Lisa D. (chaoticidealism) wrote,
Lisa D.

CNN: Those with ALS redefine what it means to be alive

Response to Those with ALS redefine what it means to be alive

An interesting article, and it takes a perspective that's very refreshing in this climate of disability-as-tragedy. Comments on the article, though, still use the tragedy model. Someone with ALS may be happy, surrounded by family, doing purposeful, useful things with their time. But, because they need help with everything, some people still believe they are better off dead.

Yes, people with disabilities would die without help. Wouldn't we all die without help? Think how interdependent we are... Someone to fix your car, someone to build your house, someone to grow your food. Without all of that, most of us would die. Disability just means you need more, or different, help than most. No one should have to be ashamed of needing help, because we all need help, and we live better when we give and get it.

I wonder whether this perspective has contributed to the suicide and homicide of people with ALS--the idea that a life is worthless when you need people to do most things for you. I wonder whether, if we saw that kind of help as perfectly ordinary instead of tragic, we might not literally save the lives of our neighbors and friends with ALS, just by telling them that their lives are worthwhile even if they do not comb their own hair.

It's really just a matter of degree. You don't grow your own food. There are people who don't do their own oil changes, people who don't clean their own houses, people who don't cook their own food, people who don't tie their own shoes, people who don't brush their own teeth. There's no huge difference here, except that some people need help with things that most people don't need help with, and where do you draw the line at "most people" and start pitying them instead of seeing them as ordinary people? Heck, when we were infants, we all needed help with everything. When it's because somebody has a disability rather than because they're two months old, I don't think that should be thought of as absolutely foreign and tragic. It's just another part of everyday life for these folks, like buying food that someone else has grown is a part of everyday life for you.
Tags: daily life, disability
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