silence and disability
I don’t like telling people about my disabilities. When I do, I get one of four responses:
1) the “disbelief” response
Since I don’t walk with a stick, when I limp and struggle people often don’t pick up on it. My pain is something I try to work around. So they don’t realise that I’m numb on one side of my body, struggling with painfully overwhelmed senses, or cramping up so much I’m considering whether I’ll make it to my nearby destination without collapsing by the side of the road.
2) the “doctor” response
This is excessively common. People think they are helping by suddenly considering themselves to have all the answers as to what’s wrong with me and what can be done about it. All sorts of cures, believing they have the answer my (actual) doctors and specialists don’t. They think their common knowledge on the subject is greater than my own specific reading (over the course of years!).
3) the “recognition” response
This response is the idea that, since they experience something they deemed similar once or twice, they understand how I experience and live with my disability. News flash, people - unless you experience my decline over the same life-long, deteriorating conditions I have, you have no concept of what I’m going through. You had numbness or weakness in your arm for a while? That’s great, but if it was a one-off, then that’s all it is - a single, one-time issue. If you do have something you feel is related, that doesn’t mean I won’t be insulted by your generalising of my disabilities. If you’re disabled in another way, that doesn’t mean you understand my pain or that I understand yours.
4) the “pity” response
The wide-berth people give me, the idea that, since my body doesn’t work as it should, that I am incapable of doing anything. I have fought my own self-pity. I have worked to find the areas of interest and hobbies that can occupy my time without crippling me. I have found areas where I shine above most people. Don’t look down on me as lesser. Don’t pity me.
What people don’t seem to realise is that, not only are each of these responses insulting my understand of my own pain and experience, they take away from the power I have to treat and live through my own disabilities. I’d prefer people were to acknowledge my unspoken pain by either being cautious with me if they detect a problem, or asking (in an appropriately concerned tone) if I’m okay. The latter, however, only works for people who know me well. Regardless of how well meaning someone may be, I will not explain my physical and psychological problems to people who border on being strangers. I want them to understand that, while my problems may make work and some physical activities impossible for me, I have a sharp mind and excellent skills and workarounds in a few areas. These do only make me further invisible as a disabled person, and shift the blame (to many people) from the innevitable result of my inherited conditions to my own actions. If I do avoid these things that others would define as responsible, they instead consider me “boring” for having less I do and less to speak of. This is one of the many hypocrisies of being a person with disabilities.
