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Writer's Block (Coping with Depression)

Posted by Bipolar Works
31 Oct 07, 07:26 PM

Writer’s block doesn’t happen to me very often. Usually ideas are just bouncing off the ceiling and I can’t type them into my word-processing software or make my little rabbit paw mark on other people’s weblogs fast enough.

But just recently, I’ve been going through a low patch. Why? I don’t know. Sometimes, there is no rhyme or reason to it. I feel low, unconfident, and the words just won’t flow. I loose all interest in eating carrots and want to snuggle back under the straw in my rabbit hutch and not come out for a while.

Not good, when I’ve been commissioned to write a blog for the BBC and I want my writing ability to shine through!

So what can I do to break this depressive stupor and provide you avid readers with an insight into how I cope with my affliction?

Here’s some Bipolar Works top tips that I use for coping with depression:

1. Activity makes you feel better so do something even if it’s only a couple of jobs round the house or a trip out to the corner shop to get a paper or magazine.

2. Re-frame the problem – it’s not that bad, really. Write down all the positives about your situation and you may just find a solution.

3. Watch your favourite films (as long as they are not sad and make you cry or horror movies).

4. Listen to a selection of your favourite music.

5. Re-read your favourite inspiring book.

6. Arrange to go out with your friends (you will feel better once you are out of the house).

7. Have a relaxing bath (at least you will be clean and sweetly smelling).

8. There are various support networks on the Web to provide mutual support Depression Alliance offers an email support group called DAtalk and a penpal service and MDF the Bipolar Organisation offers an E-Community. Plenty of useful advice and support can be found there for people with depression and bipolar disorder.

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

Oska Bright on YouTube

Posted by Vaughan
31 Oct 07, 11:43 AM

Oska Bright, the film festival run by, and for, people with learning disabilities, took place earlier this month in Brighton, proving to be another outstanding success, with nearly 1,700 people attending over the course of two days. It's not over yet, either, because now Oska Bright is going on the road, beginning with a trip to Penzance in Cornwall during November, whilst in December Oska Bright will launch in Ireland with some screenings and a big party in Dublin. You can find out more about all upcoming Oska Bright activities on their website.

In the meantime, however, Oska Bright has joined the YouTube generation, displaying some of the festival's award-winning films on the popular video-sharing site. Click here to see the whole selection, whilst embedded below is one that caught the eye of the Ouch team. It's called I Saw a Girl, and it was made by Arty Party. It was the winner of the Best Overall Film category at the 2007 festival.

Watch 'I Saw a Girl' on YouTube

Here's looking forward to Oska Bright 2008, then ...

Cartoonist draws a blank: your help needed

Posted by Lady Bracknell's Editor
29 Oct 07, 07:12 PM

The cartoons of Crippen (aka Dave Lupton) were first brought to my attention - and that of the hardy souls who wade faithfully through my blog - back in February. Since which time, I seem to have managed to get myself onto Dave's mailing list. Although I can’t quite remember how. And, let me tell you, Dave's mailing list can be a distinctly perilous place to find oneself...

Ahem. Anyway. Over on what – rather disappointingly – isn’t called Crippen.com, Dave is showcasing some cartoons he’s drawn about the plug having been pulled on the dear ol’ Disability Rights Commission.

Cartoon by Crippen shows two fierce looking dogs wearing round name badges on their collar saying 'Employer' and 'Service Providers'. They are sitting over a newspaper showing the headline 'DRC closed down'. Confronting them is a small puppy dog wearing a name badge of 'Disabled People'. The two fierce dogs are saying 'Phew - for the moment there I thought that it really WAS going to be a fair fight!' (Cartoon used by permission of Dave Lupton)

In his latest email, Dave has asked the people on his mailing list

“for any comments or feedback about this particular issue, also any ideas that you might have regarding the closure and what it means for Disabled people.”

And why would you want to go to the bother of articulating your thoughts on this subject in the handy comments facility for this blog entry? Hmm? I’ll tell you why.

If Dave gets sufficient feedback, he’ll set up a specific focus page for this subject on his website and that page will then be available as a resource for the people and organisations affected by the closure of the DRC. And that means that he’ll allow the likes of you and me to use his cartoons in any of our own publications free, gratis and for nothing! (As long as we don’t change anything in them and we do include a link back to the mother ship. Sorry, did I say “ship”? Site. Dave’s website. Of course. Glad we’ve got that straightened out.) He’ll even email you a clean copy of your chosen ‘toon, should you need one.

And you can’t say fairer than that. Particularly given that non-disabled individuals and organisations have to pay a £25 license fee for the privilege of using Dave’s work. Money which, you’ll be pleased – and possibly just a trifle smug – to hear, is used by Dave to support the work he does free for thee and me. Good, no?

So, if you have any strongly-held opinions about the impact you think the closure of the DRC is likely to have on disabled people in the UK, put them into the comments section. Dave will be looking out for them. Who knows? He might even reply… If he doesn’t, you could always record your displeasure at having been cruelly spurned over at his new blog.

• Visit The Perorations of Lady Bracknell

Universal university

Posted by Jemma Brown
29 Oct 07, 11:31 AM

I went to my first university open day on Saturday… it wasn’t good.

They had the view that once they had one student with a visual impairment everyone else would be the same as that one person. The truth is shocking so prepare yourself; not all visually impaired students have the same needs and they are not the same in terms of personality. Hey not all disabled people have the same views or opinions or needs.

Truth be told the open day left me feeling like some form of an alien sausage.

The manager of the accommodation was very scared by me arriving and asking him questions about accommodation for students with disability’s, so scared he wouldn’t even talk to me he directed me to his colleague straight away. Yes to that narrow minded manager I was the scariest alien he had ever seen and worse of all I actually spoke to him.

I think he might need therapy to recover from the trauma of meeting a disabled person.

I’ve decided not to apply for the university in question, it wasn’t just because of the disability issues, and there were other issues, the building being literally held together by duck tape being one of them!

• Visit Diary of a Monkey

All intimacy, no dignity.

Posted by Elizabeth McClung
29 Oct 07, 06:12 AM

I get more intimate contact, clothing removal and finger fumbling weekly than my entire teenage near-sex encounters combined. But will they remember my name in the morning? Probably not.

The reality of being judged a dependant disabled individual is that, by necessity, you will have a steady stream of home care workers, hospital staff, respite workers, social workers, case workers, GP’s, disability program volunteers and ‘other interested parties.’ They will touch you, assist you and generally assume that they own your medical history, including those parts my grandmother referred to as “Things women just don’t talk about.”

Tell that to the respite facility director who bellowed across the common room at me, “Are you incontinent!?” During my respite stay, a sheet with my medical conditions was posted on the communal board. I had male caregivers who couldn’t understand why I wanted to remove my own panties/knickers while on the toilet.

“It’s no big deal!” they told me, and I could see, like those assuming I will give full medical details on demand, that a guy exposing my vaginal area against my will was just “a duty”, no big deal TO THEM. After argument he consented to retreat to where he could only HEAR me pee, instead of watching me.

That moment I vowed that if I get too incapacitated to drop my panties/knickers I am either going commando or ordering a stack of tear-away burlesque style stripper panties. Want to lower my panties? I don’t think so......RIPPPP!

My respite home shared facilities with a hospital and the health organization in charge of my care. The day I rolled across the front common lobby and a person unattached to the respite knew my name, my interests and why I was there, I realized that these 'interested parties' had ceased seeing my information as confidential and thus stopped seeing me as equal in respect to themselves.

I was the “client”, I wasn’t a human, I was a “disabled” and they had the RIGHT to my information and my person. When a home care worker is in a hurry, I’m not asked, “Is now a good time to pull off your top and bra and change them?” They just start.

So I started asking questions back. “What have you done to integrate into the community?” a rec therapist asked me.

“What have you done to improve your life this week?” I asked back. There was a shocked look and silence followed by, “That’s confidential information.” Oh yes. That old “confidential information” (aka “Who the heck are you to treat me as I treat you?”).

I participated in disabled sailing this summer, which, of course, required a multi-page medical condition and medication list. I understand they need the information for my safety, but the program was run by a 19 year old and my “volunteer companion” was sixteen. What protection do I have to keep him from spreading my medical history around? Threaten to call his parents?

