Archives for January 2008

Having just read disability Bitch’s latest article, it has to be said I agree with her on her hatred for health related statistics.
Her article and I suggest you read it, focuses on the fact that there is now an average age for you to suffer with depression, it is 44. And that people usually start to feel better around the age of 51

Now for me this is incredibly shocking, I was diagnosed with depression at the age of 18 I’m now 19 the issue is obvious.

Are the statistics boffins out there telling me that I’m going to feel this S@%T for the next 32 years!

I seriously hope they are wrong.

Depression is depressing enough on its own without horrific statistics like this to kill of any hope of recovery that was dwindling inside.

I’m still at the stage with my own depression were I’m not sure I will ever feel the way I did a few years ago again, I’m not sure if I’m going to recover and if I do what will I become having experienced the dark that is depression.

I don’t know what is going to flick that switch inside my head and make it all better or indeed worse.

Today it has struck me for the first time that I am indeed a teenager a with a mental health problem, don’t get me wrong I am fully in touch with the fact that I have depression, I am not in denial and I am actively trying to ‘get better’ but it is today that I have connected the two things, the condition and my age.

I did this because recently for my communication study’s key skills I have been looking in to a number of articles focusing on disability and comparing them. While I was doing this I got thinking about mental health issues in the work place, and the ways in which employers are required to accommodate employees with mental health issues. Then I got thinking about my own situation, quite frankly my college are appalling when it comes to accommodating students with mental health problems, they have no policy or procedure in place to support such students and there is pretty much no help available with the exception of the odd study skills workshop, there is no flexibility over things like deadlines of assignments and students are left to cope pretty much alone.

The main point of this entire post is that young people with mental health conditions have it hard enough without statistics like this. Its hard enough to get a medical professional to take a teenager seriously and not fob them off with the ‘your just a teenager’ kind of response, some thing I experienced the first time I sought help for my depression, I was told to try and keep a regular sleeping pattern and to exercise but over all I was told that I was a teenager and that there was indeed nothing wrong with me, I am 100% positive that this diagnosis was made purely on my age at that point I was not quite 18 so was ignored.

There's some sad news making the headlines today. TV star Jeremy Beadle died of pneumonia yesterday (30 January), at the age of 59.

During the '80s and '90s, the elaborate practical jokes he sprung on unsuspecting members of the public in series like Game for a Laugh and Beadle's About drew huge audiences to Saturday night ITV. You can read a full obituary on the BBC News site.

If you've been listening to The Ouch Podcast for a while, you might recall that Jeremy was one of our early guests on the show, back in June 2006. Presenters Mat Fraser and Liz Carr asked him about his TV career and his love of trivia, and he talked frankly about his attitude towards his disability - Poland Syndrome - and being treated for kidney cancer.

As Ouch's small tribute to Jeremy, here's the complete interview for you to listen to again (MP3 file, 4.9mb). Or, if you prefer, you can read the transcript.

My future was stolen from me. No, not by disease but from people I encounter daily whose vision is so clouded by my disability they cannot see me. My past has been stolen too, thrown away as irrelevant. Even my care workers number among those who imprison me in amber: a stasis without expectations, without common connections, aspirations, or identity. ‘Disabled’ is a word that has no past, no future, and only a continuous state of being.

When I was able bodied conversations went like this:

Person A: “Hey you just moved from the England right?”

Me: “Well, they like to call it the United Kingdom, but yes.”

Person A: “Cool, found a job yet?”

Me: “Not yet, I’ve applied for work teaching at the universities and some government jobs.”

Person A: “Oh in this job market you don’t have to worry, I work for government, great vacations, I just got back from Mexico, ever been there?”

Me: “No, but my partner and I want to go to Hawaii if a good deal comes up…” Blah, blah….

I cannot remember ever, while in the wheelchair, have a person ask me what my job was, or what career I was planning. Today when talking to the assistive technology department of BC, I informed her that yes, I do work and yes I have deadlines which was met with: “Really? …I mean, wonderful, you are a perfect candidate!”

A bit later, after another, “Really?!” from telling her I write from three to five hours a day, she delicately brought up the aspect of money. After a year trial, I would have to buy any adaptive technology (like Dragon 9) at a substantial reduction. I said that though I don’t qualify for disability funding (my partner and I would need to be significantly BELOW the poverty line) and while we aren’t well off since I get my book residuals in Feb, I didn’t anticipate the payment as a problem. “Oh…..OH!”

Lady, I’m…er, 29 and holding, is it so impossible to think that I have a past, I might have/had a career or that I could have SOME independent funds? Apparently.

These are a few of the questions I am NOT asked: are you going to university, are you thinking of getting a masters degree, are you thinking of moving in the future, what kind of jobs did you have before now, where do you go on vacation, have you been to country X, have you seen the cheap flights to Y, what new projects are you starting, what new hobbies do you have, are you dating, are you seeing someone new, do you have a partner, how long have you been together?

As a disability ‘newbie’ I quickly ran smack into ‘the rules.’ No, not PWD rules but those actions and attitudes which are just “not on”, disconcerting, not appropriate or downright offensive to so many in the able bodied world (especially those employed to “assist us”). My natural personality seemed particularly offensive: driven, intelligent, visibly bored, sarcastic, and prone to try anything. And for me to act as if I was….well someone, someone who had “a future”, someone who did not suffer fools and someone who acted as if they were…an equally significant person was pretty darn distasteful. This is disability, NOT customer service!

