Ā鶹Éē

• Posted by Giraffe-a-licious
• 31 Mar 08, 12:36 PM

Iā€™m frustrated. Not that thatā€™s anything new! I seem to fluctuate wildly between frustration and contentment these days. This week I am mostly being frustrated byā€¦. my inability to travel. I want to go places; see things; meet people; soak up some sun/frolic in snow; experience a different culture; go out for meals; travel on a plane for the first time; I could go on but I expect youā€™ve got the gist of it!

I was having a quiet drink with some friends the other day and we got to talking about going on holiday. They wanted to hire a yacht on the Med for a week or so. Someone asked if I would be up for it. I responded by saying that it sounded like a lovely idea but that, for me at least, it was never going to happen. ā€œWhy not?ā€ was the reply. Oh boy. As a certain Mr Shakespeare once said, ā€œLet me count the ways.ā€ I shanā€™t bore you with them all. In fact, I did the same when answering the question. Rather than get bogged down in the details I simply said that there were a million reasons why I wouldnā€™t be able to manage such a trip. That may have been a slight exaggeration but a million is a nice round number.

The last time that I left the country was just under 5 years ago when we had a family holiday to Northern Brittany. Since then I have invoked the use of Expedia numerous times in order to plan trips that sadly always come to naught. There are always hurdles that I havenā€™t thought of or difficulties Iā€™ve put to the back of my mind. Iā€™m not talking about wild adventures to far flung corners of the earth. Iā€™d just like to see a few European cities or something along those lines. Donā€™t get me wrong, I love Britain. In fact the East Coast is one of my favourite places in the world (albeit my somewhat limited world!). Thereā€™s nothing quite like experiencing sizeable waves hitting the Southwold seafront.

How does everyone else manage it? I guess that my biggest problem is that even once Iā€™ve dealt with all the accessibility problems associated with travelling, Iā€™m absolutely exhausted! It would probably take me the length of the holiday to get over the journey there and ready myself for the journey home. Ah well, I must remember that Iā€™m only 23. Who knows what the future holds? I may yet manage to make that much longed for journey. Until then Iā€™ll just have to make so with my imaginary Expedia-enabled holidays. Never has someone used their website so much and travelled so little!

N.B. It appears that The Bard didnā€™t actually write, ā€œHow do I love thee? Let me count the ways.ā€ But ā€˜as a certain Mr Shakespeare saidā€™ sounds a lot better than ā€˜as a certain Elizabeth Barrett Browning saidā€™. I hope youā€™ll forgive me.

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• What's this?

• Posted by The Goldfish
• 31 Mar 08, 10:56 AM

Recently, in response to the statement that disabled people would get "No Special Treatment", the author of discussed her experiences of being on benefit and wrote of the coming reforms to Incapacity Benefit:

I don't think about what might happen to me if the government's proposed threats/changes actually materialise. I firmly push it to the back of my mind, burying it as deep as I can so not to be overwhelmed by panic and fear about a situation I can do nothing about.. [...] The kind of fear that is hard to describe. The type that sits, deep in the pit of your stomach and travels up in to your throat where if you let it it will clench it's fist and take hold starving you of breath.

A lot of people seem to be similarly afraid. Over at the Ouch Messageboard there have been a number of threads about the new benefit, which will eventually replace Incapacity Benefit. There will be two categories of claimant to ESA, those unemployed disabled people who need a extra help and support to get them back to work (the "Employment" category) and those whose impairments mean that they are unable to work (the "Support" category).

There's nothing wrong with these reforms in principle. The trouble is with the rhetoric. All the press coverage has been about getting people off their backsides and the politicians have done no better, trotting out all those familiar . Anne McGuire reckons that just will belong to the "Support Group" of the new benefit, i.e. people who are not expected to take part in work-related activities, an estimate which strikes me as very low indeed. That would be about 600,000 people, a figure lower than the number of people on Invalidity Benefit in 1980, at a time when we had a lower population, lower life expectancy (much lower for people with certain impairments) and far fewer women having paid sufficient National Insurance contributions. This is blue skies thinking through rose-tinted spectacles.

But am I afraid? Well a bit. However, the worst thing that could happen to me is if it was thought I might be able to work. But even then, I would struggle a great deal even to attend "work-based activities" and no sensible employer would look twice at me. They're not going to drag anyone from our beds and chain us up in call-centres, applying red hot pokers should anyone doze off. Nobody, disabled or otherwise, can actually be forced to work. All we can be subjected to is yet more hassle and insecurity - not good, but not disasterous.

