Its Blogging Against Disabilism Day today, a day that comes around on May 1st each year. My previous entry (from last year) can be found here, where i wrote about the prejudice one can suffer from those who ought to be sympathetic towards you. I’ve found it harder to write, this year, mostly because i don’t suffer from that much prejudice, or disabilism (like racism, but on the basis of disability). or maybe i’m so accepting of the disabilism i don’t see it? I don’t know. If that’s the case then i suspect its a common one.
At the same time my incapacity benefit is up for renewal; and that means its time to think about my disabilities and work and how they affect my ability to work. I’ve had pressure to go back to work over the last five years, from family who probably don’t fully understand my problems. Is that a form of disabilism?
for those that don’t know (and i don’t often write about this, as most of my blog is directed towards gardening and cooking etc.), I’m deaf, have been since.. oh. around about 4 years old. We don’t think i was born deaf; my maternal grandmother was a primary schoolteacher and she strongly believes that if i had been deaf at birth, she would’ve spotted that; she says i reacted normally to sounds as a baby. It was only when i grew older that my speech wasn’t developing as it should’ve, that my parents investigated and i was properly diagnosed. I also suffer from stress related problems. Although the roots of this probably lie in the bullying that happened when i was at boarding school, subsequent events such as work related bullying as an adult and then a very bad relationship (not my current one, i hasten to add), have exerberated the problems quite badly. The most obvious effect is IBS. IBS is one of those things that makes me quite cross; like colds/flu, it seems to be claimed by anyone who has a tiny twinge of abdominal pain that could be put down to other things – and this causes problems for people who suffer from the extreme form of it. In fact, one community health nurse pooh-poohed me when she asked why i didn’t go back to work and i started to explain to her that i have IBS with a “well i have IBS too and it doesn’t stop ME working.”. yes, dear, and you probably have a mild form of it, and YOU should know better than to apply your experiences to mine! (*mutters*). Is that disabilism?
IBS, for me, means the following. when i’m stressed, i swallow – literally – the stress i’m under. the stress manifests itself in muscular contractions around my small/large intestine, my lower belly. It literally feels like someone is plunging a knife through my pelvis and twisting it around. At its worst, it leaves me bent over, pale, unable to breathe while the pain is there, clutching my midsection like i’ve been mortally wounded. it comes in waves, and by the time i’ve managed to swallow any pills.. it can be gone. Or it remains for a couple of hours. One side effect is that the contractions push any food that is working its way through my system out in a hurry. When the contractions catch me i know i have a certain amount of time to get to the toilet – usually a matter of minutes. When i do it is – pardon the personal detail – explosive, and diahorrea like. It plays havoc with my health, as can be imagined. I cannot remember the last time i had a proper stool. Gillian McKeith would be going bananas with me! Sometimes the contractions and the resulting explosion, once the explosion is over, that’s it. With small amounts of stress, i can then get on with things. Other times i’m either sitting on the toilet for hours.. or running back and forth all day. Those days i literally cannot move very far from a toilet.
I’ve had to learn to swallow my embarrassment and ask to use a staff toilet in shops – even to the point of having to lie about being pregnant when they initially refuse my request. Funny how IBS gets a refusal, when pregnancy gets the okay. Maybe because it would look bad in the papers. Is that disabilism?
but IBS is simply the most obvious problem, for me. Its the manifestation of the stress i live under, daily. I honestly can’t remember when i last lived without it. Lets see. Getting up for a specific appointment is a nightmare, especially if i have to catch a bus to do it. This one dates back to a previous workplace, where the buses were extremely unreliable, and the bosses would come down like a ton of bricks on anyone who was late (and i had IBS even then, so you can imagine how popular i was – i lost count of the times i called in sick for a day when i probably could’ve worked, simply because of the hassle i would’ve gotten otherwise. Is that disabilism?). I have to be up at least 3 hours before i have to leave, more if its going to be a stressful appointment, simply to allow time to deal with the cramps on the toilet. I have to allow extra travelling time: more than once, i’ve had to run back to the house from the bus stop.
My deafness causes a certain amount of stress too, and tiredness. Fear of not being able to understand someone, or to communicate what i need. I speak quite well, well enough, in most cases, to be understood. I have far more problems understanding other people, especially if its someone with a strong accent, or someone who mumbles, or we’re in a noisy environment.
<< please excuse me.. one of those cramps is kicking in now.. >>
right. where was i? oh yes. more than that, though, the deafness and stress combined means that any time i have any interaction with someone that i don’t really know, i have to play it over in my mind, i have to think things through to every possible outcome of something, even the most fantastic. For example, if i’m going to a shop, i have to go through in my mind, everything from the shopgirl asking how i am, to someone delaying the queue in front, to not having the right money – even to someone holding the shop up with a gun! (and yes, that did happen once, it was on a train, where a drunken idiot held the buffet car up for more booze. It turned out to be a fake gun, but i didn’t know that – they ended up getting everyone off the train.. and i ended up going to to court to give evidence against the guy. That hasn’t helped the stress levels either). In my head it feels like if i can plan for every eventuality then i can deal with anything that happens. It sounds wierd but its the only way i can cope, to have replies or actions ready to access, kind of like a computer equation. you know.. IF xxx THEN xyz AND abc. Its mentally exhausting, and that, coupled with the tiredness that comes from lipreading whats going on around me, and trying to be aware, means a simple shopping trip can and does wipe me out. Imagine what a meeting at work would do to me (what it has done to me, in the past). In some respects, because i do speak so well, and cope with people on a one to one basis in a quiet environment, there’s no understanding of the problems when out of that – is that disabilism?
Within the family, when one parent doesn’t understand that your deafness isn’t necessarily about not actually being able to hear (with my hearing aids i can hear quite a lot), but in interpreting what one is hearing? That you move through a world where everyone is essentially speaking a foreign language? that the strain of lipreading and understanding your family is stressful, tiring, and yes, leads to IBS attacks.. When one member of your family so totally fails to understand the stress you’re under, that you’re simply struggling to survive mentally, gets upset over something you haven’t done and decides to send an extremely hurtful letter.. is that disabilism?
when your own partner mocks you in an argument for misunderstanding him, or for saying something wrong, something that cuts to the quick and hurts so much, no matter how much they apologise for it later.. when they get so frustrated with trying to explain something to you for the 5th time that you just can’t understand and wind up shouting at you.. is that disabilism?
When a friend forgets that you can’t hear so well and suggests you listen to some kind of music, or call someone.. is that disablism?
When you yourself don’t see (until you stop to think about it) the negative reactions that people have to your disabilities.. is that disabilism? is that even possible, disabilism towards yourself?
I don’t think i suffer much from disablism. Do you?