I wanted to go on a disability recreation program in Victoria called Power To Be but I refused to answer the medical questionnaire. Those answers are things you get to know about me only after we have had a LOT of sex. Below are a few of the 59 medical questions requiring detailed explanation of ALL past and present occurrences. Then there were seven additional question sections:

Have you ever had any of these conditions?
PMS
Bladder Infection (UTI)
Anorexia
Bulemia
Frostbite
Bedwetting
Heartburn
Muscle Cramps
Do you drink coffee/tea? If yes, how much?
Have you been in counseling with a psychologist, psychiatrist or psychotherapist within the last year?
Reason for treatment?

I only wanted to do assisted kayaking. Are those questions most people have to answer in order to go kayaking? Would you feel comfortable having a teen volunteer knowing that you are in counseling for rape and used to be anorexic just to play assistive golf?

And why don’t they remember me in the morning? I regularly have caregivers showing up at my apartment when they are scheduled two blocks away for the ‘other’ Elizabeth, the senior in her 80’s. Hey, I have a better body; I get my legs waxed; I wear corsets and PVC bikinis! And my caregivers can’t remember the difference?

For many of the younger workers, they cannot conceive that they could ever be or become us; disabled. Last week a twenty-something caregiver told me she works with people with Cerebral Palsy. “Which kind?” I asked.

She looked baffled; “No, no Cerebral Palsy,” she said correcting me, “They are all brain damaged.”

I tried to help her understand that people with CP were not “brain damaged” in the way she meant. No, no, she continued, all people with CP were vegetative. “People with Cerebral Palsy are brain damaged; they can’t speak or anything!” She finished.

I showed her Laurence Clark’s BBC piece Sweet charity; he speaks, he is ironic and clever. She got a confused and upset look on her face while I explained there were many types of CP. She suddenly blurted, “I can’t talk about my other clients...it...it’s confidential!”

Ahhhhh! Telling people that those with Cerebral Palsy are unspeaking, vegetative, brain-damaged individuals is okay because, what, they aren’t like you? But confronted by Laurence Clark, there is a burning need for confidentiality? What’s the big secret? That people with CP can talk, write blogs and have lives eerily similar to yours? This same caregiver helps me eat, drink, dress, bath and has compete access to my caregiver medical records. Yet “for confidentiality” I am not allowed to even learn her last name.

Now from what I remember of playing “doctor” as a child, there was a mutual peeking at privates, not just an obligation on the girl (or disabled girl’s) part to drop her undies on command.

I mean, if you are helping me to the bathroom, shouldn’t I have a record of your STD’s? Or a male care worker’s prevalence to premature.....sex problems. If you know my therapy history, how about I see yours? Since my care worker is PAID to make sure I keep taking my anti-depressant, shouldn’t I know if they are feeling a bit suicidal, a bit hyper, a bit addicted?

Or here’s a better idea; start treating my information, my body and my privacy with the respect and dignity you want yourself.

If that doesn’t work there will be a sheet at the door for caregivers to fill in before entering: “Have you had the following conditions, please explain instances and in detail: PMS, UTI’s, eating disorders, bedwetting…..”

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Equal Protection

Posted by Mark
23 Oct 07, 01:17 AM

National Public Radio did a story today on the ADA Restoration Act. The intent of the bill is to undo some of the damage done to the Americans with Disabilities Act by the federal courts, particularly the U.S. Supreme Court. As the article explains, courts have narrowed the definition of "disability", excluding many people from the law's protection because they have impairments that can be ameliorated with the help of drugs or medical devices. To borrow the article's example, a person with diabetes is not considered disabled if an insulin pump alleviates the symptoms of the impairment.

This kind of strained reasoning is indicative of society's misguided impulse to assess disability on the basis of, dare I say, freakishness. People in wheelchairs, people who are blind or deaf, people who talk to the voices in their heads; their obvious otherness makes it so easy for society to label these people as disabled. But when the distinction isn't as apparent, as is the case with most hidden disabilities, we become much more diffident. The legalistic notion that this person or that person isn't "disabled enough" is not so different from whistling while passing the graveyard; it allows us to ignore some uncomfortable truths. It allows us to ignore the fact that many perfectly normal-looking people can have significant impairments that can dramatically affect one's life. It allows us to ignore the fact that the gulf between disability and so-called "normalcy" isn't as wide as we might imagine (or hope).

The notion that some disabilities can be made to simply go away is a fiction and almost childish in the wishfulness it conveys. Diabetes can be managed with drugs in the same way my condition can be managed with a wheelchair. But in both cases, the underlying impairments and their complicating factors remain. The person with diabetes just looks more able-bodied. And in this culture, looks are everything.

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DAISY

Posted by Jemma Brown
19 Oct 07, 08:21 PM

DASIY

Did you know that daisy’s are not only a little flower that we probably all have memories of making chains with in our youth but also a way for blind, partially sighted and learning disabled people to access books and other printed materials.

I have heard all about how great DAISY format books are but until yesterday I had never seen, or rather heard for my self. In my opinion this is quite possibly one of the greatest inventions ever to enable print disabled people to access books.

One of the reasons the DAISY format is so good is that it allows the user to navigate through the book by chapter, page or even subheading depending on the books structure, just like a fully sighted person would navigate a book. This is particularly useful if the book that is being read is non-fiction and you are looking for a specific piece of information.

Another really good function of the DAISY format is that it allows the user to place numbered bookmarks in to the text so you can go back to your favourite section again without spending ages fiddling around.

The DAISY play that my dad brought me is a very compact and recent model called the Victor reader WAVE and it is really good.

The only slight downside to all this is that I haven’t quite got enough money to join the RNIB’s talking book library but I will get some books eventually.

When I do have the money to join the library I will have over 32000 different books to read, this is great. Reading weather it be visual or audio is something I really enjoy and I have been trapped unable to access the book with excellent reviews that everyone is going on about, soon this won’t be a problem.

• Visit Diary of a Monkey

Too Positive?

Posted by lilwatchergirl
19 Oct 07, 12:21 PM

I think I may have persuaded my friends to feel too positive about disability.

This week I am in a STROP. I'm not happy. I am frustrated and grumpy, I keep losing my temper, and all I want to do is hide under the duvet for a very long time. The Girl has been running around hiding all the breakables in the house, as I have a tendency to THROW THINGS WHILE SHOUTING OBSCENITIES when I'm feeling like this. The source of all this is impairment-related, but it's not pain, fatigue or poor mental health that's set off this anger management problem - it's a diagnosis. Or, more specifically, the implications of said diagnosis.

It turns out - after about two years of trying to find out exactly what's wrong with me - that's it's a genetic disorder that I had suspected (but was still hoping I didn't have). I've been trying to persuade the doctors to look for something like this since my condition went haywire a couple of years ago. And long before that, my mother was taking a very small lilwatchergirl to every GP and consultant she could find, in the hope that they could tell her what was wrong with me. Her conversations with them, from what I'm told, went a bit like this...

Mother: She's clever and talkative, but she doesn't walk or even crawl yet, at two years old.
Doctor 1: You are neurotic and over-anxious. Go away.

Some months later...
Mother: She still can't walk or put weight on her feet. Something is wrong.
Doctor 2: She has some joint problems. It's nothing serious.
Mother: It seems to be quite serious.
Doctor 2: You are neurotic and over-anxious. Go away.

Some years later...
Mother: She can't write or use her hands properly.
Doctor 3: She'll be fine.
Mother: Her teachers are worried.
Doctor 3: You are neurotic and over-anxious. Go away.

Which makes it quite interesting that, over the past couple of years (and in occasional incidents at other times before that), my own conversations with doctors have turned out something like this...

Me: I am in serious pain. I have terrible, mind-numbing, bone-crushing fatigue. My mobility is deteriorating. There are signs that my heart isn't working as well as it should. I live in a constant state of 'brain fog' where confusion and forgetfulness make me seem completely stupid, even though I'm really not. I don't sleep properly. I get migraines and dizziness and I pass out. My joints aren't working. And lots of other things are wrong.
Doctor: Don't you have a history of mental health problems?
Me: Yes.
Doctor: You are neurotic and over-anxious. Go away.