Perhaps most importantly, the political success of Employment Support Allowance depends on a decent turn-around of people in the "Employment" category. The government need to be able to say that they've got X number of disabled people, or X percent of the people in this category, back into work. Since many employers are reluctant to take disabled people on as it is, either having the wrong people in this category or failing to provide them with the right help and support will make for some very uncomfortable statistics.

What's more, however angry people feel about scroungers, most people object to the idea of sick people being bullied by government agencies.

Therefore, the proportion of people in the "Support Group" will only remain low if the aims of ESA are actually successful. And, if they are successful, then nobody will have anything to complain about; a load of disabled people will be in work who wouldn't be otherwise, and those of us who are more ornamental than functional will get a bit more cash. Plus, the political need to make ESA work will hopefully make the government apply a great deal more pressure to employers who don't take access seriously and fail to consider disabled candidates, thus benefiting all disabled people, including those who were never on Incapacity Benefit.

I've got nothing good to say about the government's handling of the reform; the careless words of politicians and dubiously qualified "advisers" have caused incalculable harm, raising the suspicion and mistrust of disabled people and making scapegoats of some of the most vulnerable people in society. However, ESA might actually be quite a good idea.

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• What's this?

• Posted by Elizabeth McClung
• 30 Mar 08, 09:10 AM

When I was in the ER last week, the heart and autonomic specialist told me something important: there was what he COULD tell me about my condition, and there was what ONLY I, through trial and error (or the experiences of living the disability) would know about my condition. Or to put another way, while a doctor or even a specialist might be knowledgeable about a disease or disability, even YOUR specific clinical condition, they will never be as expert as you in the conditions of your life. Why? Because the manifestations of the ways the body, much like humans, seem all a little different, a little unique.

I have found that the specialists I trust are the ones who are always ready to be amazed. They donā€™t need to wait until conference papers PROVE there are four types of MS, or that there are still cases that donā€™t fit into those models of MS. The ones I distrust are ones who, without even hearing me out, already assume that they are the holder of all knowledge and that my sentient awareness is secondary to the battery of tests they are going to order. I am thinking of one specialist who is ordering my test for orthostatic hypotension. She is doing this AFTER four other specialists and three GP have PROVED I have orthostatic hypotension (one even made a graph with times and blood pressure readings). She's doing it even after she tested me herself and put in her official report that I have orthostatic hypotension. Yet, due to my autonomic system failure, the orthostatic hypotension canā€™t be treatedā€¦..but she is determined.

I sat and asked my neurological specialist two questions (and recorded the answers): 1) When do you expect to finish your diagnostic testing? Answer: Two additional years (beyond the 14 months so far). And 2) When do you expect to begin treatment? Answer: There IS no treatment.

Now, while my story seems a bit down the rabbit hole with Alice in Wonderland, there is a point. I have, in just the last year seen many friends diagnosed definitively with diseases, usually neuro ones, and then, sometimes months, but sometimes YEARS later, been told, just as definitively, ā€œNo, you donā€™t have THAT condition.ā€ On the site Patients Like Me, people often put their diagnosisā€™ next to the years which they received them. So it is 1999-2003 ā€“ MS; 2003-2005 Parkinsonā€™s; 2005-2007 autoimmune neuropothy; 2008 ā€“ unknown. Many doctors refer to patients negatively as ā€œgooglersā€ and see no point in groups like Patients Like Me. They see them as places which only encourage people to exaggerate symptoms and ignore the REAL knowledge: the doctors.

I joined Patients Like Me after 9 months of specialists and doctors where I was only told what I did NOT have, and that they not I, would determine what was or was not important. During the summer ambulances took me to hospital about every three weeks due to heat intolerance. Yet no doctor or specialist cared about the heat intolerance. I did not have MS, therefore, heat intolerance was some inexplicable condition (perhaps one induced by the typical hysterics of a female?) and of no diagnostic interest. Except it completely dominated my quality of life. And by joining Patients Like Me I could find what no doctor had said; that I was not alone. That other people had symptoms like mine. And maybe they didnā€™t exactly match and maybe we didnā€™t have the same condition but they existed; they knew what extreme heat intolerance (or other symptoms) felt like; what effect they had on lives. The one thing my doctors didnā€™t seem to want to know.

