Having a disability is fighting a war with a water pistol

I have been a Four Wheeled Wonder Woman all my life. I always say that my disability has been a blessing in as far as I have never known what it’s like to walk. I haven’t got any memories of an able bodied life, I have lived my life very happily in the main and worked hard to counteract and barriers I have, smashing each one and proving everybody who has ever doubted my ability wholly wrong,  ‘cure’ me but to help my body fight any battle it needed to, everything was given to me in daily and weekly doses from physio and hydro therapy every week to the more painful standing frame therapy which happened every day for around four hours which was, at times, so painful I had been known to throw up.

As well as this, there were regular visits from the Doctors, who kept an eye on my general health, sometimes discovering further health issues and helping me to combat these. The Doctors would work with my GP, Parents and I to make sure I was as healthy an as comfortable as possible in my circumstance.

I’d be lying, if I told you I liked all of this intrusion of Doctors who saw me once a term, I certainly kicked up a stink when they’d infrequently suggested surgery I hated being made to do exercises, or forced sometimes with tears in my eyes into my standing frame, I had a handy knack of hiding in the toilets for as long as I could before my physio therapist would drag me out of and tell me it was ‘for my own good’. I’d put up a fight and it never ever worked.

My standing frame would even be collected by my Mum on the last day of term so that my standing could continue at home while I was off. My parents brought me an easel so I could draw whilst in cased in a frame to take my mind of it. I can still recall the growing intensity in my calves as time ticked by to the point where I could no longer bare it.

As I got older, my Physio session got less frequent and the exercises I was given where more about developing my independence skills and less about fighting my stiffening muscles, this they told me, was because there were younger people at School who needed the therapy more than me, as a result of this, my legs began to become more painful, not excruciatingly, but enough for me to notice, my posture worsened and a knock on effect of this was the discontinuation of my standing

At the age 14 and after years of pokes, prods, exercise and other interventions I was thrilled, no more pain.

I never realised what a good thing I had going.

Now in my 20’s I would do anything for that supported help and assistance. The decision to stop was not made by my Parents or I, nor was it Schools decision.  In government eyes however, once a disabled child becomes a disabled adult, the support that you’ve grown accustomed to stops. Completely.

Years later, and I now live in constant pain, which is often aggravated by movement. Something that I  never had to deal with as a ten year old know may not be cured but would most certainly be eased with the reintroduction and input of Physio, regular medicals and dare I say it, even the use of a standing frame would help.

Without this support, I have realized, I feel like I’m fighting a war with a water pistol,  I’m usually very positive about the difficulties I face, but there are days when I am so unbelievably hacked off with the pain, I’d do anything to take it away, the only thing that works is painkillers that render me useless by 5pm.

There is a campaign going on in Scotland to get the law changed so that disabilities are recognised as a lifelong condition, which will mean that other Four Wheeled heroes like me would be able to get the continued support we need to fight the daily war on disability without fear of sky rocketing cost.

I fully support this cause, and if it is a success, hopefully England will follow suit. Unfortunately my disability won’t ever be cured but why should that mean I have to live with a life of pain?

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