In studying the sociology of disability, I came across the quote by sociologist Elliot Freidson from his book Profession of Medicine.
[For people with disabilities or chronic illness], acceptance by others hinges on maintaining properly undisturbed social relation with them... Legitimacy is conditional on limiting demands for privileges to what others consider appropriate. (p. 235)In other words, abled people (TABs) will help people with disabilities (PWD) as long as the TAB thinks the PWD knows his/her/ou's place and is not asking for too much.
When I read this, my brain went, "Yes! That's part of my life! That's why I am studying sociology of disability." And it helped me understand part of why I am afraid.
I can only speak for myself, but I see this attitude all the time. 'We will help you because you are disabled, but you better not get uppity about it.' And this idea keeps me submissive sometimes. Because I need help sometimes. And it scares me what would happen if I was "too much" and offended someone. Because then who would take me to the ER? Or get me food when I can't do it myself? Would my professor give me a worse grade? Would my doctor stop treating me? Or...? It has happened to me and many other people, the consequences of "asking for too much," asking to be too much.
But what really upsets me is when this fear becomes part of my personal life. I have many wonderful people in my life. And most of them would never do this to me--withhold care because I pushed the limits set for me as a disabled person. But at the same time, they grew up in this society, grew up learning the same disablism I did. So a little part of me is scared that maybe they would. Is scared of what would happen if one day I was just a little too much. And I wonder: what would a little bit too much be for my friends?
It makes me angry that I feel the need to be submissive to doctors and professors and other people when it comes to my disability.
But what really makes me angry is that disablism makes just a little part of me afraid of my friends. That's wrong.
I know what you mean about being afraid of your friends. I'm always scared that if I ask a little too much then they'll say 'oh the hell with it' and run away..
ReplyDeleteGreat post! I feel it so much and realized that to get the help I need, those around me would need to treat me as a princess: my needs first, even my whims need to be treated with reverance. NONE of my family or friends could cope with anything near that!
ReplyDeleteI have had to enter into a wholesale rejection of many former friends who were terribly disablist about my 'needs'. I'm better off without them, and not so needy too!
ReplyDeleteWhat can I say? Me too. You put it really well.
ReplyDeleteThank you all :) And yes to the worries that my friends will just run if I ask too much. Sometimes they offer even, and I say no. Because even if the help would be really appreciated now, I'm worried that if I take the offer now, the help might not be there when i next need it more.
ReplyDeleteOh boy, does this fear hit home. You really made the points so well, and I love that quote. (Well, actually I hate that it is true, but I love that it sums things up so perfectly.)
ReplyDeleteI know I'm 18 months late in responding, but this really resonnates for me. As a deaf person, I am often unable to fully participate in social communication around me. I do know some nice people who at least try to face me when they talk (even if not talking to me per se) so I can have a chance to try to lipread them. But lipreading is so imprecise, there is still a lot I'm going to miss even in ideal circumstances. I usually am afraid to speak up to say, "I know you're trying, but this isn't really going to work, what I really need is for someone to write down an on-going summary or transcript of what is being said." Sometimes even in a context where I know the people probably actually would do this if I asked. Because there have been so many times when even simply asking for someone to repeat one line I missed has resulted in someone blowing up at me for wanting too much, demanding too much, for not being "reasonable" in demanding access to "every minute of conversation" (when I've actually already sacrificed having access to a LOT). And I get afraid of asking too much now ... if maybe I will need their help in giving me access to some other, much more important information later. I have learned far too many times that the patience of most hearing people is in most cases such a very finite supply: it's something I do actually need to ration carefully for at least some people. The problem is, I end up rationing it very strictly even in cases where really I don't need to be quite so strictly careful.
ReplyDeleteI have been able to overcome my fears enough to ask for what I REALLY need in a few situations. But this is something I still need/want to work on learning to ask for, at least in situations where intellectually I know it's safe to do this.