Finally, I found a GP who said, ā€œTreatment of chronic conditions is a partnership between patient and doctor and has been for a couple decades. Sadly many of my colleagues donā€™t seem aware of that.ā€ When I bring in medical journals or point out issues that have effect in my daily living, he thanks me. He tries to find medications to help me where I am, but his greatest frustration is his need for the assistance of specialists, some of which are off on their grail hunt. One such neurologist, who will not return his calls nor those of a consulting neurologist for months, continues in her belief that her initial ā€œ20 minute assessmentā€ must be correct. And as MRIā€™s, the nerve conduction tests, blood-work, and even tests she does with her own hands, show dying neural systems, she continues to explain them away like the statement. ā€œMany healthy people have dropsy in the face.ā€ She orders more tests, and reorders the tests after seeing results (that my spine AND all limbs are demyelinating) for one reason: On first seeing me, she said ā€œthere is nothing medically wrong with your neural network.ā€ On and onā€¦.until I ended in the ER.

And there, assessed by this expert, who simply looked at me and my oxy saturation and heart monitor and talked to me about what I knew, from my GP, to other specialists. And after explaining that ER specialists do not START long term follow-up treatment, he did just that, in order to improve my quality of life. Because no one else had, in their diagnostic obsession, when they should have months ago.

While this is my story, I am sure that other people can relate to aspects of it. And so, I want to repeat the ER specialistā€™s message. He told me I was the expert of MY condition and I needed to know that because it was through trial and error (as well as often demanding this or that treatment) that I would find the way to best preserve my quality of life. So, yes, sometimes the occupational therapist, the physical therapist, the doctor or the specialist IS NOT LISTENING. And they hold you up to a statistic they learned X years ago and then tell you how you SHOULD be, from what activity level you ā€˜shouldā€™ be at or working towards to what symptoms or pain levels you ā€˜shouldā€™ be displaying. Hearing that is frustrating and demoralizing and has reduced me to tears.

But unless they can improve my quality of life, what use are they? And how will they do that unless they start listening?

I wrote this because I did not want someone else to feel what I felt for most of a year: alone. I ask that if you can relate, please share your story too, so that others can identify with it as well.

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• What's this?

• Posted by Elizabeth McClung
• 20 Mar 08, 05:37 AM

I was in the emergency room because of heart erratics, stopped beats, double beats and P.A.T.ā€™s, and after a couple weeks, I gave up and came in. Also when I figured out if I was missing an average of one heartbeat in thirteen, how many more could I afford to miss? So now, 3:00 in the afternoon, and I was hooked up to every monitor possible as my torso jerked a couples times a minute, when the heart double kicked after a missing heartbeat. It hurt.

A woman in scrubs came in and asked, ā€œOn a scale of 1 to 10, how would you rate this pain?ā€

I thought a few moments about the last 16 months and everything that happened and I started laughing (when I wasnā€™t saying, ā€œOwā€). Rate the pain? Well, there was the time I ripped over 25 muscles along my rib cages and my upper torso muscles went into spasm. Linda and my care worker had to hold me down while I screamed until the opiates kicked in. Would that be an 8? And the pain level where I start hallucinating is below that, so is that a 6 or a 6.5?

ā€œI guess a three or four.ā€ I said.

My partner Linda wanted to smack me upside the head but waited till the woman left. ā€œNext time you tell them ā€˜12ā€™,ā€ she hissed at me.

ā€œButā€¦butā€¦I have had a lot of extreme pain.ā€

ā€œThen,ā€ she said, ā€œyou say, if getting a needle into the roof of your mouth is a 10 the pain you are getting is a 9.ā€

Later after being displayed, prescribed and discharged, I kept thinking about the ā€œ10 point scale.ā€ How differently would I have rated my chest pain a few years ago? Probably an 8. How useful then is this scale for people who have/continue to experience chronic conditions, relative to the average person who walks into the ER? So I had two female EMTā€™s over, both with severe chronic pain conditions, and we talked about this ā€œ10 point scale.ā€

The consensus was that until we experienced our condition we ā€œthoughtā€ we knew all about pain. But how quickly chronic or disabling conditions turn that scale upside down. Because over time, we will experience ā€˜incidencesā€™ or ā€˜flare upsā€™ which while turning your face white and making your hands tremble with pain, doesnā€™t actually stop you reading or responding to emails (ā€œIf I stopped EVERY time I was in pain, nothing would get done!ā€) And how, now, in an odd benefit, what most people consider a ā€œ10ā€ on the pain scale is sometimes just part of the ā€˜new ordinary.ā€™

One EMT talked about a call-out she did where part of her finger was severed and how, being in a rural location, after icing her hand and the ā€œfingerā€ she just had to sit there in hospital, without medication as the shock wore off. Because first they had to FIND the doctor who ā€˜mightā€™ be able to sew it back on, then HE had to find a babysitter for the kids, and he wouldnā€™t leave until the babysitter arrived.