It was only by sheer power of persistence - I'm very good at being irritating - that a GP finally agreed to send me to someone who specialises in the disorder that I suspected, thanks to my medical history, that I might have. And so it turns out that neglect from all these doctors, starting from the age of two and going on for twenty-seven years after that, has led to the pain, fatigue and mobility problems I'm having now, and more. I'm not a neurotic hypochondriac - all the 'random little symptoms' that have bothered me for years are related to something bigger, not to mention the much bigger ones that have developed recently. And yes, it should be a relief to find that out, and to know that there are possible directions of treatment, even if the prognosis isn't all that great. But I'm not relieved. I'm pissed off. Mostly at doctors whose cheery assumptions have left me in much more of a pickle than if I'd had treatment as a child. But also at life. Which sometimes just sucks.

I know that disability is not a tragedy: that impairments don't have to ruin our lives, and (of course) that it's very good that I don't have something more serious. But sometimes even Social Model thinking and having a positive, determined, rights-focused outlook don't help you feel better about the years of pain, mobility problems and other complications that you've just found out you're going to live with from now on. Nothing has changed - I'm in exactly the same situation I was in this time last week, when I thought I had a condition that wasn't necessarily permanent. But that doesn't change the fact that I feel really rubbish.

So you can see why I'm finding it a bit tricky that I am now having the opposite problem to the ones I used to have when communicating life and health issues to members of my (small, but beautifully weird) social circle. My adorable, well-meaning friends are too accepting, too open-minded, too keen to tell me how wonderful this all is. I should be pleased to hear them saying that it's good that I know what I'm dealing with now. They're not going off at the deep end because I might be a wheelchair user for the rest of my life, they're not too upset by seeing me in pain, they're not afraid of the 'illness' concept, and I do appreciate all that. They, like me, have adjusted to the idea that disability isn't the worst thing in the world, which is a great improvement on the attitude of the friends (when I was much younger) who ran away screaming when they found out I had mental health problems. But still, I'm frustrated that no one can see my frustration. I need a week (or six) to have a strop, cry, worry about the future, get stressed out with the present, and be really irritated about the past. Even if that reaction is completely out-of-proportion, or just downright silly.

So there.

Leaving Base: West Coast on Tour

Posted by Wheelchair Dancer
17 Oct 07, 04:41 AM

We're about to go on tour! OMG. So not ready. Final costume decisions just made yesterday, but I still have to see whether or not I can button my coat. And I have to buy a pushup bra (much pushing up needed). Still confused about whether I should be wearing green or black sox, too. OMG. Packing is next. Less said on that subject, the better.

I'm ready with the dancing. I hope I am ready with the body. I've done the wheelchair maintenance. I've got all the spares. Just need to switch my tyres. Red for blue. Or maybe not?

Travelling with West Coast is interesting: 8 wheelchairs (two per user) -- two of which are power. Then, there are multiple sets of legs. We occasionally travel with a sofa (seats three), some large picture frames, and 8 stilts (no, don't ask). Then, there's the batteries. Then, there's the regular luggage, topped up with costumes. And finally, the people. (Take that, Ryan Air! Or, rather, not. We probably wouldn't be allowed to board a Ryan flight. There's too many of us).

Passing through security is always amusing. The partner of one of us stands protectively over us, daring the TSA people to be jerks. "Can't she just ..." "No, she can't. Won't." We all have our different requirements; I have learned that the process goes easier if they slide instead of pat. This is, apparently, a major deviation from policy, and it always requires clearance from a "manager/supervisor." Grrr.

Boarding? Ha!

I'm not sure what to expect from the tour itself. We will be gone on and off from October to May; we leave on Saturday and are gone for almost a week. Literally, we fly out on Saturday, return Tuesday late, are home on Wednesday, drive out on Thursday (6 hours!!), and return Sunday. Wednesday is reserved for laundry, sleep, PT, and other wellness practices. When we arrive on Saturday, we have an hour or two to unload, then we are called to the theater for teching, rehearsing, more teching and .... Sunday, we perform, once I think. Other days, we perform more often. Here's a sample day:

9:00 am Dancers arrive in theater for Student Performance
10:00 – 10:45am Student performance in Theater #1
11:30 am - 12:30pm Student performance in Theater #2
1:30 - 3:00pm Master Class on stage
5:00pm Company Meet in hotel lobby and depart for airport.

I hope we all come back liking each other as much as when we leave.

Cognitive Behavioural Therapy and Bullying

Posted by Bipolar Works
16 Oct 07, 09:41 PM

I have experienced bullying on more than one occasion in my working life. I seem to be a natural target. Why? I don’t know. I seem to invoke a feeling of inadequacy in some people for some reason, and I’m not afraid to stand up to them either.

How difficult is it to detect bullying if you are bipolar? Well, it’s no more difficult than for anyone else, provided that you evaluate the evidence.

Yes, we may have occasional episodes of illness that can be severe and include paranoia and delusions, but the majority of the time the illness can go into remission, and be managed by medication and lifestyle so that we are just like anybody else (but with an underlying vulnerability that can be ruthlessly exploited by the bully).

And that’s where Cognitive Behavioural Therapy (CBT) techniques come in very useful in order to detect and manage bullying. CBT teaches you to look at the evidence for what is happening. Did she ignore me on purpose, or is she just having a bad day? Did she criticise my work unfairly, or was there some truth in the remark? Did she deliberately exclude me from the activity or was there a logical reason for doing so? Did she refuse me training or holidays for a good reason or was it just malicious?

I have found CBT an invaluable tool in recognising that bullying is happening so that I can survive and beat the bully. If you suspect that you are being bullied then it is very important to seek help from your GP, consultant or CPN, as they can write letters of support that you are suffering from anxiety or reactive depression as a result of the bullying (and not just a mental illness). This means that you will be covered by the Health and Safety at Work Act 1974 and they cannot claim that you were making it all up due to your bipolar disorder.

It is also important to log each incident (date, time, what happened and any witnesses) and gather the necessary evidence (emails, notes of telephone calls etc.) if you wish to take it further with your employer.

For further information about how to survive the bully visit the Bully Online website.

Have you ever been bullied at work because of your disability? How did you deal with it and what was the outcome?

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

Gimme Shelter

Posted by Mark
16 Oct 07, 03:11 AM

One of the things I like best about living in downtown Minneapolis is the fact that my building is connected to the skyway system. The skyway system is a series of elevated, enclosed walkways that connect most of the downtown neighborhood. I can walk from home to the cinema, shopping centers, and several restaurants without having to ever venture outside. This convenience has staved off cabin fever on many wintry days when the outside weather is less than welcoming to someone using a wheelchair. Even nowadays, when the seasons don't behave quite like they used to, Minnesota's climate is still more than capable of producing foot-high snowdrifts and temperatures that can freeze the tears in your eyes. If not for my job, which is in the other Twin City of St. Paul, I could probably go a week or more without going outside. It's like I'm living in the precursor of one of those domed cities that Isaac Asimov envisioned in his novels.

No city is perfectly accessible, but Minneapolis is better than most. The skyways are just one more reason I feel lucky to live here.

• Visit The 19th Floor

Doctors

Posted by Jemma Brown
15 Oct 07, 10:54 PM

Well ouchers you may remember that I posted a while back even though I had a horrible cold and was battering to type through the snot. Well said cold has magically turned into a chest infection, lovely stuff.

This lead to me travailing down to my doctor’s surgery and seeing a doctor that I don’t see very often.

It starts normally, she forgets to come and collect me but a nice receptionist takes me to the right place. (For what happens when the system for helping people with disabilities does not work click here) she listens to my chest. She said it didn’t sound too bad, and that I’m probably struggling to get rid of the infection because I’m inactive.

Me, inactive?

I’m actually quite a busy person; I spread my time between collage, duke of Edinburgh, goalball, guiding, British sign language and some were fitting a bit of a social life in to the mix. I’m one of the busiest people I no.

What got to me more than the fact I was labelled as inactive was the reasoning behind it. She saw me walk in with my long cane sit down and then based her diagnosis on the fact that my disability means that I must spend all day every day sitting at home in front of the TV basket weaving (I really don’t do craft) or something.

A preconception without knowing anything about me as a person, a preconception because of my disability.

