Tag Archives: CP

Adversity, Misconception and Disability Chic

A few weeks ago I ventured out to my local cinema to watch ‘The Theory of Everything’. This was the amazing film about the life of professor Stephen Hawking, the world renowned physicist and cosmologist. As well as his intellect he is perhaps, the most well known sufferer of Motor Neurone Disease. He was originally given a life expectancy of two years, however he defied the odds and has survived many decades longer than predicted, making major discoveries and contributions to the word of science and to the layman’s understanding of it.

Growing up when I did role models with disabilities were thin on the ground, the few there were only had connections to sport. I did my fair share of physical activity as a child I swam and was a keen rider having regular sessions with the Riding for the Disabled Association via my school and private lessons at home. It was only recently when researching an academic project that I discovered horse-back therapy, or hippotherapy, is a clinically recognised therapeutic intervention. The name has Greek roots, ‘hippo’ meaning ‘horse’ and ‘therapy’ meaning to ‘treat medically’. My support worker and I had thought it was a spelling error! This therapy has been shown to promote physical development, speech and confidence in individuals with disabilities.

Looking back, I don’t think I aspired to be successful on horseback in any kind of conventional, competitive sense. For for me it was an odd kind of escapism, these activities assumed an almost hedonistic quality. The hours swimming and riding were like a window on another life. I loved that I didn’t look “disabled” when I did them. Just as today I sometimes lie on my bed in an outfit to get an idea of what I would look like standing up and enjoy the appearance of my washboard stomach, only to have it disappear (somewhat depressingly) when I sit up again.

I saw wheelchair sports as negative. I had been raised to believe the wheelchair had too many connotations of ‘laziness’ and ‘giving up’, for it to become part of a leisure activity or a positive tool to allow me to achieve. Society has certainly come a long way in the last 20 years or so, at least I thought it had until I picked up a newspaper and read the story of 12 year old Joe France who was denied entry to the Hawking film because it wasn’t being shown on any of the screens he could access. Ironically, this incident coincided with Disabled Access Day.

It saddens me greatly that situations like this are still impacting on the lives of individuals, a generation after legal measures aimed to make such experiences a thing of the past. This is also following a period in which Motor Neurone Disease has seen a massive increase in public awareness as a result of the ice bucket challenge. For the uninitiated this was a charitable craze that went positively viral, it involved individuals pouring buckets of ice water over themselves with the aim of raising money for Motor Neurone Disease. Participating individuals filmed this activity posting their endeavours on social networking sites such as Facebook and YouTube.

An article in ‘Society Now’ describes the craze as narcissism dressed up as altruism, and questions the motives of those taking part and the effect of these crazes on societal giving. They point out that when one cause is in vogue others lose out by default, not just in the financial sense but in the social sense as some causes cannot hope to capture the public’s imagination. Dyslexia is one, as is the needs of adults with Cerebral Palsy; we are not cuddly, sweet or life-limited. We struggle on with all the appeal of an elderly dog in a shelter waiting and hoping for someone to notice we are there.

For me the solution is to adopt the US attitude towards disability, to celebrate it and support the individual more. We are not all in the position of Stephen Hawking with supportive parents, wife and close friends; neither do we all have his intellect. Most of us are average people whose ambition is to go through life with a family, work and leisure activities. For this to be achieved the basics need to be in place…. accessible public transport, flexible working hours and a flexible benefits system that does not penalise for trying to gain paid work. Here’s to progress.

Babel Fish Anyone?

I have to apologise to those of you who had a two-lined post delivered to your inbox. This was technological incompetence on my part and happened because I am at the time of writing this on a mobile phone, undertaking a weekend’s bed-rest trying to heel ulcers on my feet. I touched what I thought was the ‘save draft’ button and 30 seconds later realised I had published what was a very meagre post indeed.

I started the week feeling comparatively limber from a disability standpoint. This is, I think, due to the switch to British Summer Time and the lighter nights and mornings it brings. This is in addition to the mega-strong anti-inflammatories my doctor prescribed.

I woke up last Sunday to bright sun and a lovely breeze, this saw my independence skills sprouting anew. They have been a little dormant this past winter with one thing and another. It was what my mum calls “a good drying day”. I decided a change of bedsheets was in order as I was spending the afternoon at my parents’ house; meaning that my Mum could dry the sheets, iron them and put them back on my bed. This was the method in my forthcoming madness anyway. So how did I achieve my aim? The procedure goes thus:

1) pull back duvet.
2) fling self bodily onto bed in a starfish position.
3) Claw at bottom sheet until elastic pops off corner of mattress.
4) hold corner of sheet and roll to end of bed. This should successfully remove sheet for washing.

Begin the same procedure with the duvet cover and realise one minute in that the cover has buttons at the bottom and not the simple press-studs I was expecting. This makes for a much longer job and feels like Occupational Therapy. For a brief moment I am transported back 30 years to my first class at school. Along with the toys, learning aids and physiotherapy equipment there were a selection of fabrics stretched over a wooden frame all of which had different fastening. There were zips, buttons, toggles, press-studs and Velcro . There you would sit relentlessly grappling with whatever torturous ensemble came your way. I hated the buttons, and still do all these years later. They are what clinches me buying an outfit or consolidates its rejection, or in the case of the bedding situation vow to emerge undefeated!

This I did some one hour later when I put the lot on a boil wash. I rolled back into the bedroom to flick on a DVD. I hunted for the control in all the usual places and a few unusual ones, like my bathroom. Sounds unlikely I know but I have found it in there more than once. It was nowhere to be found, I gave up and went to have a cup of tea. The kettle boiled and all was silent, except for the washing machine in amongst the usual sounds associated with it doing its work I could detect an ominous ‘clunk’. The control had been gathered up in the sheets and had been merrily working its way through the clean, rinse and spin cycle. I was horrified, surely it would not survive and I was about to be plunged into televisual limbo, as the emergency control was at the top of the television set and tantalisingly just out of my reach. I thought I had just created the words first ornamental TV.

I retrieved the control from the drum, dried it, changed the batteries and pressed the power. I have to say I did this more in hope than expectation, I nearly passed out when the little red light blinked on and News24 came on the screen. This is a marvel and triumph of Swedish engineering as far as I am concerned!

After all this activity I felt like I deserved a bit of a treat. I ordered a box set of Law and Order I had never seen, just before I discovered ulcers on my feet and got told to rest and elevate them. I thought at least I would have something good to watch. I waited for the postman in great expectation, opened the parcel put the DVD into the machine only to discover it was in fact dubbed in French. Babel fish anyone?

(For an explanation Google ‘Douglas Adams’ and ‘Babel fish’).