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.

Saturday, 14 January 2012

Spoonie: good or bad?

I have recently come across some people vehemently opposed to the term spoonie. For those unfamiliar with the term it is used by a large number of disabled people, who, for one reason or another have to "manage" their days very carefully. This may be due to a lack of energy, excess pain, having to change position frequently or other reasons I have not thought of.

The term spoonie was coined due to an essay called "The Spoon Theory" found on a website "But you don't look sick".

Essentially a "spoonie" is given a very limited number of spoons each day and every activity (and this includes simple things like washing, getting dressed, eating, or even sitting up for a "prolonged" period) costs a number of spoons. Due to the low number of spoons, unlike other people every single activity has to be very carefully considered and weighed up and prioritising is essential.

So while some define being a spoonie as someone who has low energy, etc, I define a spoonie as someone who continually manages and priorities their tasks and energy due to pain/fatigue etc. So it is a coping method just as much as a "symptom".

I regard being a spoonie as a fact of life, no different to being a wheelchair user. It is a useful term which explains to people why I may have to rest, or leave early or not do lots of things several days in a row.  More than that, I regard it as a technique. If a spoonie does NOT manage their energy correctly they soon become unstuck. In my own case, before I had adapted and accepted that I simply did not have the ability I used to have, I pushed myself to do things I couldn't really do. I would then become extremely ill.

I am now very adept at knowing exactly when to push myself and when not to. I also know that it is possible to push for a special event and to pay for it later. It is ok. Not particularly pleasant, certainly not doable the whole time, but well worth it. I regard all of this as the "spoonie method". It is what it means to BE a spoonie.

So I was rather surprised when I was told that I was "self pitying" and "maudlin" for calling myself a spoonie. Apparently spoonies are concentrating on their problems and feeling sorry for themselves.

Now I must admit that I am not a huge fan of the original spoonie essay. I do find the tone a little too self pitying.
If I had been explaining the idea to my best friend I would have let her use up all her spoons and then laughed in her face and told her she now had to go to bed at 11am. At which point we would have had a giggle and then tried again until she got it right.

If ever someone tries to pity me I explain that it is a coping mechanism, no different to using my wheelchair. Sure, it is clunky, it doesn't go upstairs, and it isn't ideal. But it usually gets me from A to B. I'd be a heck of a lot worse off without it.
Likewise being a "spoonie" ie managing my "spoons" is awkward and it is annoying having to think about it all the time. But it allows me to do the things I need or want to (most of the time) without making myself ill.

I don't expect your pity for being a spoonie any more than I expect your pity for using a wheelchair. If I describe myself as a "spoonie" or a "wheelchair user" I am simply stating a fact.
Me telling you I am a wheelchair user will help explain why we need accessible venues if we go somewhere.
Me telling you I am a spoonie will help explain why we can't do lots of things all at once together, or not one day after another and we may need to adapt to this by various means (eg shorter times out, rest periods, etc).

Now explain to me why the term is offensive and why I am self pitying?