To imply I was JUST LIKE THEM was both inconceivable and offensive. When I told a same aged care worker how beneficial that she was in a union in case of disability she laughed, “I won’t need that, I’m young and I exercise regularly!” Yet she “knew” that months before working for me I was not only exercising vertically but in national sports competitions.

One day, I decided, because of my neurological heat intolerance, I needed some wicking exercise tops, so I wheeled to the local specialized running store. You would have thought I was on fire the way people either ran to avoid me or ran to contain me. No one in a wheelchair had ever come into this oversized dedicated running shop where EVERY changing room had two steps up to enter.

A person in wheelchair doesn’t have a past; that’s what the shocked looks told me when I handed the people at Triumph, the government funded disability employment agency, my multi-page CV/resume. “This is my research one,” I told the stunned case manager, “Do you want the teaching one or the management one?”

“No, no,” she said, as she slowly spread the pages before her like a magical scroll from legends, “this is MORE than enough.” Wait, this isn’t just about getting me an entry job doing data entry or stuffing envelopes right? This is about career development in a desperate labor market….isn’t it?

I just started badminton. I called the front desk of the Y telling them I was going to be there Sunday for badminton and they might tell the organizer I was in a wheelchair. “Uh, I don’t think that’s going to work…..not in a wheelchair.” By this time, 10 months into the walls and cages of people’s minds, I just sighed and said, “I am about to spell my name, Elizabeth McClung, and I will be there Sunday.”

After I warmed up with the director, we rested and people starting breaking into groups. I asked this person and that person but no matter whom I asked, they either weren’t playing right now, or didn’t want to pair with me, or were already paired. Every one of the 14 people in the gym knew exactly where I was, had stared at my chair, yet not one of them would play that game of badminton with me, nor the game after.

The Y director noticed, walked into two games, pulling a guy from each of them and said, “You are playing doubles with us.” The Y director and I won. People said, “Yeah, we can double, I saw you play and you were pretty good.”

Yeah, but I’ve haven’t seen you play but I’ll give you a chance anyway. If I said back to them what they had enacted to me, I would have seen the most offended faces possible. But like I said, I am 10 months into the walls, cages and expectations. Maybe even I got worn down a bit.

I am getting tired of trying to fight an invisible foe, one hiding in the minds of those I face. You don’t know what I’ve done, or what I am already doing. And you never will, because you have chosen, instead of seeing ME, to see only ‘Disability.’

• Visit Screw Bronze!

... it defiantly has its down sides, today for the first time in ages (ok, not that long really) I fell over and it reminded me of how much I HATE falling over.

I haven’t had a “floor incident” in quite a while, if you don’t count the many on my silver Duke of Edinburgh; 11 in one day IS quite impressive! So to fall over whilst simply walking down the road today was a little distressing. The most irritating thing is that it’s a road I walk down on a regular basis and I have no idea what made me go down. I blame my floppy ankles they are so double jointed and strange that they can turn over, not hurt at all but I just end up on the floor.

Of course the worst thing about the whole incident was that I put my elbow through my pizza, very traumatic stuff.

I am defiantly in need of some sympathy, I managed to take a small chunk out of my knee on one side of it and graze the other, and of course I had to walk home with muddy, bloody knees which just isn’t a good look.

I fear I may have ruined yet another pair of trousers; I melted some playing Goalball last week, possibly some shopping is in order.

Now all though this post is mostly about me feeling extremely sorry for myself, there is another thing I wanted to write about today.

There are plans to completely overhaul the current system of blue badges, AKA: disabled parking badges. Under the current rules I am not entitled to a blue badge, if I was registered blind I would be, but being partially sighted is not enough alone. Equally I am not entitled for a badge purely on strange biomechanics that create incidents like todays.

I think it’s a bit bizarre, I’m entitled to DLA and all the other perks to being disabled but I’m not allowed a blue badge, but my mum is because she is registered blind, sounds to me like the system does need a little bit of work.

I know that a lot of disabled people feel that blind people should not be eligible for blue badges; needless to say I don’t agree with this, there are times especially as a guide dog owner when having a blue badge is an essential.

• Visit Diary of a Monkey

I was talking to a friend and fellow M.E. sufferer the other day and she mentioned that she’d just passed her 10 year ‘anniversary’. That is, 10 years of being ill. It struck a note with me because I too am heading towards the 10 year mark. I was diagnosed in February 1998 when I was 13 years old. Thank goodness that no-one was able to tell me then that I’d still be here this far down the line. A couple of years in I was informed that the average length of the illness for someone struck down in their teens was 5 years. Harumph. Man, I wish I was average! It was probably only a couple of years ago that I finally came to realise that in all likelihood I’m never going to get rid of this illness. Barring some sort of miracle I’m just going to have to get used to living my life bound by these restrictions.

In some respects I can’t really imagine what it would be like to not be ill! Sure, for the first half of my 23 years I was fine and dandy (ish) but I can’t very well translate that experience of health to today. Being a healthy 8 year old is rather different to being a healthy 23 year old!