• Visit Diary of a Monkey

"I'm dying thanks, and you?"

Posted by Elizabeth McClung
14 Oct 07, 07:42 PM

Apparently I’m dying of a rare neuro disorder. That’s what the (provisional) diagnosis says. But if I say that in response to friends asking about my medical condition; “How are you? “They found anything yet?” then everyone gets really quiet (and if you don’t say anything they blurt “You look great!” or “I’m sure they’ll find a cure!”). We don’t talk about dying, we don’t know how. In our culture people with terminal conditions are supposed to quietly slip out of sight or take world cruises or go to Disneyland. Except I need to get the laundry done, don’t you?

A lot of people with disabilities have an attached “shortened lifespan clause” (people with your disability live X years less than ‘average’); come on, I know you’ve googled it. Even conditions thought completely non-terminal a few years ago like CFS/M.E. now (in a few cases) have recorded death progressions.

How to deal with it? I dunno, this is my first terminal condition (isn’t it for everyone?). Denial mode would be great if I didn’t spend several days a week hunting for a GP who will treat me (I was dumped when my (provisional) diagnosis came in). Doctors literally get to the paragraph in the specialist report, stop reading, stop talking and eventually say, “I’ve never heard of this” with this edgy wide eyed look.

I’ve gotten to the point of trying to cheer them up, “Hey, it’s okay, there’s no treatment! I’m an easy patient.”

Two days ago, another GP, talking possible care after he read my (provisional) diagnosis suddenly said, “I wouldn’t feel comfortable touching you.”

Time stopped. O…kay.

Dude, I don’t have leprosy (not yet!).

But this afternoon I was too busy scamming free girl-scout mint cookies to be dying. When I first got my diagnosis Sara gave me a pep talk and I think it was about not letting life revolve around that Sword of Damocles over your head. So the point is, “I’m not dying today!” Well, usually I say that at night, when pain is worst and my home care person is moving me to position 26 in hopes I can relax enough from the pain to sleep. I say to myself, “I’m not dying tonight.”

H., my home care worker keeps repositioning me and says “I hope so because I’m not explaining that to the supervisor.” Of course 40 minutes of pain later and I am asking H. to find “A ball-peen hammer” so she can hit me on the head to sleep because “that’s what works in cartoons.” H. is a very patient woman.

Dying becomes a lumbering thing which hangs about the house. The probable progression becomes just a part of life, like buying snow tires and upgrading the internet connection.

Linda is helping me shower and we are planning our trips.

Me: “So if incontinence occurs two years after symptom onset; what kind of trips could we do then?”

Linda: “Car trips?”

Me: “I wonder if changing how I drink during the day would help with the incontinence?”

Linda: “Oh, talking about uncontrollable body fluids, my flow started today.”

Me: (Laughing.) “That’s your transition? Incontinence to periods? You are getting WAY too used to medical talk.”

I find I have two lives; the life I plan and the life I live. And sometimes they aren’t so far apart. Finally, after three weeks, I was strong enough to return to boxing Thursday.

Coach Ian calls out; “Sparring! Liz and T. you’re together, everyone else choose a partner.”

T. is over six feet and big; bouncer sized big. My first thought is, “What did I do to piss off Ian?”

We tap gloves. T. is giving me these weak slow-mo punches. The kind big tough guys give to girls; girls in wheelchairs.

“Don’t hold back,” I tell T, my gloves defending my face, “you need to give me your best.”

T. continues, not even in a defensive crouch, throwing painfully slow punches that don’t even touch my gloves. I feign to his head and tap his stomach with a shovel hook. I am getting seriously irked. “I was an athlete before the chair,” I tell him, “and I am about to start.”

He stares at me, shuffles his feet a bit and throws another weak ass punch. Over the next fifteen seconds I tap him in the head and face three times. I finish with a left shoulder block to hide my right hand roundhouse to his ear. T. wakes up. He starts finishing his punches. I cover him with a flurry of hooks working both sides of his body until he backs away then comes at me, all 200+ pounds, raining me with punches. Linda said my chair teetered on back wheels, almost flipping over backwards more than once from his attacks.

Now this is fun.

T. gets in some licks of his own; he stops dropping his head and his right hand and by the second round, he is batting my jabs away and coming in for easy head taps. We had a good time.

Afterward Ian came up and made a comment along the lines of “Do you remember the ‘non-contact’ part of this class?”

“He just kept running into where my glove was.”

“Yes Liz, I notice they all happen to do that.”

People say I’m “resilient.” That’s a word which makes me think of an oak tree. I’m no oak tree. I worry people think I am cruising through all this physical/emotional crap. The truth is that I shatter with monotonous frequency; those hit-the-wall crying jags when all you are looking for is that metaphorical red “exit” sign. I like to think of myself as the dandelion. I’m not particularly strong or have a big defense, and even a little event or an unthinking person can squash me flat. But one thing any lawn owner knows; dandelions always come back (whether wanted or not).

“In the fall, I am going to go back to indoor rock climbing.” I tell Linda.

“Sweetie,” she says in a way which means I am not going to like what she is going to say, “you can’t do rock climbing any more.”

“Oh.” I think about it for a moment, “Sure?”

“Your arms can’t hold your body weight anymore.” She gives me the “I know you don’t want to hear this but you need to” look.

“Oh. Okay.” I think to myself that she’s probably right but maybe I should sneak away one afternoon just to see.

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So What Do YOU Do?

Posted by Dave Hingsburger
12 Oct 07, 11:23 AM

For years I've avoided the question, "What do you do for a living?" The fact is that I was a therapist working with sex offenders who had intellectual disabilities. I've publish some of what's considered ground breaking work in this area and it's work that I find satisfying, interesting and it's work that I think makes a contribution to the lives of those with disabilities and the community. Sue me, I like my work. As years progressed I've moved into other areas of interest but have never left my position with the Sexuality Clinic and as recently as yesterday was there discussing the supports necessary for supporting an offender in the community.

Oh, don't I know that this is controversial stuff when we live in 'hang 'em high' days, but controversy or not the guys I work with deserve treatment and it's really effective treatment too ... measured by real measures - a lack of recidivism. Anyways, that's just the build up. I'd stopped telling people what I do because I never wanted the conversations that followed. People either got angry and railed against offenders or they got so curious that it was creepy.

"Social Work," became my answer because, I discovered, no one really wants to talk to a social worker.

But since being in the wheelchair, when people ask me what I do, I've been toying with giving into the temptation of answering. Probably because they think that I make crafts. I know this to be true because when one woman, in a grocery line up, started chatting with me, she asked if I had a job (not what do you do, but do you have anything to do) and I assured her I did. She said, "Do you make those lovely wooden toys?"

"No," my answer was cold and she knew she'd offened so she shifted her focus to getting groceries out of her buggy.

So yesterday morning when I was asked what I do, I decided to tell the truth (almost), I said, "I do sex therapy with sexual offenders". And she laughed an uncomfortable laugh. Like I was joking. Like I was making it up.

"No, really, that's what I do,"

I met sad eyes, "You know you don't have to be embarrassed about not having work. It's just good that you are up and out like this."

Thus encouraged she moved on.

She'd called me a liar and then gave me a verbal pat on the head and a pitying glance.

Trouble is, I work with folks that would get turned on by that.

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Get Your Hands Off and Your Nose Out Of my Accessible Spaces

Posted by Zephyr
12 Oct 07, 08:04 AM

I I visited my bank a couple of weeks ago, noticing that yet again, the automatic door for PWDs was broke. Grrr. I'd already asked about it once, as written about here. So once again, I asked Customer Service why the door hasn't been fixed, and she told me that it's been fixed half a dozen times, but vandals keep breaking it! Grrrr. Where do they get off, breaking my door? She said she thinks that people either slam the button too hard, or neighborhood delinquents are breaking it for the fun of it. I was flabbergasted, and quite pissed off. How dare those inconsiderate jackasses break something that someone else needs, something that is so obviously inoffensive as a freakin' Accessibility Button! Some idiots will break anything just to cause inconvenience to other people, and strut their stuff, like breaking useful things *on purpose* is something to be proud of.