So 45 minutes later this EMT was sitting there holding her finger. And one thought she had while waiting was ā€œIā€™m actually grateful I have cluster migraines.ā€ Sheā€™s had headaches so bad that in a dark room, inside a shut walk-in closet, with a blanket over her head, it was still ā€˜too brightā€™ to decrease her pain. She said that level of pain helped her keep sitting calmly while others would be screaming.

How does a person with years of acute arthritis starting in childhood rate pain with the ā€œOut of 10ā€ scale? How does someone with EDS who has had dozens of dislocations? Or someone with Fibro with days they canā€™t get out of bed?

The people I talked to fell into two groups. Those of us (including me) who NEVER give anything a 10, simply because, after so many times of thinking ā€œIt can never be more painful than thisā€ something else always pops up. So, for ME, if ā€œHaving my body sucked through a drinking straw by a black holeā€ is 10, then having a nerve conduction test isā€¦.ā€

The second group says that any time the pain drives you to the point of loss of sanity (however temporary), that counts as a 10 (or beyond). That seems reasonable to me too. Since I have said (more than once) to my night worker, ā€œI canā€™t sleep unless I relax, and once I relax ALL the pain will come in and I will not be sane anymore, but hopefully the sedatives will kick in soonā€¦.okay, here I goā€¦.ā€ The next day she said I did manage to sleep after talking to people who werenā€™t there and yelling things that made no sense.

Back in the ER, after the ā€œ1 to 10ā€ woman I had a pedantic female nurse come in to ask, ā€œCan you PRECISELY describe your pain?ā€

I said, ā€œSomeone is reaching into my chest, grabbing my heart, pulling it out through my ribs, and once six inches clear letting it snap back with a resounding whack!ā€

The nurse looked irked, ā€œI said, a PRECISE description.ā€ PAUSE ā€œDo you want me to put that down as ā€˜burningā€™ or ā€˜throbbingā€™?ā€

I said, ā€œHow about getting kicked by a horse in my sternum every 13 or so heartbeats.ā€

She glared at me, ā€œIā€™ll put that down as ā€˜burningā€™ā€ and swept out of the curtained areas with an aura which blared: ā€œSOME people!ā€

I think as PWDā€™s, we have a different, and sometimes very individualistic view of pain. So, I guess the question is, how DO you measure pain? Do you have two scales: one for things inside of your condition and another for that not? As, for example, after having amputated limb nerve pain, how does a hammer to the thumb rate on the pain scale? Should there be a scale for people without disabilities and one for each disability?

Because I do find myself saying things like, ā€œOh, thank god, itā€™s only food poisoning!ā€ That is only odd until you know my condition causes hours of intestinal cramps with NO reason (see, food poisoning actually ends).

Soā€¦.tell me your pain?

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• What's this?

• Posted by Giraffe-a-licious
• 17 Mar 08, 11:39 AM

I love sport. Iā€™m well aware of the irony in that; the girl that canā€™t play sport adores it. I suppose it could even be deemed tragic had this love of all things competitive been in place before the onset of M.E. Strangely though, it wasnā€™t. Pre-M.E. I hated physical exercise as much as the next scrawny, unfit 12 year-old. I might have watched a bit of Wimbledon but that was pretty much it when it came to following sport. However since my enforced stint of time pretty much super-glued to the sofa, Iā€™ve become the true definition of an armchair fan. You name it, Iā€™ll watch it ā€“ rugby, tennis, football, snooker, bowls, ice skating, motorsport, darts, anything bar horse racing.

I was prompted into thinking about this again having watched all 6 and a half hours of Sport Relief on Friday night (please believe me when I say that I didnā€™t intend to watch the whole thing, it just sort of happened, as these things are wont to do! For the record my favourite moments were Ray Stubbs and James Toseland as The Blues Brothers and the boxing match between Lemar and Ben Shepherd). Watching so much sport-related fun had two contrasting effects on me. Firstly I was delighted to see sport making a difference, not only to the lives of those being helped by the money raised, but also to the general public who has got off their butts to do something great as a community. Unfortunately my all too familiar second feeling was that of frustration at my inability to do anything similar and at the lack of enthusiasm that I had for sport before I became ill. I know that I was only young but I feel as though I wasted those years.

Despite these frustrations sport still gives me a heck of a lot. I donā€™t think Iā€™ve ever been more excited in my life than when watching England win the Rugby World Cup in 2003! Watching Kelly Holmes and the menā€™s 4x100m relay team win their gold medals at the Athens Olympics was absolutely thrilling. Sport gets me even when Brits arenā€™t involved. I remember vividly the 2001 Wimbledon final between Pat Rafter and Goran Ivanisevic. What a match!

My sporting motto? If you canā€™t join 'em, watch 'em!