When I was diagnosed with M.E., Celine Dion was No 1 with My Heart Will Go On and petrol was a mere 60p a litre! Time flies when you’re having fun! Strangely I remember that my feeling upon being diagnosed was of relief more than anything else. I’d been ill for months beforehand and no-one had been able to tell me what was wrong. Finally I had an answer for my friends, teachers etc. Although in truth, one of the most frustrating things about M.E. is actually the lack of answers available. M.E. raises more questions than you can shake a stick at. Causes? Don’t know. Treatments? Don’t know. Prognosis? Don’t know. Thanks guys, most helpful.

10 years eh? Bah. It’s just a number. Bring on the next 10! Do I sound convincing?

• Visit Ponderings and Ruminations

You're just so articulate. So well-spoken.

I roll my eyes and make the 'v's gesture (OK, I never said I was cool), but, fortunately, the person on the other end of the phone can't see what I am doing. I get this a lot though. Articulate. Well-spoken. Nice accent.

As a black nondisabled person, these words all too frequently expressed a white person's surprise that I could string together a sentence that "rose above the usual street English -- you know, that ugly nonsensical Ebonics -- of African Americans." Barack Obama is getting a lot of the same comments. As a black Brit living in the US, my accent was a double whammy. In the hierarchy of accents here, British English, for some incomprehensible reason, occupies a special place -- it is somehow more "pure" than American English. This is linguistic rot, of course, but my accent used to get me a measure of respect that is denied speakers of other dialects .... at least, that is, until they saw me. As one person put it after meeting me, "You're more of a dusky English rose."

Now that I use a wheelchair, these comments have taken on a different hew. The tone seems meaner and the point of reference is not just the way I pronounce my vowels. Now, I feel that both the intellectual content of what I say, the complexity of the way I speak, and even the fact that I *can* speak are measurements of my value as a citizen.

This disgusts me.

Since when has human worth depended on ability to communicate? Why does respect depend on ability to speak? Language is a rich, beautiful, flexible and complicated thing. But we abuse it. We abuse it when we make statements that suggest language separated us from animals. We abuse it when we assume that the sign languages are not languages. We abuse it when we assume that verbalism and oralism are the only significant means of communication.

We diminish ourselves as human beings when we assume that certain people do not have the capacity to communicate. We diminish ourselves as human beings when we assume that certain people do not have rich and complex inner lives and minds. We diminish ourselves as human beings if we reward only those who communicate according to typical patterns.

• Visit your "oh-so-articulate, but not necessarily well-spoken"Wheelchair Dancer

Pain drives out language; fatigue fogs the mind. A number of years ago, before my chronic pain got so intense, I used to be clear-headed, quick and sharp, but now I struggle to string words together. I labour over sentences and, with much effort, try to get some flow into the words. I pause and wait for my thoughts or opinions or feelings to surface through the noise of pain; or I try to wrestle it out of me, plucking at words and pulling sentences together. And it ain't easy, let me tell you. Writing is now a very slow process. Speaking is a bit easier, but is often tiring and never quite matches my sense of what's inside me. I miss my clear, accessible mind.

It's hard to write about what it's like not being able to write! Hard to explain what's happening in those blank, muddled times. Or those times when things spin around in my head, and though I sense that there are clear thoughts in there somewhere, I just can't grab hold of them. It's hard to explain what it's like to drag thoughts out of a pain-addled brain.

There are many things I would like to write about and discuss in detail with others, but it gets mucked up. Staring, staring at the empty page, the white comment box. I read online discussions and then gaze blankly at the comments form. I know I have an opinion and would like to join in, but all I get is the thick, sleepy static of mental noise that overwhelms articulate thought. When I do write, words and concepts come slowly, and I often fail to reflect the complexity or clarity of my thinking.

I know I'm not alone in my battle with this mental murkiness. People with Fibromyalgia talk about losing many mental skills like math, short term memory and a sense of direction to 'Fibrofog'; folks on my chronic pain listserv write about having a horrible time trying to speak clearly through their pain to doctors and loved ones and many medications, like those that treat depression or pain, mute our mental capacity. Many of us live in a fog.

I wish I could just let it out, all that is clear and bright and creative. If I could, it might look something like this:

[Visual description: Six black and white child-like drawings of people, many with visible disabilities. The one in the middle has its mouth open and has a flourish of spiraling, black and coloured lines coming out of the top of its head.]

• Visit Chronic Holiday and Body of Work

I'm waiting for an envelope. Well waiting for the contents of an envelope, to be more accurate. But the envelope is what I'm on the look-out for. An envelope in that fetching shade of brown, with my full name printed in that attractive government standard font, peeking out from behind its little plastic window. They seem to delight in letting the world know my middle name. My fate resides inside the envelope. Am I to be summoned to a medical examination or simply left to get on with my life, incapacity benefit intact? Not to be pessimistic but I get the feeling that the latter is a bit of a pipe dream. I shall be summoned to the ridiculous medical examination to discuss all of my invisible symptoms. They may as well call it a medical interrogation. No examination is going to help them assess my physical capabilities.

