Blogging Against Disablism 2009
Yesterday was Blogging Against Disablism day 2009. Follow the link and you can read all kinds of people telling stories, giving and having insight, perspective ... there are some powerful things there.
I've spent a couple of days looking at the information there, rolling it over in my mind and planning to write something ... because this is one hell of a big subject, one you could drive a bus through and until it touches you it's invisible as all get out. Maybe you're like Ezekiel and you're getting along one day, keeping on keeping on, at work, working out, things are going well you've got plans and then suddenly Bam! You wake up feeling not quite right and that's how it starts.
So then you're sick, maybe you've got doctors that know what the hell is going on, maybe you've not. Maybe you're sitting in appointment after appointment, going for the same tests, being poked and prodded and eventually having someone with a medical degree look at you and all but say 'so what do you want me to do?' I still can't believe the day we heard that, looking at that blank expression and only getting put on the right path to seeing the people we needed because I lost my shit in the most middle class way possible. Taking careful notes because doctors seeing my partner after her hearing went might acnowledge that she's deaf, but they can't make the effort to speak the fuck up during an appointment.
Maybe you're working for a company who say things like 'I wish you'd just given in and stayed home, because you kept coming in we've had to keep paying you for longer' when you've been dragging your arse to work every day no matter how much everything hurts. Who try and get out of their statutory sick pay obligations because the forms are too much work to fill in (In the end, I went in myself, sat down at her employers desk and filled them in for him, telling him where to sign).
At least during all this, I had an employer who was happy that I was working from home, that I'd be unavailable for large parts of the week when we needed to get back and forth to hospital and doctors appointments, that paid enough to get taxis when she couldn't walk far enough to get there in the first place. The more I talk to other people in this kind of situation, the more I realise how much of a luxury that was.
Maybe you're like Ezekiel's eldest sister, fighting to get treatment for pain that absolutely floors you, dealing with doctors who are so paranoid you might be a drug seeker that they won't even prescribe painkillers I can buy otc here and you're sleeping for all of two hours at a time while spending half your life on the phone because your doctors don't fucking TALK to each other.
Maybe you're the partner of someone in this situation, staring at these same brick walls heartbroken because you can't fix it, trying your best to find your way between doing too much and not enough and helping reshape your lives together to take into account these new circumstances and remembering that some things have so much more weight now than they used to and not always getting it ... but you keep going. And look in bafflement at the people who say to you 'oh wow, you're so strong to have stayed around and dealt with this' like there was another option. As if you could walk out on someone you love when they're dealing with this, as if illness and disability cancel out everything you have together.
Though at least they're seeing that there is something there to deal with, right?
Privelege is invisible while you have it, discrimination is easy not to see when you're not on the end of it. I never hear anyone who's had to apply for sickness benefits talk about people 'cheating the system', but every other able bodied person I know can think of at least one example ... that someone told them about once, you know, those people. No one would talk about, examine and deal with any fucked up ideas about people who are visibly disabled, but a stack of my fellow countrypeople still managed to cry out 'Think of the Children!!!' when Cerrie Burnell started presenting CBeebies.
And I'd not be sitting here, dealing with the times when I walk too fast, don't speak up enough, or just make some fucked up assumptions that don't work anymore about the way our lives work now, what we both do and how we work together if Ezekiel had never got sick and now, a year and a half later, I'm still working on it.
We're working together.
I wouldn't be writing on this topic at all if it wasn't for Diary of a Goldfish putting Blog Against Disablism day together in the first place. And I wouldn't have found the thread of an idea that started this post if not for reading the posts by Emily and Zan, who are in a very similar situation to us.
Finally and fundamentally, I wouldn't have had the experiences above if I wasn't friends with the wonderful BlanketGirl, who's back I have alldays and if I wasn't married to my Ezekiel, who knows my every flaw, foible and quirk and loves me anyways.
This is a beautiful post!
It's so important for me, as a disabled person, to hear from people like you - who can give me glimpses into what it's like living with and loving a person with a disability. Because I know how much it affects the people who love me, but they hardly ever talk about it... and these sort of posts give me ways to possibly start those conversations. So thank you.
NTEs last blog post..Part dos
Thanks Daisy, and Thank you NTE, I'm glad it was useful.
I've been following up your review posts to find other things I'd missed by reading around, there's so much out there
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Thankyou for writing this, it's always worthwhile to hear about other's experiences. It's awful that somebody wouldn't bother to fill in your sick pay forms, and that you got discouraged from coming into work instead of appreciated... *sigh*. It's silly how much red tape and convincing doctors you're really, really, honestly, truly in pain and not just trying to sell tablets with pictures on them to ten year olds can be involved in getting prescriptions for over-the-counter meds. I've heard comments about benefits too, from people who don't even disagree with them, but they'll say stuff like "I wish I made a few quid out of living somewhere each week!" Do you wish you had the problems I do with independent living then? Do you wish you'd had a father who never taught you how to do anything or let you do anything practical in case you destroyed the universe? Do you wish you had aspergers so everyone would make fun of you all the time at school because you didn't fit with the stereotypical image of what teenagers are like (which isn't even true of all NT teens, but assumptions, they are teh rubbish).