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• What's this?

• Posted by Bipolar Works
• 16 Mar 08, 04:28 PM

Sometimes I have days when a black mood takes over and I just canā€™t seem to shift it, whatever the weather, rain or shine. It doesnā€™t help to have an infinite visual imagination that pervades through even the most rock solid evidence based logic. If my mind is made up that Iā€™m going to have a negative thinking day, then nothing can stop it, not even the brightest sunshine outside.

Even so, I have become an expert at hiding this through years of practice. I have learnt to smile through the most difficult situations, and negotiate persistently for my point of view, taking risks in the process, in the most difficult of circumstances.

You can put obstacles in my path ā€“ lock me away, restrict my activities, force me to take powerful antipsychotic drugs, throw out my job applications due to discrimination, unfairly load my insurance premiums, produce a miscellany of objects: horses, sheep, bulls, cows, walls, trees, mountains, rivers, and oceans to fall over and drown in but I have learnt from experience that inevitably and reassuringly I will always find a way through it all and come out right on top at the end of the day. I have done so far.

The saying goes ā€œyou canā€™t get blood out of a stoneā€, but I donā€™t believe that. There is always a solution just around the corner, just at the point when you thought that there was nothing else to try. Given the opportunity, we can all achieve incredible things, through self-belief and support from others.

It doesnā€™t pay to fortune tell, as there may be nothing in it. Hiding away from the world doesn't achieve anything either. Better to keep building skills and experience as evidence of sustainable recovery, stability and success from wherever you are at the moment, and eventually dogged persistence will lead you towards the light at the end of the tunnel. You don't know how far you can go until you try.

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• What's this?

• Posted by Jemma Brown
• 16 Mar 08, 04:26 PM

New research out suggests that one in five school children are showing signs of learning disability and 55% of children ā€˜failingā€™ their SATā€™s are showing ā€˜ā€™.

This story caught my slightly spastic eye mainly because I did reasonably OK in my SATā€™s exams considering the majority of them were not in an alternative format and for the majority I received no extra time allowance.

I really hope this is something that has changed now. back then roughly a decade ago when I took my year 6 SATā€™s my biggest worries about them was how much my back was going to hurt after spending too much time with my face mere centimetres away from the desk trying to read the standard size print and whether I managed to finish.

Also there is a huge amount of controversy as to whether I am dyslexic or not, letā€™s get things straight I have never actually been tested.

Throughout my school education I was informed that my lack of understanding when it came to English and my complete inability to spell was because I am partially sighted. Even now at college level I am told that my issues with spelling and proof reading my work are because of my visual impairment; they put it down to my inability to recognise word patterns, this however does not explain my complete inability to remember what someone asked me to do 5 seconds ago or my complete and utter lack of any form of organisation.

I have even in my time been told itā€™s not possible to be VI and dyslexic; itā€™s not possible to test someone who is VI for dyslexia.

This is complete rubbish it is apparently a little bit trickier to test someone who is VI but it is possible.

My parents were so frustrated with being fobbed off by schools and colleges that they once rang the to get the record set straight, and the RNIB confirmed that it is possible to be VI and dyslexic, Hurrah! but still no one would test me.

Now Dave is blind and dyslexic and I have several other friends and acquaintances that are.

It really makes me wonder what other people are going through. I cannot be the only disabled person in this situation struggling to get recognition for an additional issue, I worry that professionals see disabled children as having one disability and blame that for any other problem that occurs. Yes visual impairment does cause a few problems when trying to learn things like shape and distance but cannot necessarily take all the blame with other things I find difficult to learn.

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• What's this?

• Posted by Vaughan
• 14 Mar 08, 03:01 PM

With so many programmes across TV and radio, it's difficult to know what's worth catching and what's worth missing. Fortunately, this latest recommendation comes from the Ouch team's very own Emma, who has been listening to today's (Friday) Afternoon Play on Ā鶹Éē Radio 4 whilst she's off on leave from sunny Ā鶹Éē Towers. Things To Do Before You Die is about a 15-year-old boy with terminal cancer, whose dying wish is for what most boys his age want - to lose his virginity. And even though, at the time of writing, you've missed this drama, thanks to the 'Listen Again' feature it's available for you to hear at your own convenience for the next seven days - right here.

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• What's this?

• Posted by The Goldfish
• 14 Mar 08, 01:59 PM

I wasn't going to write about this, but then I read one too many news stories and lost my temper.