I have a hate-hate relationship with the DWP. Yes, I'm grateful for the benefits I receive. I'm glad there is a welfare state. But for goodness sake they need to get their act together and recognise that there are numerous illnesses and conditions for which their forms and examinations are about as relevant as a mobile phone to a hedgehog.

I loathe those forms with every atom of my being! Do they not understand that a disability can vary from day to day? Who knows if tomorrow I'll be able to pick up and carry a 2.5kg bag of potatoes? I seem to have to fill in every 'More information' section on the whole form to clarify and explain my answers. I have no problem walking up and down stairs - actually, I do have a problem walking up and down stairs but none of your options are applicable to me! It's blinking depressing having to think through every aspect of my life and how it is difficult for me without then having to formulate it into some sort of coherent paragraph that the lackeys at the DWP will understand. It's like talking to a small child - I have to spell it out to them, one syllable at a time!

I just about survived filling the Incapacity Benefit forms this time round but DLA still eludes me. Early last year I had a severe relapse and decided that it was worth my applying for it again. Before I had reached page four, my will to live had started to eye the exits and a few minutes later it made a beeline for the front door. Sad to say, I gave up. The stress of the whole exercise was too much for me in the state of health that I was. Even with my mum's help I just couldn't deal with it. David Cameron may be planning to cut the number of IB claimants but he needs to look further than that. The whole system needs a radical overall; starting with new, relevant forms for those of us with fluctuating disabilities.

All those in favour, say aye!

• Visit Ponderings and Ruminations

I am writing this, monitored by my care worker, who had to save me from asphyxiating because my diaphragm won't work properly. I lost an hour in a haze of pain, moved from position to position with my shoulders and ribs straining as I tried to suck down air like a thick shake through a narrow straw. We, the PWD's, caregivers and friends get used to things that others think are unbearable. Indeed, maybe things we once thought were unbearable. But as hard as these things are to endure, for me, the hardest is to endure them alone.

I did write a great piece yesterday on the idea of how exactly are we to 'fight' that which is part of us (and not in our control either). You can read that essay, called 'Fight or Resist' on my own blog, but instead I'm going to go back to one of the purposes of Ouch: the connection we gain in realizing that we aren't alone. Alone in our fear, in our frustration with paperwork, and assessments and accessibility also the joy of doing something like cooking when you might only have a few “good” hours a day…or week. And in the interest of that, I am going to do two things, first is introduce some different perspectives. Second is to talk about a series of books I want you to get, because if you are reading this post, then you ARE one of the main characters and heroes of this series (and when is the last time you have felt that?).

Different Perspectives: Here are some blogs that cover medical and disability conditions, which I am sure some (many!) of you will find a connection with:

The Seated View: a woman and artist who became a wheelchair user at 16 talks about life and living from the seated view. I highly recommend her post about her growing into her sexuality as a disabled woman, without role models.

Waiting for Rain: a female disabled veteran of the US army with post-traumatic fibromyalgia with fatigue. I recommend her post about the doctor who says the reason she has no pain relief is that she is not taking her pain medication “with the right attitude”.

no day but today: is the blog of a man who after years has finally been diagnosed and is being treated for Lyme Disease, here is his post on getting diagnosed and the drug cycle they are trying, you'll have to read the rest of the story to find out how it is going.

Badgerbag: The pic says it all! I'm having a blog crush of her AND her writing: she also has a rather full bag of disabilities. Her post ranting on her mis-diagnosis specifically and the problem which so many now unfortunately experience, is not to be missed. Personally, it has only been 10 months and the “oops, nope, you don't have that” has already happened to me twice.

Ms. Bond: a woman who has MS since age 10 (that's right 10!), I liked her post on her “right to be disabled” so much that I adopted her ideas and then thought they were mine! Oops, sorry Ms. Bond.

Marla Baltes: a woman blogs about raising her daughter who not only has Autism Spectrum Disorder but also a rare Chromosome 6 disorder. After a post of her daughter's transition anxiety in a social setting, she shares a journal entry in a post showing the change from six years ago (it is heart wrenching stuff). If you just want an understanding of one type of ASD, I can think of no better blogger than Marla, as her photojournalism, like this post showing her daughter reacting to a Mariachi Band is more vivid than a 1000 words.

Second part: I beg you, go get the series of books call Translucent. Why? Because this series is about a person with a disability and the people around them as they try to fit in, try to find their place in society, fulfill and work towards their dreams, have problems and setbacks but lean on each other and get back up to try again. I know that is something I can relate to, and I think you can too. Yes, it is a English language manga (Japanese illustrated book) but my partner who dislikes manga, read and loved both of them, partially because she could use them to explain to me why she stays with me, and WANTS to. So here are the links to Book 1 and Book 2 at the US Amazon site; and Book 1 and Book 2 at the UK site (or you MAY find them at a nearby bookstore).

Translucent is about an eighth grade girl named Shiroyama and a guy who likes her named Tadami. Shiroyama has this new chronic disease called translucent syndrome which makes parts of her (sometimes all of her) literally translucent (or invisible). Through book 1 and book 2 she meets adults who have the same condition and by facing and working through situations and through their advice she struggles to find out what a 'normal' life is like with a chronic condition.