I'm seriously considering suggesting they put a poster up, feating a picture of someone in a wheelchair. Underneath it should say something like, "There are people who need this Accessible Button. Please do not hit, slam, or vandalize this button. Thank you." I highly doubt it would convince the criminals, but it might get the obvious to stop slamming the button into the wall.

Today on the bus I had a great rant with a bus driver about accessibility on transit. I asked him if the next Skytrain had an elevator. He said happily, "Yes, they do and it's about time! All of the Skytrains should have elevators and escalators." Amen!

I went on. "I agree. Some days I'm in a wheelchair and I really need that elevator. I'm also really impressed with the new accessible buses.

He chuckled bitterly. "Some people get on the bus and complain about the new accessible setup. They say 'Why do people in wheelchairs need so much room?'" Uh...do I really have to answer that one? OK dumbass, we have big wheelchairs! That's pretty much what I said to the bus driver, minus the dumbass part. He continued, "They say, 'Why do we need so much space for people in wheelchairs, I never see them on the bus.'" Excuse me? Either you aren't looking for them, or they're not on the bus because the bus isn't accessible. If you build an accessible space, we will come. It's like Field of Dreams that way. Keep riding the bus and you'll see us, and then you'll know why we need so much space. Some of those mobility scooters can get pretty darned big.

And also, lots of moms with gigantic strollers use those spots too. People with walkers use 'em. People with luggage use them. People with wheeled dolleys full of shopping purchases use them. People carrying Very Big Items use them. They're primarily for PWDs, but they benefit TABS too. So get used to seeing us on buses and Skytrains. We're here, we're disabled, get used to it!

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Milking it

Posted by Elizabeth McClung
9 Oct 07, 06:46 AM

I was caught flagrantly speeding. The policeman has just pulled me over; I am female and younger than him.

Step one: make eyes as big as possible
Step two: assume the “Golly, I’m so sorry” look (with a bit of “dim” thrown in);
Step three: adjust top to maximize breasts; trembling chin and moisture in eyes optional.

The trick is to be stereotypically female, humbly apologetic and come up with a reason that while slightly ludicrous, actually sounds ditzy-believable enough to be worth repeating back at the stationhouse.

“I didn’t know if the speedometer was right because the car has snow tires?”
“The guy at the gas station said if I use my brakes going downhill they will burn out.”
“I’m so sorry, my dashboard light is out and I dropped the flashlight I hold in my lap.”

And that’s why I didn’t pay a single speeding ticket until speed cameras came in. Oh, how I hate those speed cameras.

Once I ended up in a wheelchair I assumed that I would be treated as a human being worthy of dignity and respect. What happened? I got left behind by a lot of bus drivers, I got ignored by a lot of people and I was generally miserable. Buses don’t leave me behind anymore.

The reason I don’t get left by buses anymore is because I “milk it.” Once I realized that most males see younger women in wheelchairs in a sort of Victorian fantasy stereotype, I totally pimped it. Want to make sure a bus doesn’t leave you behind? Sit in your wheelchair parallel to the door of the bus, with a slightly anxious look; lean forward a bit (and yes, roll the shoulders back to project those breasts from “headlights” to “high beam”) and with a slight shiver say in a soft, plaintive voice as if to yourself, “Oh, I hope the driver doesn’t forget me!” Of course project your voice just far enough for the people getting on to hear; repeat as needed until you find the person with “rescuer complex.” See, if this “lost lamb” look doesn’t have the driver not only making sure you get on but personally locking you in, then one of the passengers will “rescue” you by forcing the bus driver to let you on. While the passengers are verbally attacking a lazy driver in revolt, try for big eyes and a “little girl lost” look. Trust me, it works. I’ve actually had two passengers carry me and my chair bodily into the bus.

When rolling off the bus I always use my oh-so-sweet voice to the driver, “Thank you for ALL your help” or “Thank you for your extraordinary service.” You know the brainwashing is working when you have multiple bus drivers coming back, asking if you are okay and saying, “Now, you don’t have to pay when you ride with me” (usually followed by “darling”, “sweetheart”, etc).

Maybe there are good hearted people who are always willing to go outside their comfort zone to help a stranger. I spent my first five months in the wheelchair and didn’t find many. Once I started mainlining into people’s mental stereotype and began talking a bit like a lost 13 year old (those imaginary nice ones) I had people GIVING me things. I get odd discounts at restaurants and coffee shops; I get free clothes when shopping at malls.

Response: slight head tilt, shy smile and a soft “thank you.”

Yes, yes, I am evil. I am destroying the disabled cause. Whatever. Only, I’m the one getting a FREE mocha getting carried to me to the table of my choice by staff (when they put the mocha on the counter, lean forward, hands out, to reach for it, then look down at your wheels, follow with a bit of distressed breathy breathing while you look at the mocha again and back up at the staff with a furrowed confused/distressed look). I’m also the one living in a country with no disability rights legislation. Sure, I could do what I used to, stare at the cup, stare at the staff and say in my super-sarcastic voice, “Oh…okay, I’ll just put that in my CUP HOLDER shall I?” Except that a) most people then assume you actually HAVE a cup holder and b) now they are too scared of me to talk.

Of course, there are some times while playing out your Secret Garden/Little Nell scene that you end up in the middle of a different script all together. For example, I have been “milking it” in every bike shop within wheeling distance (all four of them) to keep my tires pressurized, true my wheels or do anything else my wheelchair needs for free. Yes, I guess I could do my own maintenance but why, when so many guys will do it for me? Except one day I got this older bike store owner to pump up my tires. I made a comment about how similar bicycles are to wheelchairs. He agreed. I said, “Except I have terrible brakes.” I was referring to my scissor brakes. He must have thought I was talking about braking with my hands because before I could react he was holding my hand in his. He looked me in the eyes and said, “I think they are perfect brakes, princess!”

Holy Crap! I did my head tilt, smile and then got the hell out of that shop. Dude, I am in my 30’s! Princess? I don’t even want to know what was going on there. I’m not looking for love, or a sugar daddy, just free stuff (okay, I guess that is sort of a sugar daddy – but I draw my line at hand holding; no sex).

I am not sure for how long or how far I will use this evil power I have acquired. But, during my first few months I couldn’t get a sales clerk in a clothing store to even approach me in my chair. Now, I’ve had sales clerks go into the wheelchair size change room, THROW OUT the women in there because I (looking bashful, slightly ashamed and up through long lashes and my fringe/bangs) want to try on some clothes. Then, when I go to buy the clothes, they “throw that one in for free” or give me a discount. Yes, you understand? It is total REVENGE. How else do you think someone like me can smile so sweetly or sound so sickly sincere?

If I had control, there would be a section of Ouch! boards completely dedicated to ways to “milk it.” Yeah, yeah, I’m a bad person; get over it. The only reason people treat me this way is because they see me as a stereotype instead of an equal person. I’m just using those prejudices against them (or to my advantage, woo hoo!). Here is another example: The very women, ten years younger than me, who call me “dear” or “love” in the way women will talk softly and reassuringly to a child who has a boo-boo are the same ones who can’t wait to “help you” (a.k.a. free stuff); if you just stare at them. I went to a community fair to buy some gifts for my nieces and nephews. I got a pile of tie-dye clothes from a woman who told me, “Take your time love” AND was visibly uncomfortable to be alone with me. Gazing at her with the “big eyes and insecure” look, I asked timidly, “How much?” It was $56. But the longer she looked at the “big soul” eyes, the more she couldn’t stop talking: “Well you are getting a bunch so I should give a group discount of $50....and you can have free socks for that outfit....well, let’s say $45....and free socks for that other outfit too…” When she sputtered to an end it was $40 and the two freebies. I hadn’t said a word.

Response: slight head tilt, shy smile and a soft “thank you.” (Milk it!)

Two final pieces of advice for beginners: 1) the more you return, the more they will see you as a person instead of a stereotype and thus, no more freebies and 2) Get a mirror and practice the “big eye” look. If you look like an “innocent” or a puppy people just want to pet and cuddle, you are on the right path, if your eyes are bulging out of your head and you look like a stalker; back to the mirror.

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Right to decide

Posted by Jemma Brown
8 Oct 07, 11:25 PM

It has been all over the news recently about Katie, who has severe cerebral palsy (CP). Her mother is trying to get permission for her to undergo a hysterectomy. To stop her daughter from undergoing the embarrassment and possible pain caused by menstruation.

