I've been trying to pin down a hazy idea that's been floating about in my blog-head for a few weeks now.
People greater and way better informed than me have struggled with definitions of disability for decades, so I won't pretend to analyse social models or medical models or biopsychosocial pseudo-science.
I'm thinking about our lives. And the way that they've changed since around 2008.
I never ever thought of myself as a "scrounger". Far from it. I had a terrible illness that limited my life in thousands of ways. Crucially, I was never given any cause to.
My Blue Badge was the thing that improved my quality of life the most. It literally made the difference between leaving the house and not. If I can park right outside the door of the supermarket or the school or the hospital, I can go, if not, I simply can't manage.
Yes, I can walk. I can just about get round a small supermarket without feeling so exhausted I have to sit on the floor. Before I had the Blue Badge, I regularly had to sit down in a shop and put in an SOS call to my husband. I became more and more insular, less able to enjoy the things everyone else took for granted.
When I decide to go to a shop or a school concert, I know that the rest of the day will be a write off. How does the act of over-riding my disability affect everything else that I do? My energy and ability are limited (see The Spoon Theory for a wonderful explanation butyoudontlooksick.com/arti... ) and for me, managing my disability means achieving as much as I can, every day, with the limited ability that I have.
I could have given up. Many do. I could have gone to bed and said enough was enough. Given up the daily struggle for a degree of normality.
I could give up on food (it disables me more than anything else) and accept a permanent feeding tube. But I like food. I refuse to give up on something so fundamental, so entwined with social interaction and pleasure, just because it hurts and makes me vomit and keeps me on the loo all day.
I could have chosen not to have children. Some might legitimately argue that I should have done. But imagine the joy I'd have missed? The love that fills the places where pain lurks. The shiny little faces that make me be more, do more every single day. Sometimes (well, often) it's all way too much, but they keep me going, always more important than my various symptoms or dark, dark, days.
I could use a wheelchair, I very often need to. But then I become more disabled. My muscles waste a little more, my heart would get a little weaker, my blood, already sticky with inaction would clot a little easier, potentially bringing on stroke No2.
I could stop bathing or washing my hair or getting myself dressed. Sometimes those simple things take me all day. Sometimes I can't do them at all. But then who am I? What is left?
Disability Living Allowance (DLA) was the extra money to acknowledge all of those things. It meant I could buy food that didn't make me as ill. It meant that I could pay for some help in the bad times. It meant that I could get my children to school in a taxi on days I can't leave the toilet. It meant that I got a Blue Badge.
As we all trawl through the criteria for the new benefit to replace DLA (PIP or Personal Independence Payments) it becomes clearer and clearer that is designed to disable.
If I can make a simple meal using a microwave, if I can get dressed and wash myself, if I can walk more than 50 metres, whatever it costs me, I am no longer disabled. It no longer matters what those things cost me, their effect is irrelevant. If I can clean up my own incontinence, incontinence is no longer disabling. If I can chew, I am not disabled, never mind the carnage that the transit of that food causes.
So, if you are disabled - and make no mistake, I mean disabled in any way at all - deaf, blind, paralysed, mentally ill, or if you have a "fluctuating condition" like mine - if you can leave the house, care for yourself in the most basic ways and stumble through a semblance of "life" you will not qualify for PIP. If you give up, stop trying, stop fighting for every minute of every day, you might.
The same is now true of social care. As councils up and down the country attempt to save an eye watering 25% from budgets, "moderate needs" no longer exist. You must simply struggle through "moderate" until the daily effort pushes you towards "critical" Then the skeleton remains of state assistance will pick up the damaged pieces. And those pieces will be more damaged, will cost the NHS more money.
The message on disability is clear and is ringing out loud and true across every town in the country - "Give up, don't fight, don't try to be the best you can be, don't cling to pleasure - it is not for the likes of you.
Don't you dare EVER have good day, take a holiday, and God forbid, throw caution to the wind and risk days of pain for a moment's joy on a water slide. Don't stay active, don't keep your disability at bay for as long as you can. Don't try to avoid costly medical interventions. Don't let your neighbours see you in the garden or hoovering the lounge. Don't cook a beautiful meal, eat microwave meals and be grateful. Don't be so selfish! How DARE you think you deserve a partner or children and if you do, expect that they will become more exhausted, more neglected as they are expected to become "critical" themselves just caring for you.
It is a terrible, sinister shift. Possibly not designed to be so - who knows? I could no longer say for sure if this is utter ignorance and a lack of understanding of disability, or a sinister attempt to ensure that disability becomes more marginalised, less visible and in the end.... well in the end what? What will become of us?
The Government think we will all buckle down and get jobs. I still cannot imagine in any way at all what makes them think we didn't try that already - in some cases, mine included, until it brought us to the very brink of trading our lives for a pay cheque.
We are talking about millions of lives, not just a handful. Half a million people losing DLA - half a million!! Many more losing ESA. Yet more left to sit in their own filth, eating when a neighbour knocks to check, for want of a little social care.
Once again, I ask whether we need to wait for this terrible, inhumane bomb to explode across our news bulletins or whether we think again. Now. Before it is too late.
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