I went to this panel/performance at Access Living last Friday. It was on the intersections between disability, race and community. Very interesting. There was one thing that the moderator said, though, that really struck me. It's something I've read and taken note of before, but for some reason hearing it in this context really drove the point home.
He made the point that disability and disease challenge the idea of "the individual." In American society, we're pretty much taught to take care of ourselves. Individualism is extremely important to the way we conceptualize our bodies and our minds. The "I" is at the center of the American dream. If I work hard and educate myself, I can rise through the ranks of society. So, what happens to this concept when a body must depend on others to perform certain tasks, or even to make it through the day?
This is more of an issue for some types of disability than others. With Crohn's, for instance, as long as it's maintained, I retain a great deal of autonomy. However, when I'm not doing well, I need people around me that understand my needs and can help me out. This is not an easy concept.
When I'm in flare, I'm dependent on the help and care of others and that is just not something that feels good, no matter who it is. This is not to say that I'm not grateful for those friends and family members who've supported me in the past. I am. I just think that this idea of the individual is at the heart of the denial that surrounds disease and disability. We the people love our self-governance, and disease threatens it. When one body becomes dependent on another to perform simple tasks, it questions the individuality that our country was literally founded on. Freedom of speech? Religion? That means the freedom of the individual to do what he/she wants. Disease doesn't always afford us that option.
On a more personal level though, I think this idea of the individual directly inhibits our ability to accept our disease and to ask for help before a situation becomes catastrophic. "I don't need help... I've got it.... I'm fine." How many times have these words gone through my head? And all because I have this idea that asking for help means handing over control. This is not true, of course, but that's what it feels like. Like suddenly I don't make my own decisions. They're made by committee, and I may or may not have input.
He made the point that disability and disease challenge the idea of "the individual." In American society, we're pretty much taught to take care of ourselves. Individualism is extremely important to the way we conceptualize our bodies and our minds. The "I" is at the center of the American dream. If I work hard and educate myself, I can rise through the ranks of society. So, what happens to this concept when a body must depend on others to perform certain tasks, or even to make it through the day?
This is more of an issue for some types of disability than others. With Crohn's, for instance, as long as it's maintained, I retain a great deal of autonomy. However, when I'm not doing well, I need people around me that understand my needs and can help me out. This is not an easy concept.
When I'm in flare, I'm dependent on the help and care of others and that is just not something that feels good, no matter who it is. This is not to say that I'm not grateful for those friends and family members who've supported me in the past. I am. I just think that this idea of the individual is at the heart of the denial that surrounds disease and disability. We the people love our self-governance, and disease threatens it. When one body becomes dependent on another to perform simple tasks, it questions the individuality that our country was literally founded on. Freedom of speech? Religion? That means the freedom of the individual to do what he/she wants. Disease doesn't always afford us that option.
On a more personal level though, I think this idea of the individual directly inhibits our ability to accept our disease and to ask for help before a situation becomes catastrophic. "I don't need help... I've got it.... I'm fine." How many times have these words gone through my head? And all because I have this idea that asking for help means handing over control. This is not true, of course, but that's what it feels like. Like suddenly I don't make my own decisions. They're made by committee, and I may or may not have input.
Excellent post Maggie! I too often hate asking for help. I don't want to feel different (even though I am).
ReplyDeleteYou spoke about individuality, and I wanted to point out that one of the cool (and frustrating) parts of Crohn's is that all cases are different, making the disease an individual in itself.
Thanks, Tim!
ReplyDeleteInteresting point! It's true, living with Crohn's is a very singular experience.
Lovely post, Maggie.
ReplyDeleteI like to think of asking for help as naming your community. But there are all sorts of factors that threaten that notion of community (capitalism, competition, etc.). Resisting those threats is just as important as resisting boxed up definitions of disease and disability.
Write on, grrl!
Maggie...this is REALLY important. Especially to me, a female teacher at a women's college. My understanding is that women are more likely to collaboratively learn...I know I experience it in my classes, both technique and theory. Yes, the individuals come to the table or studio with what they have and are willing to share, but the really juicy stuff comes when we are figuring out stuff togther. My experience is, usually, within a group of women, you sometimes don't even need to ask for help---it is being offered. Now, you do have to remember to TAKE that help... I think this is a great starting place for your residency next year. This and the idea (from the Nov 15 post) that we need to address our lifetimes, not just this current moment. (The current moment IS important, but like most everything else, we must find the balance between the moment and the lifetime.)
ReplyDelete