This has divided opinions between both people with and without disabilities as well as the general public. It is said that doctors are also divided, and there is great concern that Britton will be in a similar situation to that of Ashley X in America. I have to also say my own personal opinion is to an extent divided, and that in this blog I am not trying to say necessarily that my view is the right one; it’s just the way I think.

I do not think it is right to perform a hysterectomy on a person where it is not for medical reasons that will severely damage a person’s life.

In this case from what I have read in the media I do not think it is right. To start with Katie has not had a period yet and her parents are looking in to this option because of fear of embarrassment, but is that on there part or that of there severely disabled daughter. Is it also not slightly embarrassing for complete strangers to see your nether regions before/during/after surgery?

Her mother also fears that her child will be in pain during her period. Let’s face it for most women period pain is something they have to put up with throughout life and usually dose not have a huge impact upon a person’s quality of life. Further more it is probably more painful for a person to have a hysterectomy than it is to have a period once a month. The stress caused to Katie during her time in hospital and before and after surgery is another concern, nobody likes hospitals. The recovery period for the operation includes 5 days in hospital and about 6-8 weeks recovering at home. (If you want to read all the gory details you can do so courtesy of the NHS direct website).

I think there are also huge ethical and moral considerations to think about, it clearly states that many women feel depressed after the surgery. Another issue I have is that this is not Katie’s own decision it is that of her mother, from the way the media portrays the situation it would appear Katie is unable to communicate her wishes, quite frankly there could be a voice screaming inside her head shouting “don’t let them do it!” but there is no way of knowing. I also see this activity as destroying the course of nature and in away removing Katie’s femininity, what makes her a woman.

However I can also see this situation from another point of view, that which reflects the delicate nature of a woman’s menstrual status, I no for a fact that I would not like it if I needed help with ‘toilet stuff’, and I do also understand that it could add another challenge to parents that are already struggling to cope with there severely disabled daughter, I do wonder what support is available for people caring for young people who may be going though puberty.

It makes you wonder when people start discussing this sort of thing where it is all going to stop. Is the next thing going to be the removal of men’s testicals to stop them having unwanted ejaculations?

If we look back into history this sort of thing has happened before, for different reasons. For example people with disabilities where sterilised during Hitler’s rule over Germany, before full scale killing was established in the form of the NAZI euthanasia programme (also known as T4)

I have to finish by saying that I actually am slightly disturbed by the thought of removing a woman’s uterus purely to stop that person having a period, and I sincerely hope it dose not become common practice.

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New disability TV and radio stations

Posted by Crippled Monkey
8 Oct 07, 05:37 PM

Two new disability media outlets have opened up on digital satellite - a TV station and a radio station.

First, Vee See TV, a station that you may have seen here on the web, now has some slots on Information TV, channels 167 and 168 on your Sky Digital box. it goes out Tuesdays at 3pm, Thursdays at 8pm and Sundays at 1pm. It's BSL, centre of screen, through and through - programmes from a capital D hard core Deaf perspective. Each slot is half an hour long - a new show every week. Have you seen it yet? Tell us what you think below.

I asked Vee See TV creator Susie Grant what "Vee" means - I've always wanted to know since Channel 4's 'Vee TV' days. And apparently it means Brilliant TV. "When BSL users sign the word 'brilliant' they also make the lip movement and sound of 'vee'". So it's a bit of BSL in-talk for disability geeks out there.

News is that Vee TV are also planning a 90 minute Christmas and New Year special so keep em peeled.

Insight Radio - formerly VIP On Air - has also recently launched on satellite. It's a station for visually impaired people that goes out on the internet and on 101 FM in Glasgow. All blind, all the time, with music, news and chat through the day - backed by the Royal national Institute for Blind people as they're now known.

All round the UK you can now listen to Insight Radio on channel 0188 on digital satellite.

Ladies and gents, where are the big media companies when it comes to disability? We predict further fragmentation and expect to see more disabled people providing niche content across the web and various emerging platforms. But will it be for the better or for the worse? Tell us ... or don't.

A TV changed my life

Posted by Emma
8 Oct 07, 11:53 AM

A very exciting thing happened at the weekend. our new television arrived, which wouldn’t usually get a blindy interested, but, it’s a Shiny 26 inch model, with built in freview, and audio description as standard.

Audio description is a soundtrack, added to a programme, which fills gaps in the dialogue by describing any action. The facility has to be turned on using your TV remote, and it plays to the room so there is no getting away from it. Around 10 percent of programming is currently described, but the RNIB are constantly campaigning for more.

This new television has actually changed my TV viewing experience for ever. I spent the past two days flicking around, clapping and squealing joyously when I came across an audio described broadcast. During EastEnders, I was treated to a description of the looks passing between Stacy and Max. During Friends, I knew why the whole audience were laughing, even when nothing funny had been said. I could have cried.

My housemates are also delighted with our new addition to the family. The Visually impaired one uses AD himself if he’s not sitting on one of the kitchen chairs, with his nose near the screen, and the fully sighted one is delighted because she can watch telly in peace, and isn’t regularly called away from what she is doing, to explain what’s happening during a rerun of Dauson’s Creak. Everyone’s a winner.

What are your experiences of Audio Description, or any other facility which has changed the way you watch TV for ever? Feel free to comment on this entry.

To find out more about Audio Description, and where you might get your hands on it, read the Ouch guide.

Here I Go Again On My Own

Posted by Zephyr
7 Oct 07, 10:43 PM

Forgive the WhiteSnake reference, although it does bring to mind Tawnee Kitaen writhing on the hood of a car. Can I say that? Anyway, I just broke up with my live-in boyfriend of three years, so it's just me from here on out. Well, me and the four people I started dating before the break-up. My sister advised me to avoid rebound syndrome and I was like, "Too late!" Although, does it count as rebound if they were there *before* the break-up? Anyhow...

It's gonna be hard. I'm losing my big, strong, able-bodied guy who did all the stuff that was hard for me, like taking out the garbage, carting my wheelchair down the stairs, etc. The local health care system doesn't provide Personal Assistants to PWDs unless they're in much harder shape than me, which is sad, considering that I can barely walk some days. Obviously, I can't stay here with the two flights of stairs. I plan to move out, get a roommate, find an accessible place, and get a power chair to make life easier. Now that I have to do my own shopping and errands with no strong guy to carry my stuff, I'm gonna need that.

I already have two people offering to be my roommate...but they're disabled too! However, they're disabled in different ways, so it could work. We'll see what happens. I'm still not sure who I'm gonna live with yet.

It would be ideal to find someone to crash here and contribute whatever they can until I find a good place. It can take a while to find an accessible, affordable place in Vancouver. We have a huge rent bubble because of the upcoming Olympics on 2010, so rent keeps increasing at a disgusting rate. I'm already paying $936 a month for a 1 bdr + den. I really can't afford more than that. Disabled coops are my best bet, but they are not the most tolerant of my BDSM lifestyle.

Break-ups suck when you're disabled and your partner was your caretaker.

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Depression in Children

Posted by Bipolar Works
7 Oct 07, 08:05 PM

When I was eleven years old I wrote a story:

I was standing on a small stone arched bridge. I was all on my own and there was not another person for miles around. Not a sound could be heard except for the whoosh of the fast flowing water beneath, and the gentle rustling of the leaves in the trees on the banks of the river. I could see the water rushing underneath the bridge, the white spray against the rocks an indication of its depth and power. If I looked carefully I could just make out the odd fish shooting past, coasting with the flow down the river. I was enjoying the moment, being completely alone with nobody else there to bother me.

My story was meant to celebrate the power of nature and being in the moment, the value of solitude and meditation. So I was somewhat bemused when my teacher at the time took me aside and with a concerned look on her face asked me ‘You don’t really feel like that do you K?’

At the age of eleven the concept of depression had not even entered my head and I really didn’t understand what all the fuss was about. I simply replied ‘Of course not, it’s only a story’ and that was that.

However, for some reason this event has stayed with me. It only occurred to me years later the significance of what had happened. Perhaps my teacher was worried that I was unhappy at home, or worse, suicidally depressed and planning to jump off the bridge in my story.