So why I am recommending this series so strongly? Because in these books, the disease 'translucent syndrome' is really a metaphor for any chronic condition and narrated from both her view and the view those around her. The series is able to address not just what it is like both physically and mentally to have a chronic condition in today's society, but also the viewpoint of the caregiver, the friend, and the cost to THEM of seeing the person they care about hurt by society (as well as the rewards they get FROM that relationship).

Shiroyama meets Keiko, an older woman who has advanced stages of the syndrome, who tells her not to delude herself, that she must learn to be independent because if she has a partner, she won't be able to support them as much as she needs support (Keiko's ex-boyfriend feels differently and is constantly trying to convince Keiko otherwise). So now Shiroyama fights with the 'disability guilts' (‘I'll just be a burden') as well as the brutal discrimination from her teachers ("we can't include you . . . what if you become . . . you know . . .").

The second book has Tadami and Shiroyama go on a date and includes some kids staring at Shiroyama's disability and the start of public comments. Tadami steps in and turns things around, showing how he views her and how isn't the syndrome cool! But secretly he has been reading everything he can and as defacto caregiver is becoming worried and obsessed not only about his own helplessness at times but at not knowing enough to make sure he can help Shiroyama (strike any chords with caregivers out there?).

The books regularly include the way that medical treatment, examinations and the entire medical system which has become part of Shiroyama's life. In book two it includes an incident of physician discrimination: where he either doesn't believe her and/or isn't comfortable treating her. It is the inclusion of incidents like this, the REAL LIFE aspect of chronic conditions which make me recommend this series so highly.

So whether you are a teen or an adult with a disability; whether a teen or an adult who is a friend, a partner, a boyfriend, a girlfriend or someone significant in the life of a person with a disability, I recommend you buy and share this series of books. What other books reflect the lives of both the person with disability AND the caregiver/partner/friend; what other books can be read by both people and discussed so the person on each side learns a little more about what it is to be the person on the OTHER side.

So that's it, a little reminder that, yeah, things can suck sometimes, like today when it was found that a nerve cluster on my face had died. I sobbed, and when I kept saying, “My face!” my partner was there to squeeze my hand and say softly, “I know.” But, I can endure it, because I'm not alone.

• Visit Screw Bronze!

Since it seems to be Wheelchair Month here at the Ouch! Blog...

Being pushed is rubbish. Using any kind of wheelchair comes with its frustrations, but having to be pushed in a manual wheelchair is by far the most demoralising mode of getting about that I can imagine (and I'm of the space-hopper generation). Apart from the fact that you become even more ignorable than those who can self-propel, you are acutely aware of the fact that it is a chore for the person pushing; they face all the obstacles one faces with a wheelchair, as well as the physical effort of pushing another person about everywhere.

So unless the person pushing you is being paid to do so, it is very difficult to complain without seeming terribly ungrateful. I shall therefore use this opportunity to tactfully advise PAs, carers and all our kindly vertical friends of

The Six Deadly Sins of Wheelchair-Pushers

1. Sound FX - This is a sin most often committed by those blokish types who feel compelled to accompany the pushing of any wheeled item - a wheelbarrow, a shopping trolley and of course the wheelchair - with "brum brum" car-noises, screeches around corners and so on.

This is usually just annoying, but should you keep shunting me into kerbs and respond with a cheerful "Boiiing!" I may get the impression you are not taking the task very seriously.

2. Rhythm - Some people drum their fingers a lot as a habit whilst thinking, which is completely and utterly harmless until they do it on the handles of the wheelchair. At which point it goes right down my spine and is... nasty. If your pushee complains about this, please take it seriously. It might really hurt.

3. Ambition - If in doubt, go the long way round or don't go at all. My family enjoy the great outdoors and in my time I have been pushed and pulled, dragged and hauled over all manner of inhospitable terrain. Which is usually very uncomfortable, but it is also tremendous hard work for them - work they are happy to do because it must be a great treat for me.

I realise that I have a responsibility to be more assertive about such matters, but still; if it's really hard work for you, it is almost certainly uncomfortable for me.

4. Parking - It really is deeply humiliating to have to be parked outside a place which is inaccessible while the pusher runs an errand within. It is sometimes necessarily I know, but I am not a dog who may be tied to a lamppost. If I must be parked, please consider where I am placed such that I (a) am not in anyone's way and (b) that I am not facing a brick wall. Thanks.

5. Ventriloquism - If you are being pushed, strangers will very frequently address the person pushing you instead of yourself. However, it adds insult to injury when the pusher proceeds to speak for you - or worse, about you - when you are sitting there like a lemon.

6. Aggression - I like pushers who realise that wheelchair-users have just as much a right on the pavement as everyone else, but it is really very embarrassing to be pushed into the backs of people's calves. If people appear to ignore our requests for them to move, I tend to assume that they have some hearing impairment or are slow because of some mobility impairment; ramming me into their legs is unlikely to help any of us.

Of course, there should be seven deadly sins, but I may already have guaranteed being taken for a long stroll along a short pier. Anyone got any nominations for the seventh?

• Visit Diary of a Goldfish

Stares? Yep. No big deal.

Glares? Yep. No big deal.

Being ignored, pushed aside? Annoying, frustrating ... but I can cope.