Controversy has erupted over... well look, the thing that controversy has erupted over is quite different from the story that all the papers are running, which is about a deaf couple who want the opportunity to choose a deaf child through IVF. In fact, what this couple seem to have been trying to do is simply object to the which makes it illegal to implant a "deaf" embryo when a "hearing" one is available. Ouch has a transcript of the Today Programme interview with deaf activist Tomato Lichy (what a name!) who, together with his partner, have raised this issue.

Of course, rather than focusing on the law and its implications, the news stories are all about this couple, with headlines such as .

Most often, debates around reproductive technology are concerned with limiting the power of prospective parents to discriminate between different sorts of children they may or may not want to have. For example, the same bill enshrines the ban on selecting embryos of a particular sex for non-medical reasons. However, this part of the bill is actually enforcing discrimination. When someone has a natural pregnancy, they can choose whether or not to have the available scans and, if the results show something up, they can choose how to proceed. But if a couple who were likely to have a deaf child naturally had to go through IVF, the law now dictates that their child will be hearing.

I have been slightly irritated by the suggestion that deaf children are being destroyed by this; lots and lots of potential people are created and discarded and most cycles of IVF fail in any case. However, the greatest mistake that I keep seeing and hearing on this matter is the idea that choosing an embryo with genetic deafness (or any other genetic impairment) is inflicting something onto the unborn child.

The only thing that can currently be inflicted upon any embryo is life. Life with whatever combination of genes that particular embryo happens to have.

In reality, this law is only likely to effect a very small number of people. Very few people would share the desires of Mr Lichy and his partner, who are not even undergoing IVF at this time. However, there's no way that we can interpret such laws as implying anything else but that life with an impairment is less valuable than one without. What's more, this law supports the dangerous myth that disability is something that can be tackled with reproductive technology. This myth not only hinders our progress towards equality, but misleads well-intentioned prospective parents.

For a start, very few of disabled people have any kind of genetic "defect" which can currently be screened out at embryo stage. All but a handful of pregnancies are conceived through the icky sticky method anyway, far from the dignity and precision of a laboratory. A handful of impairments can then be looked for during pregnancy, but the vast majority of congenital impairments are not evident until after birth, and possibly not for months or years to come. What's more, the vast majority of disabled people were not born with our impairments at all. The world is a dangerous place and the human condition is frailty.

In other words, all the available technologies, including the ordeal of late termination, only reduce one's chances of having a disabled child by a tiny fraction. We need to see disability as an issue that can be addressed by social change, not as a problem that can ever be eliminated with reproductive technology.

I wrote two longer blog-posts about reproductive technology and disability a while back over at my own blog and in case anyone's interested.

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• What's this?

• Posted by Seahorse
• 11 Mar 08, 12:08 PM

Okay. I'm disabled, I have a son, and I don't believe in the word 'special' when talking about people with disabilities.

Unfortunately my son attends a school where preferential treatment is frequently dished out to kids with 'special' needs. The word 'special' is plastered all over the minibus. The treatment is ā€˜specialā€™ because the kids are ā€˜specialā€™. Sometimes special treatment is used as a means to contain challenging behaviour. Surely thatā€™s wrong?

The school's tendency to, at times, openly favour disabled kidsā€™ efforts over and above the efforts of non-disabled kids causes resentment and confusion among all concerned and also ultimately damages the children with disabilities.

Do they need to be singled out for pity or special treatment? No. Do they need resentment channelled at them when itā€™s not their actions but those of the teachers that has caused friction? Absolutely not.

And yet these kids are 'allowed' to win sports events and talent contests, all in the spirit of 'inclusion'. And every time this happens, the children without disabilities take note.

It's a policy that has gone so badly wrong that my son actually suggested sending kids with behavioural or learning disabilities to 'special' school. Remember, this is a child with a disabled mother who has behavioural, neurological and physical disabilities. What really threw me was that he not only wanted disabled children out, but made a distinction between certain types of disability. To him, it seemed okay to allow the kids in wheelchairs, the physically disabled, to stay. It was as if they were seen as alright because they didnā€™t cause the problems the other ā€˜difficultā€™ kids caused.

Boy have I had my work cut out trying to deconstruct the school's misguided policy. I explained to him it's the teachers, not the kids with disabilities that are causing the resentment, and that no, absolutely no way is it right to segregate.

We talked about all sorts of scenarios where being disabled and not being disabled just shouldnā€™t be an issue. Sport seemed to cause the most prolonged debate. He believes any Olympic athletes with disabilities using those ā€˜super legsā€™ should be in their own event. I disagreed, explaining that uniting disabled and non-disabled athletes at the Olympics was a really important thing. We did agree that if it could be scientifically proven that the ā€˜super legsā€™ give an unfair advantage, perhaps they could be modified to ā€˜un-superā€™ them and bring them back to the performance level of the non-disabled athletes. Then we may have an Olympics where no one gets singled out, whether they are outperforming or ā€˜trying their bestā€™ and winning medals for being brave, which is what seems to be happening at school.

