Unfortunately, there is no cure for Friedreich’s Ataxia yet.
I will be disabled for the rest of my life. Obvious, right? Well it took me a
long time to accept that I will be a ‘Wheelchair Boy’ forever. Surely that’s
understandable though. It is a bit of a change going from being able to walk
around and playing football to having to use a wheelchair permanently. So,
you’d think that people who deal with disability on a daily basis like the
social services would understand that concept.
Apparently not. There have been a few examples recently
where people have failed to grasp that this condition will be with me forever.
Take my care package. I require 24/7 support, which I got at University, and
have been getting at home. All of a sudden, those in charge of the money have
said that I’m only entitled to 9 hours of care. They clearly think a miracle
cure for Friedreich’s Ataxia has been discovered meaning that I am now able to
wash, dress, cook and clean without any assistance. Although it has now been
cleared up, this ridiculous error means that my carers (I prefer to call them
PA’s) will have to wait until next month to get paid.
My standing hoist again illustrates that people have
difficulties comprehending the idea of someone having a permanent disability.
The Occupational Therapist has to come and check I still need it every 3
months. As if in-between the visits, I started to become ‘normal’ and no longer
used the standing hoist. Even in some parallel universe where I got better and
began walking, why would I keep hold of equipment that in this imaginary world
would now be obsolete? Just don’t make sense.
So, why do various strings of the establishment keep
checking if I’m still disabled? Although I criticise them a lot in posts,
people who work in them kind of jobs are not plain stupid. They are merely
working on behalf of the government and clearly understand that disability
doesn’t go away overnight. Instead, they are checking if I’m still alive (or
should I say hoping that I’m dead). Like I discussed in my previous post, the
government want to save money and disabled people must be such an unneeded
drain on the economy. Killing the
handicapped wouldn’t work and would result in mass uproar (Hitler tried) so the
next best thing is to wait with baited breath for natural causes.
Now, before you all think, “he’s a bit touchy and insecure.
Think’s that the government are trying to kill him”. I’m not saying that. I’m
saying that deep down they want disabled people exterminated because it would
make their life easier. Now, I’ve discussed my logical theory with my friend
and he replied that he “wishes it wasn’t true but it probably is. Makes perfect
sense” I know it’s a bold statement but I reckon the thought has crossed George
Osbourne’s mind. Think about it. Not paying out benefits + not having to make
adaptions such as ramps + not having to fork out for equipment + fewer NHS
costs = would go a long way in helping to wipe out the deficit.
Also, you wouldn’t have to listen to whiney ‘Wheelchair
Boy’.
Bye for now!
Glen - You have every right to be angry. Be assured you are not alone. This government is doing so much to return us to a dark-age... I love your blog: the humour; the insight; the positive attitude you have to life and all it throws at you... Society is changing; but still needs educating about the challenges of disability - You are a true champion for so many people! Don't ever stop! John
ReplyDeleteThanks for reading my blog and I'm glad you like. Like you say, change is gradual and I will definitely continue to educate more people, including the government who will hopefully realise the error of their ways.
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