naming disability, and cripspiration
What do you call your disability? Rude words, often, of course. But more seriously I'm unsure whether or not I should use terms like 'an autistic' or 'a diabetic'. I tend to be cautious, and say things like 'a person who has autism', because I know that I wouldn't be very impressed if somebody called me 'a multiple sclerotic'. But perhaps it's just
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I have clear memories from a much younger age of being brought to the dentist (I would have been about 16). As the dental nurse called me in my mother stood up too, and anounced in a very loud carrying voice accross the entire room 'You need to tell the dentist, she is a case of anorexia, and I believe that can affect the teeth'
My mother, being the drama queen that she was, would have cherished that moment, and I can just imagine the sympathy, and looks, and talk she would have milked for all it was worth in the waiting room while I had my tooth worked on. I, on the other hand, was profoundly humiliated and destressed by it. Its a moment, all these years later as an adult with no trace of an eating disorder of any sort that I still draw on, and get snippy with other staff who will refer to our students as 'a dyslexic' for example.
My own disability is 'the black beast'. It has no other name. I do not have a clear diagnosis. If I started listing the *lables* I do have it would get long and silly fast - dyslexia, dyspraxia, ADD, asthma, epilepsy, pernisious anemia, folic acid deficiency anemia, benign essential tremor, and so on, and NONE of these things are really disabilitiies to me, as none of them spectacularly affect my ability to engage with daily life. They are just quirks about the way I process information or have to manage my body. Thats all. I CAN process information, and I CAN manage my body (in relation to these things)
The undiagnosed profound mussle weakness that the doctors have no interest in becasue they can't explain ... that has kept me on forced sick leave from work for the last six months, often prevents me from leaving the house, and can prevent me from leaving the bed on a really bad day. That has no name or identity other than as the black beast that is slowly sapping my life and eating me alive from the inside out. So, even as simple question such as 'what's wrong?' or 'why do you use crutches?' can be a minefield
Lables, and the ability to access lables, as I'm discovering, can be very powerful
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It's true that labels are very powerful. Do you find it helps, in explaining yourself to people, to focus on the tip-of-iceberg stuff? The parts people actually need to know about? I ask because some of my most intrusive MS symptoms are deeply unglamorous - things that I talk about on my own LJ page but not here on this public thread and not in my workplace. I've recently started to anounce only the indirect effects which are relevant to conversations. Like, telling a senior colleague that I'm taking so long to write our current academic paper because I've had a bout of severe insomnia which saps my ability to think. When phe remarked that phe hadn't heard of insomnia as an MS symptom, I replied that it's an indirect effect and that I'm now using different treatment for it. So here I am, writing that paper!
So I'm thinking that you perhaps don't need to list all those diagnoses about yourself. Not in all situations, anyway. Does it work for you to tell people, eg, 'I use crutches because I've got some kind of muscle-weakness disability, the doctors are still trying to decide exactly what it is, but meanwhile, please can I have that chair?'
Your mother was well out of order to announce details about you like that. Did you ever talk to her about what she'd done? I've noticed that sometimes, parents' attitudes to their daughters and sons don't grow up fast enough. As though you're still a baby, with no privacy, long after you've grown up. And it's worst of all when you're a teenager because that's such a sensitive age.
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