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This post is for Blogging Against Disablism Day 2013, led by the wonderful Diary of a Goldfish.
It's the first year I've posted for this. I don't blog very often - not because I've got nothing to say, but because by the time I've composed in my head what I want to say, I've run out of spoons to say it. And then, when I've got the spoons to say it, I've forgotten what I want to say.
But today I'm making a special effort and I'm actually going to blog.
It was 20 years ago, earlier this year, that my mum finally died of emphysema. It was three days before that anniversary that I found out that I was probably not going to suffer the same death. My mum was deficient in a protein called Alpha 1-antitrypsin which, along with the fact that she smoked and was exposed to asbestos, meant that her lungs were buggered by her mid-40s.
I spent my teenage years as a carer. I would push her wheelchair, I would help her to bathe and wash her hair. I would help her up and down the ten steps outside our house. I would help (more than a "normal" teenager) doing the shopping etc. I knew how to mix her drugs for the nebuliser, what the various beeps and lights meant, how to change the give sets on oxygen cylinders and frequently ran up and down stairs with them.
I spent the months before she died visiting her in hospital every day. I did my homework there, we ate tea together - at that point in time, the "hot" meal was at lunchtime and tea, which arrived at 4.00, was sandwiches. Mum would order the sandwiches for me as my after school snack, and either someone would bring us a McDonalds or a pizza or I'd get a couple of jacket potatoes from the hospital canteen at about 6 ish.
We had a small car (a Nissan Micra) and the folded wheelchair would take up most of the boot. It really used to annoy me, particularly in supermarket car parks, when people would shout at mum for not being "properly disabled" when she was getting out of the car and waiting for me to bring the wheelchair round to her. She could walk perfectly well, she just couldn't breathe. But people didn't seem to realise this. People would give her abuse because they couldn't see her disability. When she was in the wheelchair, she became invisible - on one occasion someone actually stepped over her in a crowd, it really was "does she take sugar". People didn't realise that they only ever saw her on a "good" day because on a bad day she literally couldn't leave the house - even a few steps left her so breathless, and the fear of not being able to get back in after doing whatever meant that "outside" was for other people most days.
Fifteen years passed, and a series of viruses over an autumn, culminating in pneumonia at Christmas, meant that my system, which hadn't been the best (I first had bronchitis at 9 months and glandular fever before I was 3), decided that it had had enough. I was diagnosed with ME in the spring of 2008, and fibromyalgia followed its kissing cousin in January 2011.
I carried on working full time, then reduced to part-time, and have now been off work for two years, one month.
If I'm walking more than a minimal distance, I need to use a wheelchair. I chose my car because the boot is almost precisely the same size as the powerchair I borrow most of all from my local Shopmobility. I need someone to help me bathe and wash my hair. I need help, sometimes, to get up the stairs. I need help doing shopping and housework and all the normal, everyday chores. I need reminding to take my pills and make sure I eat. Most of this falls on my husband. He's never actually known me well; we met when I moved from a fourth floor flat to a ground floor flat.
I get abuse in supermarket car parks because I'm not "properly disabled" because I'm not "wheelchair bound" (which, to me, implies someone is tied to their wheelchair, bondage stylee, with bungee cords). This particularly happens when I'm arriving at the supermarket - when I've been sitting for 15 minutes or however long it's taken to drive there - but less frequently when I'm struggling back to the car having done the shopping, looking like death warmed up. I once had someone sit on the arm-rest of my powerchair in a supermarket and start having a conversation with another shopper. I frequently have fun with people proselytising religion in city centres (who appear to be the only people who can see through the invisibility cloak of wheelchair):
Them: "God will heal you" *thrusts leaflet into my hand*
Me: *peruses leaflet* *stands up* *does lap of wheelchair and a star jump or two* *sits back down knackered* *wheels off giggling*
Best Mate (or whoever is with me): "I want that one" *giggles*
But again, people only see me on a good day. On a bad day, I'm stuck in my flat, the fear of not being able to get back up the stairs again keeping me here. On a bad day, I'm in my pyjamas, laying on the sofa, TV on in the background, not really concentrating on anything.
But I'm lucky. I'm luckier than my mum, at least. Why? Because of the internet. Because of social networking sites and fora and blogs, I know I'm not alone. I can talk to people who are similarly restricted, either by disability or pain or whatever, from all over the world, and I don't feel alone.
And for that, and for the solidarity that days like today give, I am grateful.
