It’s not a surprise to any of my frequent readers that my income is (and looks set to remain) almost exclusively from social security payments (or “benefits” as most of the UK press call them). I get paid by the government because I am too severely ill an disabled to be fairly expected to look for, find and manage full time work. Should be simple enough, right? I got ill, I can’t look for work, I get paid until such a time as I can do (even though that time is likely to be “never”).
However what both the public and many politicians and media people who should know better have managed to twist this into is: “Liam doesn’t work and the government is taking money from people who do work and just handing it to him for nothing!” That’s not what’s going on. But the idea reveals what various people think it is that I and other sick and disabled people do with ourselves – they think we do nothing and especially that nothing we do is “work”.
Well, you know what, I DO work.
My job is staying alive with a malfunctioning body, nonstandard brain and a damaged mind while living in a broken system. My job is maintaining a decent quality of life. My job is the upkeep of my relationships. My job is being the best human being I can be during my one life.
If that’s not enough for you, let me break it down.
Per month I do:
16+ hours of therapy, processing, meditation and planned exposure to things that scare me.
4 or so hours talking myself out of self-destructive urges.
8 hours written and email correspondence with my care agency/social services
5 hours getting to and from medical appointments
2 hours attending planned and unplanned medical appointments (other than aforementioned therapy)
2 – 4 hours collecting and collating pieces of paper that can be used as “proof” that I’m ill, disabled and poor
12 hours researching aids, appliances and services that might help me live (more) independently and trying to work out how/when/if I can afford them
3+ hours emailing places / events I want to go to trying to find out necessary access information
3+ hours arranging for other people to do things like phone calls and planning travel arrangements for me
8 – 24+ hours lying on the bed resting because I’m too exhausted to do anything else no matter how badly I want to
3 hours writing emails apologising for missing stuff / not replying sooner because I was too ill to do so
1 – 2 hours writing emails requesting copies of documents about me be sent to me in a font size I can read
4 hours trying to order groceries online because I can’t drive or carry more than one bag of shopping or go shopping every day
3 hours waiting around in pharmacies
2+ hours getting hopelessly lost in places I know well and have on googlemaps on my phone
…. plus hundreds of hours of pain , dozens of hours of nightmares, taking twice as long as my peers to do most things and all the time that takes up…
Oh and plus all the things non-disabled people do like meeting up with friends, going on dates, talking to family, eating etc
But you get the idea. That list of things above is what I’m doing instead of working in a month when the DWP isn’t harassing me into spending multiple hours a day trying to fill in their forms and photocopy them all the evidence they want and understand their latest demands. It’s a month in which I don’t have any huge crises or get acutely ill with anything. It’s a bare minimum of what illness and disability gives me to deal with in any four week stretch.
And at the crux of it, that is my JOB. I work full time at managing my illnesses and conditions and the way they interact with a structurally disablist society.
I also happen to volunteer but not as much as I would if I didn’t have all of this going in the background.
A lot of people want you to believe that those of us who get benefits spend our time “do nothing” and while I don’t actually see much of a problem with people doing nothing if they want to, that’s not what we actually do. Having a chronic illness or a severe disability is a full time job in itself.
(If you think you that you / people who talk about benefit scroungers “doing nothing” don’t mean people like me, you’re sadly mistaken and this will be the topic of my next post.)