But hatred. Right out, down deep, fear of violence hatred, that's a different story. On Friday of last weekend I had an encounter with a young man just outside a store where I had shopped. Joe had pulled the car up close to the door (without blocking it) because it was snowy and icy and difficult to maneuver the chair. As I was getting in he came out and began acting in a very hostile, hateful manner. As he advanced towards me, he scared me. I thought he was going to hurt me. It takes a lot to scare me, but he did.

His face did.

His body did.

His hands, which flexed and tightened into white fists, did.

I backed down fast. Knowing animal psychology I didn't look him in the eye. I didn't want that kind of contact, I didn't want to see what was at the back of his eyes, I didn't want to spur him on. I apologized, though I believed I had done nothing wrong. I just wanted to settle him down, get him to back off. He spouted how we 'disabled people' took advantage of our disability, how we used our disability to trample the rights of others, how we saw ourselves as the exception to every rule. He was spitting mad.

After I had backed down, he slowed down, then stopped his advance. He was close enough that I could smell his cologne, see the sweat on his neck and feel the strength of his presence. Then, thankfully, he backed away. On the way back into the store he looked back at me and said "******* cripple"

"Cripple."

I had never been called that word by another before. I've called myself that, always jokingly, I have heard other disabled people use it, always with a wink. But I'd never heard it this way before. A term spat out. Hate curled around the letters and the word for the first time hurt. Really hurt.

I don't know that I can use that word, ever again.

I don't know that I can joke like that, again, when I've heard the word spoken with hatred.

What now?

Do I let him take this from me? Or do I give it willingly? Or will a day or two change my mind.

I don't know.

I'm curious, those of you who use the word 'cripple' ... why? Those of you who don't ... why not?

• Visit Chewing The Fat

Using a wheelchair in my house is a bit like eating custard cream biscuits for breakfast, it is thought to be unhealthy and uncouth. Also they get funny about what it does to the carpets.

I can walk, you see, in a way. Not in a productive way, I can’t carry much besides crutch handles, or stand in the kitchen. The fact it takes me double time to get to my bedroom means the cry of “I forgot what I sodding came up here for” holds a bit more resonance for me than for other absent minded family members. It wastes an entire episode of Hollyoaks for a start.

The importance people place on just the semblance of walking is interesting. That is to say, what we do kinda looks like walking, people will tell us it is walking, sometimes they applaud, I think I got a box of Quality Street off a physio once. But it isn’t walking as they know it.

Humans walk for a reason, they walked to hunt things, gather things, a bit later on they walked to Rome, Yenan and Bristol, as is my understanding. People move not for the sake of moving but to get somewhere, because it puts them in control of their surroundings. That is walking. If you can’t get close to that on two feet you have the right to at least consider four wheels. Failing that, some kind of sedan arrangement would suffice.

When I got my first powerchair (ten years almost to the day) it was the latest in a line of mobility aids, only difference being I thought it was well cool. It was easy for me to associate it with freedom, rather than resignation. Like Kanye West said in that song he ripped from Daft Punk “Better, Faster, Stronger”. Or something,

On a brilliant yellow background, a person in Bozo clown makeup, wearing a big red moustache, aviator sunglasses, leather cap and pants, punches a white gloved fist in the air. Below the image is printed the words 'Normal? Never!'

This past month, I saw the Christmas TV special Rudolph the Red-Nosed Reindeer, watched the Julie Taymor movie Frida (about Mexican artist Frida Kahlo), read Simi Linton’s My Body Politic and hung out with my flamboyant friend Nathalie, who has CP. The link that connects these encounters for me is non-conformity.

We live in a society that pressures individuals to conform and be as close to the dominant paradigm of “normal” as possible. Assimilation into the dominant group’s culture, mores and standards is what is expected of everyone. We’re taught it in schools, in the media and by our peers. The more you stray from “the norm,” the more you feel this pressure. Immigrants, people of colour, queers and people with disabilities feel the full force of this imperative to conform.

Rudolph’s parents try to hide his hideous glowing nose with mud in hopes that he will appear normal. The clay comes off and everyone in the playground is horrified. Rudolph finds a friend in Hermey, the Misfit Elf, who recognizes in him a fellow oddball; however, he doesn’t find acceptance amongst his peers until he becomes useful to them on a foggy night when his nose leads the way for Santa’s sleigh His newfound usefulness enables others to look past his disfigurement. This is his way “in” with the dominant group and away from the misfits and rejects.

A lot of people think this way, both those who are considered “normal” and those who aren’t but wish they were. If someone can prove that they are useful to society, then difference can be ignored: we can “get past” things like race and appearance and ability. A perfect world is one where these things don’t matter.

But to me, that’s not a perfect world, it’s a world where our uniqueness, our individual and collective histories, our distinct experiences are no longer valued. The African-American activist bell hooks talks about each of us existing in our “specificity.” She doesn’t dream of a day when her race won’t matter anymore; rather, she envisions a time when we will be able to acknowledge our connections and similarities and also recognize and celebrate our differences.

