Sunday, 15 January 2012

Spartacus Stories: DLA: my wheelchair, my life.

DLA changed my life and currently maintains its quality in a multitude of ways both large and small, from allowing me to read to reducing my pain levels. However I will concentrate today on the biggest and most obvious of outcomes.

My walking is rubbish. Let's face it, I can only walk a few steps, and that is with what is called my "penguin walk". My arms are pretty bad too and I can't push my manual wheelchair. Unfortunately, due to my ability to take those few steps, that rules me out from getting an NHS electric wheelchair. An electric wheelchair is a big expense: several thousand pounds. Without one however, I am unable to leave my flat on my own.
But I was "lucky". My illness is progressive and I knew in advance that
a) I would need an electric wheelchair
b) The NHS probably wouldn't give me one
and crucially
c) I was entitled to Mobility DLA long before I was bad enough to need an electric wheelchair: at a time when I could walk a little bit with a stick and used a manual wheelchair for longer distances

So I started saving up a bit of my DLA each week. Mid way through my PhD when I could no longer push my manual wheelchair and my walking had finally became so bad that I would have been housebound, I bought my first electric wheelchair. I can't begin to tell you how wonderful it was. I felt free for the first time in months. I could leave my flat without pain, which meant I no longer had to limit trips to only essential ones. I no longer spent weeks housebound, only leaving when people took me out in my manual wheelchair. I finally started socialising again, seeing people I hadn't seen in months, enjoying simple things like a bit of banter over coffee, a "walk" in the fresh air, gossip over drinks after work. And (I suppose this is kind of important), I was able to resume a far better work practise again. Although I had been working from home, missing all the seminars conferences and meetings had taken its toll. And talking with my supervisor by skype only was far from ideal.

It meant that I was able to continue and complete my PhD. A year later it meant I was able to go to a job interview and then work for 5 exciting and wonderful years as a researcher at university. And of course I continued to enjoy the freedom I explained above. NONE of this would have been possible without DLA to buy my electric wheelchair.

Now, PIP draft proposals look set to be far stricter and will for the first time take wheelchair into account at assessment. This will drastically reduce the amount of money you get if you can "walk" just 50 metres (even using crutches or  walking stick) before you need to use a wheelchair. The reasoning behind this is that you are then considered to be "mobile" regardless of the fact that many buildings and most public transport is still unaccessible, not to mention problematic pavements, hills and bad weather!

This means that I almost certainly would not have been able to save up enough money to buy my wheelchair. Housebound, totally dependent on the goodwill of others just to leave my own home, who knows what would have happened? I thank my lucky stars that I had my DLA.

PIP is ill thought out and the evidence has not been heard. Please pause this legislation so that terrible mistakes do not happen and wreck people's chances at a good life.

1 comment:

  1. can you please advise which electric wheelchair you have and how you take care of maintenance?
    thanks for your advice.