I told him the words special and normal are to be avoided in our discussions about disability. I am trying to encourage him not only to think about what it means to be disabled, but also what it means to live alongside someone who is disabled when you are not. I want to nurture in him a naturally inclusive nature that will mean he doesnā€™t need to refer to policies or political correctness when faced with somebody portrayed as different from himself. Itā€™s how he reacts as an individual to an individual that is important.

This week is the first week I have picked him up from school using my recently purchased mobility scooter. It's been momentous, liberating, frightening, and now confusing. Going public with my invisible disability and hitting a major disability issue within school all at once has done my head in.

There are many parents who campaign to have a choice between their local primary and provision for children with disabilities. Parents who feel they have no choice, who feel their children suffer in ā€˜mainstreamā€™ schools. I can understand why they campaign. When things arenā€™t managed well, it can be disastrous for their child. But good, clear, effective management is achievable.

I still believe in inclusion. Just not 'inclusion' as in inclusion with 'special' emphasis. Emphasis that casts a spotlight where it can only put children with disabilities under a glare that causes suffering, misunderstanding and further division. And that's the last thing that should be happening when disabled and non-disabled children are being taught alongside each other.

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• What's this?

• Posted by Giraffe-a-licious
• 10 Mar 08, 01:59 PM

Iā€™ve been rather pondering a particular topic rather deeply recently. Whatā€™s the difference between happiness and contentedness? Iā€™m pretty sure theyā€™re not the same thing. Similar? Yes. The same? No. One of my biggest aims in life is simply to be content. Obviously happiness is also desirable but I donā€™t think that you can very well be happy all the time. But contentedness seems more reachable.

The Merriam-Webster online dictionary defines contented as: ā€˜feeling or showing satisfaction with one's possessions, status, or situationā€™. That sounds pretty accurate to me. So how do we go about trying to be content when our possessions, status and situation are in a pretty miserable state?

Iā€™m going to skim over the possessions aspect of this question. Iā€™m fortunate enough to not be wanting in that respect. Iā€™m no Bill Gates but materially, for the moment at least, I have everything I need to get by. Status and situation are a different kettle of fish. Iā€™m not actually entirely sure of the distinction between status and situation! There must be some technical difference but for these purposes Iā€™m going to treat them as one and the same.

Iā€™m at my most content when the status quo is preserved; when my health is at the level that Iā€™m used to and I can operate at my usual pace. I might not be incredibly happy but I can be content; grateful for what I can do and accepting of the things I canā€™t. Itā€™s a peaceful state of mind to be in but all too often events conspire to turn my contentedness into frustration. Dissatisfaction is a simple human failing, but one that if eradicated would make the world a much nicer place! These days weā€™re constantly being told than we deserve this and that. We have rights not privileges. The good things in our lives are not blessings; they are merely what we are entitled to. Living with this attitude means that contentment is near impossible. I find that gratitude is essential to contentedness. I must be thankful for what I have. Yes, of course Iā€™m going to get angry at times and rail against the restrictions that are imposed on me by my illness. And believe me, I can rant and rave with the best of them. But if Iā€™m never grateful for the things that I am fortunate enough to have then Iā€™ll never be content. I might be happy from time to time, but never content.

Iā€™d be interested to know the views of others on this. Iā€™m a Christian and I wonder if perhaps Iā€™m able to be more content because of my belief that Iā€™m only going to have to deal with this messed up body of mine for a relatively short period of time. I have an eternal, heavenly destination to look forward to. What about those who donā€™t share my beliefs? In short, how does each of us find contentment?

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• Posted by Damon Rose
• 7 Mar 08, 02:16 PM

Ouch's latest podcast is out now to go and download, add to your MP3 player, eat or whatever you want to do with it.

This month, Mat Fraser and Rob Crossan are stuck in London, studiobound (like wheelchairbound but different) whereas Liz (ironically a wheelchair user) is in Australia, challenging her little body to the max and attempting to present to the best of her abilities.

Meet disabled Aussie comedian Steady Eddy, hear Liz and Rob fight it out over UK/Oz disability newspaper stories and guess what's wrong with our contestant in our renamed quiz Vegemite Vegemite or Vegemite.

Our podcast has moved. It's now part of the Ā鶹Éē's full Podcast offering and now lives here: Ouch on Ā鶹Éē Podcast pages.

And you can read the transcript too.

