I carry a lot of shame around with me. I suspect a lot of other disabled people do too.
Whenever I’ve tried to talk to someone – especially mental health professionals – about the feelings of shame, they try to dismiss them by straight away pointing out that I have nothing to be ashamed of. I need not be ashamed that I can’t wash and dress myself. It’s okay that I can’t walk. There’s no need to feel bad about being unable to use the bus alone.
And I get that and it’s not like I don’t mostly believe it. I know I’m doing the best that I can in a world built for people with minds and bodies very different from mine, a world designed to exclude me. I know.
The shame is still there.
The frustration of trying to do something that would be simple and quick for (seemingly) anyone else but does not come easily for me. The self-directed upset and anger when, despite trying and despite every adaptation I can get hold of, something is still impossible. Of having to ask others to do things for me when I still feel like I ought to do them myself.
I’m losing abilities I used to have. There are hundreds of things I could do before and I now can’t. I’d sort of got used to the whole before-and-after of the huge crash I experienced five years ago but now I’m noticing the smaller crashes that have happened since. There’s things I can’t do now that I could do last year, last month, last week.
I’m scared and, yes, ashamed.
I don’t like this or want this. Some or all of my recent decline in physical and mental health might be temporary. Or some or all of it might be permanent and I ultimately have no control over which.
I don’t want to feel ashamed. I don’t want to feel scared or angry.
I can talk myself blue about how I’m doing my best, doing actually excellently under circumstances not of my own making. I can point myself toward every possible source of help and adaptation to make my little part of the world as accessible to me as possible. I can say and fully BELIEVE that what my body can and can’t accomplish with and without assistance is morally neutral, neither bad nor good… but the shame is still there and it still hurts.
I have expected for many years that I would become a wheelchair user. Wheels are an increasingly large part of my life now and yet I feel ashamed and scared when I think of asking the NHS to help me get a more suitable wheelchair. Because I feel ashamed of asking, because I feel afraid that I’m maybe not trying hard enough to stay ambulant, because I feel afraid that maybe I’m right to think I can’t keep walking much longer…
I don’t know what this post is about. I have big and scary feelings and I feel alone with them because people (including me, myself) seem to just want to talk me out of them and the feelings remain.
Today I tried to go to the shop. It’s next door to my flat. Getting dressed took over an hour. I came back without several things I meant to get. I forgot to eat any lunch. I couldn’t figure out how to put the shopping away.
I ought not be upset or ashamed about any of this. But I am.