There are a lot of phrases that I dread hearing from people, many of them because I have no idea how to respond to them. How exactly should I respond to being told how brave I am? This usually comes from older women and is accompanied by a hand laid on my shoulder or knee. Now does this phrase come after they've just seen me wrestle a tiger to the ground? No of course not, my extreme bravery is being seen in public whilst disabled. This action is the height of bravery according to the older 60s in my town, perhaps I should be awarded a medal. The other phrase along this line is "You are such an inspiration" and I have really no idea what to say in response. I do not feel that braving the town centre on a Saturday afternoon is really that inspirational, neither is being in Tesco doing my weekly shop. This is another case of being seen in public whilst disabled, and yes I do get that for older people it wasn't something they saw much of. But there have been disabled people living independently for the last 20 years, if not more, and they have to get used to seeing us sometime.
The other lot of phrases I hate hearing are more difficult to explain. Lately I've been hearing "You are looking so much better/You are doing so much better" quite a bit, from members of my family especially. Now to those saying it, it is a phrase of joy because to them I am looking/acting healthier. But what I hear is "Clearly you have been faking being sick this whole time" and part of me knows that is my anxiety talking, but it is also a lot about the current attitudes regarding disability. Here in the UK we seem to have two types of disabled people, the inspirational and the fakers. Neither is a group I particularly want to belong to, but being classified as a faker is a lot more terrifying as it can lead to financial penalties. Now I don't think my family or friends are going to report me to the benefits agency, but there are other people on the peripherary of my life who might. So being told I'm looking healthier is really quite scary to me.
I read a really great column a while back by a women talking about how she had found herself 'performing her disability'. What she meant by that was that in public she was often acting less able than she actually was that day in order to avoid being confronted by a complete stranger. To the able bodied that scenario probably sounds preposterous, a stranger would confront you about your disability? It does happen, it's happened to me on more than one occasion. Recently I have noticed that I am doing something similar, I am a wheelchair user due to chronic pain and therefore can walk although not without excruciating pain. When I am out in public I try not to move my legs, because I am sick of people pointing and staring if they see any movement below my waist. Believe me that complete strangers do watch me very closely, I suspect in case I am one of those 'fakers' because obviously the only people who need to use a wheelchair are those with a form of paralysis.
So what was the point of all this? I suppose be more thoughtful about what you say to people and if someone in your life asks you not to say a particular thing to them, then just don't say it. You never know what those words actually mean to them, no matter how kindly you meant them.
That’s such a good way of describing it- ‘performing (my) disability’. We have a blue badge and there’s an awful lot of parading the disability that goes on when we get out the car. We have the impression that people are often looking when they have seen the blue badge. One time we got challenged by a guy with 2 prosthetic legs who felt we shouldn’t have used the blue badge space we were in bcos there was a woman in a wheelchair whose driver had dropped her off and then gone to park further away. :-(
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