Great bit of video here. Mat Fraser got all confused about how Liz in Sydney was already into Tuesday while he was still in Monday back in the UK. Is she a time traveller?

See all videos from this months podcast on our and photos on our .

READ ON IF YOU HAVEN'T UNDERSTOOD A WORD I'VE SAID SO FAR ...

For the uninitiated, or un-techie, a podcast is a radio talk show that you can download and listen to. Don't get put off by this stupid 21st century word 'podcast'. Think of it as the Home Service online, or Tony Blackburn's breakfast show - actually don't. It's frequently funny, oftentimes a little dark, and we always say it's disability like how disabled people talk about it down the pub. Post whinge, post rant, it's actually quite entertaining even if we say so ourselves. I won't mention the awards again but it's like dead good.

The podcast appears monthly.

Listen to all past shows here.

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• Posted by Dave Hingsburger
• 6 Mar 08, 04:23 PM

They are able because they think they are able.

Thus says Virgil.

Now I don't really know the classics but I know that's a name that I should know. I was doing some research on disability here at the office and I came across this quote and for some reason it really, really annoyed me. Where does he get off? I get tired of this kind of 'positive thinking' creates a 'positive world' and 'negative thinking creates ... well, me and my disabled body.'

I am disabled because I am disabled. Now this doesn't mean that I'm not 'able' in other ways. Although I hate the 'differently abled' kind of language that was popular a while back, I do not deny that I have abilities but I don't deny my disability either. As positive as I am, as positive as I can be - I still can't walk well. I still fall over.

I had a friend once who was facing a serious illness and a tough set of operations - along with the possibility of permanent disability. She was driven mad by people telling her not to have 'negative thoughts' and even madder by those who suggested that it was her negativity that had brought on the illness and would create the disability. What horse feathers! What snake oil. How dare someone suggest that illness, or disability has any connection at all with how one thinks! Isn't this just dressing up sin in sheeps clothing. You are disabled because of a inherent personal flaw ... oops I had a negative thought and my left leg dropped off.

Are you allowed to say, "Perfiffle" on a Ā鶹Éē site?

Listen up Virgil - I'm having a happy day today and I still can't walk.

Sorry to disappoint you.

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• Posted by Giraffe-a-licious
• 3 Mar 08, 11:30 AM

I have to admit, Iā€™m a bit of a hoarder. I blame it on genetics. My grandma was the queen of hoarding. My bedroom is, shall we say, a little cluttered. Itā€™s not really surprising when you consider that Iā€™ve been living in it for nigh on 18 years. I still love it though. It says so much about me. For one thing it is jam-packed full of giraffes! I donā€™t think thereā€™s anything wrong with that type of stock-piling. It makes my room cosy and reassuring. But there is a slightly less healthy side of hoarding. Itā€™s probably best illustrated by my unwillingness to get rid of my violin.

I started playing the violin when I was roughly 9 years old. I shudder to think of the pain that I put my poor parentsā€™ ears through, but by the time I reached 13 I could play fairly decently (I canā€™t remember if I got to Grade 3 or 4, but it was about that level). I enjoyed it immensely. I was always quite a musical kid and I loved playing in the school orchestra (where my mistakes werenā€™t so obvious!). Then along came the M.E. and I couldnā€™t even hold the violin in place long enough to use it. Thatā€™s been the case for 10 years now and yet my much-loved violin is still in the back of the wardrobe in our spare room. I just canā€™t bring myself to part with it. I suppose that ultimately itā€™s a fairly harmless thing to hang on to. But it is perhaps symptomatic of an unwillingness to move on and accept that Iā€™ll never play it again. On the other hand maybe itā€™s a symbol of the hope that I have, that one day I might be well enough to start again. Iā€™m not sure, but either way I have a feeling that the poor little un-played instrument is still going to be living in that wardrobe for a few years to come.

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• What's this?

• Posted by Vaughan
• 3 Mar 08, 10:40 AM

With all the publicity surrounding the Ā鶹Éē's iPlayer service - the new way to catch up with Ā鶹Éē programmes from the last seven days that you've missed or want to watch again - if you're deaf or hard of hearing (and even if you're not), you might reasonably have been wondering "What about subtitles?"

When the iPlayer launched at Christmas, there were a number of criticisms levelled at the Ā鶹Éē concerning the fact that subtitles weren't being made available on the service at the same time. It seemed that technology problems were to blame, and now testing of a new system for providing subtitles is under way, with the hope that they will be launched for downloads by the end of March. Subtitles for streams are then planned for the end of May.

Head over to the Ā鶹Éē Internet Blog, where Jonathan Hassell, the Acting Head of Audience Experience & Usability, explains more.

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