilst grinning and bearing it, but I think I have probably made you cringe enough.

Oh and by the way as it happened last year (quite possibly driven by fear) I did not need to pee whilst on duke of Edinburgh.

• Visit Diary of a Monkey

Digital Life

  • Posted by Mark
  • 2 Sep 07, 07:33 PM

Since a rather young age, I've had a close, personal relationship with my computer. Several computers, in fact: from an Apple IIe I had back in the mid-eighties to my current homebrewed system. My ongoing love affair with computers has a lot to do with the simple fact that it's the one activity I can engage in with complete independence. When I'm using the computer, I don't need anyone's assistance or intervention. Thanks to a couple pieces of assistive technology that allow me to move the mouse cursor with my head and emulate a mouse click with a slight twitch of my thumb, I can use a computer with a good deal of proficiency. Without this technology, I'm not sure how I would have completed school or held down a job.

Of course, I also use my computer for more mundane tasks like e-mail, managing my overwhelmingly large music collection, and writing blog posts like this one. The only thing I can't do is play certain games that require more head-eye coordination than I can muster (I'm looking at you, Bioshock), but that's probably for the best. Easy access to games might cause me to give up my title of "Sad Geek" in exchange for "Truly Pathetic Geek". Besides, in another ten years I'll probably be able to get one of those neural implants that will let me control the computer with pure thought. At which time I'll be able to quit this lawyer gig and make a living on the professional videogaming circuit.

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Lost and Gained

  • Posted by Bipolar Works
  • 2 Sep 07, 12:14 PM

In life, I believe that whenever something is lost there is always something to be gained from the experience.

What have you lost and gained from your experience of disability?

These are the issues that I have grappled over the years whilst I have watched my peers graduate with degrees, travel the world and move all over the country to sustain their careers and relationships.

What I have lost:

1. Restrictions on my freedom to travel anywhere I wish without paying expensive travel insurance fees or worrying about getting ill
2. A life insurance policy without suicide exclusions
3. The right to do jury service
4. The right to drive for short periods of time
5. A higher education with my peers
6. Several jobs (through sickness absence or discrimination)
7. My dignity and privacy (in the psychiatric ward). It could have been much worse. If I had been Sectioned under the Mental Health Act, I could have lost my right to freedom and to vote.
8. Several friends (but were they really friends at all?)

What I have gained:

1. Several close friends
2. Family support
3. Several new jobs
4. Many skills in contrasting areas
5. A wide diversity of work experience
6. The ability to survive an episode of severe illness and bounce right back again (isn’t that severe human endurance over and above what others experience?)
7. An understanding of the fragility of the human condition
8. An understanding what it is like to be at the mercy of the mental health system

Would I change anything?

I can’t change the fact that I have bipolar disorder but I would change the way it has been medically treated and how I have been treated in society and at work because of it over the years.

In the last 15 years, I believe that many advances have been made in medication (with less severe side-effects), and treatment (Community Mental Health Team inter-disciplinary approach, Care Plan Approach, assertive outreach, self-management, talking therapies) but these are all hampered by severe under resourcing, particularly with regard to the availability of psycho-social therapy.

It is also vitally important that service users are recognised as active stakeholders in this process and allowed to fully participate and have a say in their care. Otherwise, it won't work.

Unless the Government recognise that quality resources are the answer, rather than the draconian legislation of the Mental Health Act 2007, then we are going to revert back to the dark ages of 20 years ago in terms of humane treatment.

The Disability Discrimination Act has already made a significant difference to my life. I cannot comprehend how I would have coped without it. I would tighten up on disability legislation even further to make it even more difficult for companies to discriminate against people with disabilities.

What have you lost or gained as a result of your disability? Would you change anything?

• Visit Bipolar Works
Advice and support for combating discrimination at work for people with bipolar disorder and other mental health conditions

The Normal Normals

  • Posted by Dave Hingsburger
  • 1 Sep 07, 12:08 PM

"You seem to treat disability as if it's so ... normal." Thus begins an email to me from a parent of a child with Down Syndrome. I appreciate what she is saying in the email, it's quite complimentary, but this statement really stands out for me. I know we all chafe at the word normal when in fact most of us deeply fear that we are entirely normal. I remember going to a doctor with symptoms and being told that it was 'normal' for men 'of my age' to have these symptoms. Going in feeling different, coming out feeling mundane - didn't like it. Even so, the idea of disability as a normal state of being seems odd to many.

Not to me.

I figure if it happens in nature, it's normal. It's the way it's supposed to be. I happened. I'm normal. Big deal.

Yesterday I sat chatting with a fellow who had recently quit his job as a teacher. He talked about teaching disabled kids in school. Kids kept separate from others, from the 'normal' population. I was astounded at how easy it was to trim normal, to make it mean 'like me' rather than 'like us.' I wondered about those kids in the segregated class room. What were they learning from being there? Forget the curriculum. What where they learning from being behind a special door, in a special room? Were they learning that their humanity had been curtailled and they didn't belong. Weren't part of it all. Not wanted on the voyage?

The 'normals' who walked the hallways, glancing with unease at the door to the special room. Fearing and being titilated by the sheer smallness of the barrier between different and acceptable. Giving gentle thanks to a God that made them better, better, best. Wondering at the cruelty of a God who could make other, other, bad.

I don't fear the word 'normal' because I am it. What I fear is those who define the word in their head in a manner that excludes me. This isn't a problem with the word 'normal', this is a problem with bigotry and bias and prejudice. This is a problem with exclusion. With the idea of 'us' meaning 'not you'.

I wrote Mom back and told her that while having Down Syndrome was normal. It was also normal to exclude, to be cruel, so normal isn't necessarily what it's cracked up to be. It is the normal normals that one has to fear. I suggested that she needed to ensure that her child understood that he was made with the same care as everyone else. That his world was his world, that his humanity was all humanity, to not give up ground to bigots.

We've done that for too long.

It hasn't worked.

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