I’m not sure at what age children start to experience symptoms of hypomania or depression that could be distinguished from the normal ups and downs of growing up but I don’t remember any such significant symptoms until the age of about seventeen.

I have often looked through the diaries that I kept from age thirteen to fifteen to see if there is any evidence of this, but all that resounds from the pages is a repetitive enthusiasm for holidays, friendships and sports activities, unless I have forgotten how to interpret the code of multi-coloured pen.

As a result, I am strongly against early diagnosis of severe mental health conditions and over-medicating children such as is the practice in the USA. My own preference would be to treat them with counselling and cognitive behavioural therapies, a healthy diet, vitamin supplements and fish oil. Unnecessarily poisoning children with antipsychotic drugs and risking obesity and diabetes at a later time in their lives is not the answer.

What do you think? Is it a help or hindrance to have an early diagnosis? Are you for or against the use of antipsychotic drugs at a young age?

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I'm a Fraud

Posted by lilwatchergirl
7 Oct 07, 05:33 PM

I've been campaigning for disability rights for about twelve years. Not consistently, or in any particularly stunning way, and barely at all for the past few years. But since the age of about seventeen I've been quite keen on the Social Model (when it's applied in a balanced way), and generally impressed with the idea that disabled people should have equal rights and a fairer deal in society. So I did my little bit of campaigning, as far as I was able to. Which was fine. Except that, when my most immediate impairment was a significant mental health problem, I felt like the worst fraud imaginable. I would walk into conferences and feel guilty about being invisible, about calling myself disabled when surrounded by 'real' disabled people (whoever they are). I would believe people who told me that they were 'more disabled' than me because they needed to use accessible toilets, completely discounting the possibility that my life might be just as disrupted - in a different way - by bipolar disorder, various anxiety conditions including OCD, an eating disorder, a tendency to walk around all night planning the most efficient place to jump off a bridge under a passing train, scars on my arms that I still have to hide to this day if I want to be allowed to continue to work as a teacher, and an ability to think that everything is all about ME ME ME (which must be quite irritating to those people who are, well, not me).

If I ever thought about it at all, I assumed this would all be different if I were a wheelchair user. (There's always been a possibility that I would develop pain and/or mobility problems - I have a congenital joint problem that may or may not be at the root of the big mess of diagnoses I'm currently trying to get my head around.) And then suddenly I need a wheelchair and/or walking aids - and home care, and disability benefits, and dropped kerbs, and all of that weird stuff I never thought about before. So now I'll feel accepted, and a part of a community, right? Well, no. Because it turns out that I'm just not very good at this disabled thing. I can't buzz around in a stylish self-propelling wheelchair - I have to get other people to push me around (while I sit there grumbling, shouting at them to go RIGHT, I SAID RIGHT DAMMIT, and warning them that if they tip me out, they will be beaten to death with my walking stick). I'm too afraid to get on buses in my chair. I worry that my friends will judge me for using mobility aids. I often look rather ridiculous in the staff room at work when I get stuck trying to turn my wheelchair around, or when I can't work out how to carry two cups of hot coffee while using a stick. I want my life to be straightforward and as easy as possible, even if that means looking incredibly stupid by putting a cup-holder on my wheelchair (well, it's better than looking incredibly stupid because I've just spilled tea all down my trousers.) I say the wrong things: after more than a decade of understanding the Social Model, I still refer to 'disabled toilets' when I mean 'accessible'. Worse, I still disagree with one or two elements of the aforementioned Model, and stubbornly refuse to stop referring to my 'illness' - because, let's face it, that's what it is. I seriously dislike being in pain, being depressed, having panic attacks, having joints that suddenly go on strike and refuse to keep me upright, and having to carry on through severe fatigue - so much so that I would quite like a cure for all these things, if it didn't disrupt my life too much. I still absolutely believe in working towards a more egalitarian society where disabled people are not held back by either physical or attitudinal barriers. I'm just a bit crap at working out where I, personally, fit into that lofty ideal.

The wheelchair and collection of walking sticks don't make me feel any less of a fraud. Neither does campaigning, blogging, fighting for benefits and access, being a wheelchair user at work, or having a disabled person's railcard. But then, I don't think anything would. I've never been good at fitting in. I may not like everything about the Social Model, but I'm still sure it's the best tool we've got for persuading society to give us full access and equal rights. I may not feel part of 'the' disabled community, but I still know that there are enough of us who want change that we can make things happen, however slowly. So I shall continue to feel like a fraud and generally a bit useless, because it's better than the alternatives. I'm a crap crip, and I'm proud of it.

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Carpe Diem

Posted by Mark
6 Oct 07, 09:37 PM

A gentleman with SMA recently e-mailed me after discovering my blog. He included his website URL and, naturally, I checked it out. He's raising money to have himself put in cryogenic stasis until a cure for SMA can be found. While I'm dubious about the scientific merits of cryonics, I admire his determination to keep death at bay. I think about my own mortality from time to time. At 34, I've probably lived longer than what is typically expected for someone with my degree of disability. The decision to put me on a ventilator at age thirteen is likely a major factor in why I'm still here. Without it, I probably would have been done in by something as seemingly trivial as a cold virus a long time ago.

Anything can happen, of course, but I hope to stick around for a good while. My heart is fine and I don't have any other major medical issues at the moment. The vent and the occasional course of antibiotics should be enough to help me fight colds and flus. And if I'm lucky, I'll live long to benefit from medical advances that might extend my life for a few more years or even decades. I don't expect to ever regain use of my atrophied muscles, but I'd really like to have one of those brain-computer interfaces that researchers keep promising is just a few years away.

For all its hassles and occasional unpleasantness, life has been generally good to me and I still have plenty of things remaining on my long-term to-do list. If I was going to be born with a significant disability, it might as well be at this point in human history. Here's hoping I can make the best of it.

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Ooo a grey area

Posted by Jemma Brown
5 Oct 07, 03:26 PM

Well I have found myself in a rather odd grey situation, its all about prescriptions and disability and age and status.

I shall explain, due to my many health conditions I am on a variety of different medications, this is fine, they keep me ticking over nicely (sometimes) but soon I will be coming of age in terms of prescriptions.

Up to and including being 18 years old and still in full time education prescriptions are free, yes you heard it completely free.

But on the 31st of October (yes, Halloween) it’s my birthday, I am going to be 19 (I FEEL OLD!). So I will be obliged to pay for prescriptions.
It’s all a bit strange but basically I’m still in full time education and I have various disabilities so I approached my GP about medical exemption, meaning I don’t have to pay.

And this is when all the rules get a bit … fluffy.

In order to qualify for medical exemption because of a disability I must have:

“A continuing physical disability which means I cannot go out without the help of another person…”

Now I find this a bit odd really, because I can go out on my own without the help of another person, but with a long cane. And then I cant get to my doctors surgery on my own because its not on a bus route, nor can I read the prescription form thing, so I get my dad to pick them up fill them out and then hand it in at the pharmacy.

So my GP is confused she doesn’t have a clue weather I qualify or not.

This has led to me having an interesting phone around to find out weather I count or not.

The official line from the prescription people is that when I get a guide dog that will count as “help from another person”, but while I am on the waiting list, just getting around using my long cane I don’t really qualify, the bottom line was basically “it’s at your doctor’s discretion”.

My poor GP doesn’t no what to do so I have been having a phone around trying to find out more.

Also the rule seems a bit strange; lots of people I imagine are in a similarly odd situation. I’m sure lots of people find it difficult to get there prescriptions or read them, and that the vast majority of people with disabilities can make it outside the front door of there house independently, and what happens if you have a long term physical disability that means that sometimes you can go out without the help of another person but other times you cant.

I guess it’s at your doctor’s discretion

Ooo it’s all very confusing, I could probably keep coming up with more and more situations.

• Visit Diary of a Monkey

All-in-one gizmo for blind people

Posted by Emma
5 Oct 07, 12:41 PM

All us disableds, and probably blindies more than most, long for the day when we can splash out on a truly all-in-one device, which deals with our every access need when on the run. Well, I was about to pop Ouch's news section online this morning when I came across an article by BBC age and disability correspondent Geoff Adams-Spink, which made me wonder if that day might be closer at hand than I thought.

