“Battling Disease”
In an interesting post at Girl w/ Pen, Alison Piepmeier discusses her discomfort with using battle metaphors to describe life with illness and disability:
“I’d be politically troubled or offended if someone had referred to the little boy… as “battling” his life in a wheelchair, or if people suggested that my daughter was “struggling against” Down syndrome. Down syndrome and paralysis aren’t war zones, they’re simply parts of the lives of some people.”
“I have a brain tumor, and there are things I need to do to take care of myself, but no level of armored-up embattlement is going to make it go away. I don’t love it, but it’s part of my body.”
I’ve never thought much about this subject before; actually, that’s what I really like about posts like this one.
At the same time, down syndrome and other disabilities do force people to struggle to do tasks or live life in the way they might want to. They are part of who they are, and part of daily life, but are also often present obstacles to be overcome. So in that sense, I don’t find the use of those terms that bad. And just because these permanent conditions do not go away does not mean that a “struggle” or “battle” isn’t taking place, just that it never ends. My brother is severely disabled and depending on his mood and condition, sometimes I feel terms of conflict are absolutely a propo to what he is feeling or doing. Perhaps a better formulation would be to adjust subject from “struggling with Down syndrome” to “struggling with x obstacle caused by Down syndrome”.Report
@BCChase, That’s an interesting way of looking at it.
I have a very close relative with mental illness and she often talks about managing the illness as “doing my work”. It might be interesting to look at illness and disability as involving different work than the rest of us have, and perhaps additional work. On a day-by-day basis, that’s certainly how it seems.Report
@Rufus F., I think it was Luther who referred to his body as “Brother Ass”.
Some of us just have donkeys that are a bit more stubborn than others.Report
@Rufus F., sometimes it is different, additional work, and sometimes the experience is more transformative. With my brother, there are days he works hard to experience what a normal person would, and days when he seems an entirely different person with no desire to engage life at all. It’s these days when he is cruel to those around him, often because he is fighting his own emotions. But this is why the language of disability is difficult – every experience is different.Report
Thanks for the shout-out, and for the comments. I’m still not completely sure how I feel about this, either, but I’m glad my musings were thought provoking.Report
@Alison Piepmeier, No problem! It’s a fascinating subject. Thanks for musing on it.Report
@Alison Piepmeier, I appreciate someone writing about it, because there aren’t always a lot of venues for discussions about concepts surrounding the disabled. And every different person and condition forms a different experience, so it is hard to develop a language of experience without musings like these.Report
One of the (few) good consequences of 9/11 is that sportscasters stopped using military metaphors to describe games. Having seen actual death and destruction up front made it clear how inappropriate it was to describe a man’s attempt to throw a ball past another man as a “battle”, or a man who plays especially hard as a “warrior”. It didn’t last, alas.Report