"The government says I'm NOT disabled"

Posted by kaberett

Those of you who were at our OxFringe shows last weekend will have seen a wheelchair user holding up a sign reading "the government says I'm not disabled". Those of you planning to attend our upcoming shows in London and Edinburgh will also have the chance to see it. (It's not actually very exciting, I'm afraid: duct tape and cardboard and marker pen.)

There is, you will be unsurprised to learn, some backstory to that sign. This is it.
To begin with, let's set the scene: it's the night before the first show, and your intrepid hero has just purloined a marker pen from their baby brother's desk; duct-taped four sheets of A4 card together; and is now trying to fit something pithy onto a (bodged) piece of A2. Remember, please, the constraint that this should ideally be visible from twenty yards.

Nuance, somewhat inevitably, gets lost.



Here we go, then: I have severe endometriosis (photographs of innards available on request!), resulting in chronic pain and fatigue. I also live with joint hypermobility, thankfully mild asthma and allergies, RSI, risk of migraines¹, and depression. My standard daily medication consists of 9 different drugs (or, to look at it another way, 18 tablets and two sets of inhaled wossname), to which I add another 3 drugs as required. I am frequently faint and dizzy; I struggle to work up the motivation to carry out basic self-care; my hands often shake; I find it difficult to grip things; and heavy lifting (for example, a small jug of water) is often not something I feel safe doing. Standing for more than about two minutes hurts; walking more than half a mile means I'll need to spend the next several days having afternoon naps.

To help with my mobility issues, the NHS is prescribing me a wheelchair with supportive seating: I'm one of the (at least!) two-thirds of wheelchair users who can walk.²

In October 2011, I decided I should probably apply for Disability Living Allowance. In March 2012, I finally got well enough to actually do so. I imagine that quite a few of you are familiar with the form: for those that aren't, feel free to go and have a look. Filling it in is a horrific experience: it's 38 pages long, and it requires you to talk - in gruelling detail - about everything that you can't do. Can you motivate yourself to eat? To take your medicine? Do you need help at night? Do you need help going to the toilet? How long does it take you to do these things?

It's disheartening and demoralising: I'm lucky enough to have variable conditions, and so I'm lucky enough to be able - mostly - to focus on my good days, and on the things I can do. This form? You have to focus on your worst days, and you have to do it in triplicate, and it's pretty inevitable that people end up realising that life is much, much harder than they thought it was.

I wrote 15,000 words of additional notes, explaining the impact of my impairments on my life: I can't do this, I can't do that, I can't do the other; in order to participate in these hobbies I need this help.

The Department for Work and Pensions rejected my claim entirely, on the grounds that:

• I can walk more than 50m at a reasonable pace and "in a reasonable fashion". Let's have some context here: I finally decided, for certain and definite, to apply for DLA the day it took me 25 minutes to walk 700 metres; I needed a nap the moment I got home. I make sure I walk close to walls, so that I can support myself on them; I frequently trip over my own feet, never mind uneven paving.
• I can reliably plan, prepare and cook a main course for one. Anyone who's ever lived or cooked with me laughs when I tell them this. So do people who've taken on caring duties from afar.
• I am neither a danger to myself, nor at risk of neglecting myself, if left unsupervised.  The letter with which I lodged my appeal contained photographic evidence to the contrary, put it that way.

What would DLA do for me? (Aqueducts.) It would mean I could get to and from lectures or work without worrying about the cost of transport. It would mean I could definitely eat a balanced diet even on days when I can't cook. It would mean I'd be able to pay someone to help me deal with my "morning" routine, which will often take me upwards of three hours if I'm left to my devices. It will mean I don't feel guilty about spending money on aids like shower stools, which make it possible for me to wash most days as opposed to some days.

But, says the Department for Work and Pensions, my multiple progressive chronic illnesses don't count. I'm not ill enough; I'm not incapable enough; I'm not enough of a danger to myself. The government, in its great generosity, has decreed that I reliably can wash myself; I can reliably feed myself; I can reliably leave the house unassisted; I can walk without severe knock-on effects.

If only those things were true.

And that's why I hold up a sign that reads "the government says I'm not disabled".

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¹ i.e. I get migraines, but (fingers crossed) I have a single well-identified and easily-avoidable trigger.
² Aldersea, P. (1996) National Prosthetic & Wheelchair Services Report 1993 - 1996, London, College of Occupational Therapy.