My other encounters spoke much more positively to the benefits of not “fitting in:”

Taymor’s Frida highlights how Frida Kahlo fully embodied her uniqueness throughout her life. At a time when Mexican painting favoured the expression of populist social themes with large murals, she chose a personal path and painted small, intense images and explored deeply personal themes. She also refused to conform to the American and European art worlds’ expectations of her. She was flamboyant and loud and outspoken. Frida was an original and never deviated from her unique vision.

In her book, cultural critic and activist Simi Linton writes about some of the absolutely unique people she knows in the disability studies movement. They often have dance parties at their conferences and she writes about the peculiar ways in which many of the dancers move because of their disabilities. Someone without a physical impairment couldn’t move in these inventive, distinctive ways. They stand out, theses dancers, and Linton rejoices in their beauty.

And finally, there’s my friend Nathalie who is proud to be a queer sort of queer, an activist crip and an alternative thinker. Someone who doesn’t fit in and doesn’t want to. She has dyed red hair, wears a leopard skin coat and has an in-your-face presence. She and I don’t want to be like everyone else. We want to be ourselves, our best selves and not bend to other people’s expectations. The last time we had dinner together, we raised a glass to toast weirdoes everywhere.

The way we look or speak or dance, the way we draw or paint or sing might be very different from the norm. There’s beauty there. There’s difference to celebrate and not to hide away or fear. Many of us want nothing more than to assimilate, but I say, “Why be normal?” I don’t want to disappear. I am a part of a community of artists and thinkers who are doing it differently by highlighting diversity. That’s me in the Daddy Bozo photo above. That’s me at my best, I think, when I am loose and expressive. When I don’t give a toss. I just want to say that I’m with the misfits all the way.

• Visit Chronic Holiday and Body of Work

I had a bit of an accident on Tuesday evening dear Ouchers, you may remember me mentioning before that cutting ones toenails is a bit of a marathon effort for me, and involves bringing my foot right up to my face and praying that I don’t lose toes.

Well on Wednesday evening it was nearly a lot worse than that. I made the fatal mistake of attempting to use nail scissors instead of clippers. I managed to severely gash to top of my thumb and was left with a flap of skin hanging off and a deep cut.

As soon as I realised what I had done I made a dash for are bathroom; it’s the next room along from my bedroom so wasn’t to far to go, which was lucky as my thumb was pouring blood. I turned the corner ran in to our bathroom and nearly broke my neck! My dad had left the box for the Christmas tree in the doorway of the bathroom, why? I do not know!

Anyway all this resulted in a trip to my local accident treatment centre (ATC), because of the slice out of my thumb.

So I arrived and got seen really quickly by a nurse practitioner, then it came to the whole medical history bit and I was ready with all my various conditions and details of medications for each etc.

She was amazed ‘you have cataracts?’ ‘You didn’t have implants put in?’ ‘Why where you born with that then?’ ‘You have glaucoma?’… The questions continued.

I did my best to answer all these questions despite the blood pouring out of my thumb.

Next it was bilateral twisted tibia syndrome; I really wish I hadn’t mentioned it. As if the woman wasn’t finding me fascinating enough she was now very interested in me, of course she had never heard of it, so again I explained all my bony oddities and at the end of all this she said ‘can I have a look?’, I moved my thumb in her direction and then realised that she meant the legs.

I did end up getting my thumb steri-stripped back together, and was on my way out when she bumped into another nurse and said ‘bilateral twisted tibia syndrome, you ever heard of it?’ alas I had to explain again.

I seem to have the very strange ability of surprising medical professionals of late, also on Wednesday at a routine check up which was nothing to do with my glaucoma I surprised my GP by informing her that I can monitor my own eye pressure and tell if it is dangerously high by a mixture of symptoms and by the feel of my eye ball. She thought that for someone with my type of glaucoma this was pretty amazing, I don’t really get what’s so special about it, but I suppose it is something I live with so I am very used to.

Then before Christmas I got some very shocking news from the optician, witch quite frankly shocked us both I think. My right eye has improved! For ages I have been going to hospital appointments and telling my consultant that I am really concerned that my right eye, which is the most useless to be quite frank, was getting worse it turns out rather ironically that the reason I cant see is because it has improved!

Perhaps I should change career path and look in to becoming a doctor.

• Visit Diary of a Monkey

Elizabeth’s wheelchair blog yesterday was brilliant; absolutely spot on. I particular identified with her assertion that being in a wheelchair doesn’t mean that you can’t walk but nor does it mean that you are not disabled.

I only use a wheelchair every so often and I am deeply aware of the fact that I should be grateful for that. My wheelie friend usually only accompanies me on shopping trips and other activities where I have to be on my feet for an extended period of time. I’m fortunate enough to be able to get out of my chair in the shops and have a browse at my full height.

Onlookers usually fall into two categories. The first seem to assume I must be faking my need for a wheelchair just in order to procure myself a blue badge space. Blimey! The last time I looked, disabled parking spaces weren’t that desirable. Do they come with a valet service now? The second group seem to think that they’ve witnessed some sort of major miracle! “Oh my word! She was in a wheelchair and now…she’s walking. Call the Pope!” Actually I did once hear of a fellow M.E. sufferer making a pilgrimage to Lourdes one year. She got out of her chair and people had just that reaction. I’m not entirely sure of the total veracity of that story but I like to think that it’s all true!