It's an article about the Tellmate, a product which we should be able to get hold of by the end of the year for around 250 quid. According to Geoff, this remote control style gizmo, "has a one gigabyte memory and can be used as a music player, radio, clock, talking book player, voice recorder and label reader".

While none of these concepts are new on their own, I've never seen them presented in one handy gadget. But please Santa, could you make it so there is a bit more memory, a colour detector, a talking telephone, a portable scanner for text and maybe a GPS device built into this nifty little package? Then bingo, all will be well with the world. It's not too much to ask, is it?

What's your idea of the perfect pocket-sized gizmo? What difference would it make to your life? You can add your wish list by commenting on this blog entry, and Who knows, some factory in Singapore might be reading the Ouch blog, and decide to put it into production.

He Could Have Anybody

Posted by Wheelchair Dancer
3 Oct 07, 05:51 PM

But he is with me.

Over the weekend, we were at a party given by another wheelie friend. This was her territory, and we were meeting some of her longterm friends, most of whom were non-disabled. There was, of course, a disabled posse (and we raised hell), but I was the only one who had brought a partner. As my wheelie friend put it, now there were two of us with wheelchairs and partners. This relieved the pressure on her partner and, we hoped, changed the conversation. Mr. X was no longer the saint who had stuck with this crippled woman. Now, there were two of us. People do this. It's normal. And they are not impossibly good people. A man who devotedly cares for his burden of a disabled wife. Wizard and I did this dance that involved him spreading his legs, me shooting my chair between them, and sliding my hands down his back. There were other wickedly sexy moves, too. That should change the dynamic.

And that's it. That's what makes me so angry. We are just like any other couple; we have good times and bad times. But mostly, they have nothing to do with my disability, and everything to do with the fact that we are two different people who have decided to do this living together under the auspices of marriage thing. I'm fastidious about punctuality; he's on time if he leaves 10 minutes after. He cannot stand open things; I never close a door (the fridge is an exception) nor put the lid on anything (giggle). He never puts his stuff away. NEVER! There's always some pile or other on the floor. *I'm* the saint around here (huge grin).

And he's not some kind of sex freak -- why is that the common assumption about disabled sexuality is that anyone who engages in sex with us is a little, well, you know, odd. Why is it that when people learn that we are in a relationship, they go all mushy? Oh that poor man puts up with such a burden; he's so good. How nice. How sweet we are together. He must care for her so much -- he could have had anybody. Do any of you get this?

In my mind, I add on an extra layer of criticism. In the US, while it is common to see non-white people pushing the chairs of white people, I have never seen an able-bodied white person recognizably in a personal relationship with a disabled non-white person. I feel the criticism coming at us ... me .... really strongly -- even if it isn't actually there. Why is that cute white man with black disabled woman? He could have had anyone.

I wasn't disabled when Wizard and I first got together in 1991. We went hiking, backpacking, running. Our love for the outside didn't fade when both of us became involved in careers that took up all of our time, but we were there less. And when disability entered our lives, it didn't seem to make that much difference. I was freaking out. Of course, I was. But Wizard seemed pretty calm and directed about the source of our connection -- inner. It's formed while we do stuff together, but the things we do aren't the connection. We've had to make accommodations, adjustments, yes, but so has every other couple. We've had to rethink how we do and approach almost everything, but we've been together for 16 years. Is there any successful relationship that hasn't had to make these kinds of changes over the course of such a long period of time?

Life is a series of comings and goings. We use and rely on each other's skills. And, yes, I do contribute useful stuff to our relationship. After Wizard was hit by an out of control car, my knowledge about mobility impairments became critical, both in the first hours and in the months afterwards when we were both in chairs. That was hilarious. The staff in the hospital were confused, and the people on the street were scared as we barreled towards them. But beyond the disability specific knowledge, I am a person. And the emotional, intellectual, and artistic powers I bring to our connection are part of what keep us interested in each other.

Wizard is conventionally good-looking -- 6'3", clear blue eyes, long eyelashes, a huge open, generous smile. He's smart, very smart; he's kind, funny, gentle ..... He might have attracted anybody. But whether or not anybody could live with *him* is a different matter. I gotta tell ya; he's an acquired taste.

• Visit Wheelchair Dancer.

Change of Season

Posted by Bipolar Works
3 Oct 07, 03:08 PM

Autumn has definitely crept up on us here in the UK. The temperature has dropped, the leaves on the trees have turned a mixture of red, brown and yellow and fallen to the ground, it is darker in the morning and there is a distinct chill in the air as I struggle to get out of bed and ready for work in the morning.

Like everyone, the seasons affect my mood to varying degrees. Not so much as they used to now that I am on effective medication, but in autumn and winter, I struggle with the odd depressive mood and in spring and summer, I am prone to hypomania.

I have not been posting so often recently, because I have found that dwelling upon my bipolar disorder in this way has been getting me down. Instead I want this to be a happy post where I can share with you some things that make me happy so that I can forget all about bipolar disorder and pretend to be like everybody else for once.

Here are seven things that make me happy:

1. Relaxing in front of a real log fire
2. Eating home cooked food in a decent pub drinking real ale
3. Relaxing in a warm swimming pool where I am the only occupant
4. A good night out with friends or family
5. Shopping for clothes and finding something that actually fits
6. Playing my favourite music over and over
7. Seeing my six month old nephew smile

What makes you happy so that you can cope better with life?

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

Disability, degrees and ... err ... Lemsip

Posted by Jemma Brown
2 Oct 07, 11:30 PM

Well firstly ouchers I have been a tad under the weather of late, hence the lack of my presents here, but alas I am breaking down even more barriers by blogging thru my extreme illness… No ouchers this is not related to my disability but I have a cold and need lots of sympathy and love. One thing that has helped me feel slightly better is the arrival of my ouch podcast mug, witch I of course filled with Lemsip.

Despite the constant flow of gunk descending from my nasal passageways, I have been trying to work out what the hell I’m going to do with my life once I leave collage.

My very original plan was to one day be a PE teacher, something I would still like to do but to be quite frank is hardly a suitable job given all my ‘issues’ with things like seeing the ball before it hits me in the face and standing on one leg without falling over. it would be near impossible, a dream out the window there. And I can honestly say when I woke up and accepted that, it hurt a lot that’s my disability deciding I can't do a job. I’m fine with it now, I mean would you want me teaching your kids PE, think of the risk assessments….

My next plan was to be an osteopath or chiropractor unfortunately last year I massively didn’t get the grades I needed to do osteopathy, so that has flown out the window.

So I started this year my 3rd and final year at collage not having a clue what I wanted to do as a degree subject or were. I did quite a lot of searching and hurrah I found a degree I wanted to do. In fact it seemed to perfectly tie in with everything I want to do. I wanted to do disability studies at uni, the only problem being there are only 2 universities in England that do the course, one in Liverpool and one on the border in Scotland. So if you want to do disability studies and you live up north your fine, unfortunately, if you live in south Hampshire like I do its quite a problem. Liverpool is a bit out of the question its far to far away, if I could drive it would be less of a problem but I cant, my dad couldn’t even drive me that far. And I can just imagine the trauma of trying to get to Liverpool, complete with long cane or guide dog if I get one by then and a mixture of saucepans baking trays, clothing and all the other stuff people need at uni. So that idea was out and I was left with even less of a clue.

Until on Monday I had a careers interview witch based on previous experiences I was slightly nervous about. (At school there was a very negative response to me and my disability from the careers people) But (to my surprise) it was actually really good. I now no what I want to study at uni I still don’t fully no what I’m going to do with it but I have decided that I want to do a combined honours of human rights and journalism.

Who knows what it will lead to in the form of a career, you never no I might actually land myself a full time job working for ouch at the end of it (hint).

In other news I survived duke of Edinburgh with the following fall scores:

Day one: 5
Day two: 9 (including falling in cow poo)
Day three: 4… but I stopped counting, when we tried to cross the marsh.

I fell over literally about every step on the marsh, ended up waist deep in water. my walking boots now smell horribly like bog!

• Visit Diary of a Monkey

Welcome to Ouch's blog, where we bring you posts by disabled guest bloggers from around the web, plus entries by members of the Ouch team on disability topics big and small. Bookmark us, and be sure to add your comments too.