In a perfect world it would be lovely if everyone knew and acted in accordance with Elizabeth’s wise words. However with that looking rather unlikely, it’s always a good laugh to see just how much you can get away with because you’re in that wheelchair. One of my favourite pastimes is the trying on of hats in department stores. I have no intention of buying a hat. Nor has my partner in crime, my sister. We use our phones to take pictures of ourselves in various outrageous pieces of headwear. We receive plenty of funny/accusing looks from people but strangely enough we’ve never yet been reprimanded.

So guess what? I shall continue to get in and out of my chair at will, continue to get those confused or accusing looks and continue to have a good old giggle whilst doing so.

• Visit Ponderings and Ruminations

I use a manual wheelchair. It has a name. I call it “mine.”

A wheelchair is not an iron prison. I am not ‘confined.’ I am not ‘tragic.’ A wheelchair is not a part of me. A wheelchair is not all I will ever be.

A wheelchair is a mobility device.

A wheelchair does not indicate lack of intelligence. A wheelchair does not mean you need to talk louder at the person in it. Talking to a person in a wheelchair isn’t accomplished by speaking towards the person with them. A wheelchair does not make the person in it naturally good. It does not mean they don’t know how to swear, or that they are patient, gentle or a gift from above.

A wheelchair is a mobility device.

A wheelchair does not mean the person has a spinal cord injury. A wheelchair does not mean there was an “accident.” Just because we are in wheelchairs doesn’t mean we ‘all look alike.’ A wheelchair doesn’t make the person in it sexless. Nor does it make them sexier. A wheelchair does not mean the person using it cannot stand. A wheelchair does not mean the person using it cannot walk.

A wheelchair is a mobility device.

A person in a wheelchair is not a “poor thing.” Because a person in a wheelchair is the height of a child doesn’t mean they are a child, or child-like or like being talked to as a child. A wheelchair does not make the person want to be patted on the head. A wheelchair doesn’t make a person inspirational. A wheelchair doesn’t mean the person is to be pitied.

A wheelchair is a mobility device.

A wheelchair does not mean that the person wants to share their medical history with you. A wheelchair does not automatically make a person any more disabled or less disabled than someone else. A blue stick figure in a wheelchair is a symbol someone made that now everyone uses to mean “disabled” or “handicapped”; that doesn’t mean someone in a wheelchair is special or must park in a blue marked space. There is no “almost” in “wheelchair accessible.” Our society has put a lot of different meanings onto that blue wheelchair sign but at the end of the day....

A wheelchair is a mobility device.

Most able bodied people do not like to stand right beside a person in a wheelchair, I do not know why. Most do not like being passed by a wheelchair. A wheelchair goes faster than a person can walk going downhill. A manual wheelchair goes much, much slower than a person can walk going up an uphill. There isn’t any moral meaning to it: it is the laws of physics and gravity. A person visibly straining to push their wheelchair up a hill isn’t “brave”, “heroic” or “plucky.” They are using a mobility device.

Human legs are more efficient than a wheelchair. Wheelchairs do not go sideways, not even when it is really crowded and people won’t move out of the way. Wheelchairs will sometimes tip over, particularly if there is bad pavement or a bad curb cut. Please do not pull on limbs or yank the person who has fallen. They just fell on cement and they may be injured. They may not want help to get back into their chair. Thank you for caring, but thank you more for listening. A person in a wheelchair has just the same right to choices as anyone else. A wheelchair does not make the person using it any less of an equal person.

A wheelchair is a mobility device.

Do not sit in my wheelchair, even when I am not using it. If someone uses a wheelchair and can move their legs or a leg or part of a leg, this does not mean they are “not disabled”/‘Not a cripple.’ There is no “appropriate” speed for a wheelchair. If you want to push my wheelchair, ask me first: I don’t come up behind you, grab your hips and start pushing you around. Because I am in a wheelchair does not mean I will know another person who you know in a wheelchair. And having to use a wheelchair doesn’t mean ‘your life is over.’ The only thing you know about me when you see me using a wheelchair is that I use a wheelchair, everything else is an assumption.

A wheelchair is a mobility device.

• Visit Screw Bronze!

Christmas is officially over for another year but I could not let it go before telling you all about the alternative nativity I saw at Christ church Gosport.

It was a really nice candle lit service, and very Christmassy but there nativity was not quite the norm, brace yourselves now… the donkey that carried Mary was disabled!

The nativity shared the story about the poor donkey whose name was Twonkey, the wonky donkey. As his name suggests Twonkey was rather wonky, ‘special’ and unwanted by anyone as a direct result of his wonky-ness that was until Joseph who couldn’t afford an un-wonky donkey came and brought him to carry Mary.

The story ended with a lovely example of how whenever Twonkey went wonky Joseph smiled and put him back on the right track.

Twonkey was very a very special donkey and I love him!

I was at the service with my mate Dan and his sister Kerry, Dan is very aware of out little brave special different thing we got going on and so is Kerry. Upon hearing about Twonkey all three of us burst out laughing and it was great!

It’s the perfect example of someone rising above there disability, proving everyone wrong and achieving there goals. I also think it’s amazing that the nativity has become more diverse and the different version made the whole thing a lot lighter.

• Visit Diary of a Monkey