Saturday, August 23, 2008

Disability Culture: Defining our Lives

In the comments of another post that I wrote a few days ago, a few people questioned the idea that Elizabeth Edwards’ cancer is incurable but not terminal. Different authorities were cited and used as the basis for how the commenters defined what conditions should rightly be called “terminal”. Some appealed to legal definitions of it. Others saw doctors as the experts on this topic. Really, this is nothing new. It’s an issue that PWD (people with disabilities) have been speaking out about for many, many years.

Why is it those who do not have the condition are considered the experts on how it should be viewed? Sure, I can accept the fact that doctors are experts on how to treat diseases like cancer. However, does that make them qualified to determine how diseases should be viewed? I’m not so sure about that. Instead, I wish people would consider the fact that PWD are perfectly capable of deciding how they should view what’s going on with their body. It’s more than a little bit paternalistic to try to make that decision for us.

It seems that non-disabled people sometimes have a hard time understanding that disability is cultural, not medical. What is seen as a terminal illness to some certainly isn’t to others. For example, let’s say the average lifespan for an individual in a particular place is 50 years old and the patient is already 50 years old, should we call a disease that is likely to kill them within ten years one “chronic” or “terminal”? After all, we all die of something. Should we call whatever might kill us (e.g. diabetes, pneumonia) “terminal”? Why are the lives of people with cancers like the ones Elizabeth Edwards and I have described as terminal when others are not even though they may all result in death eventually.

The truth is, there’s a whole lot of room between incurable and terminal and that gap is only widening as I’ve experienced first hand. For many people, cancer is quite manageable even when no cure can be expected. Because so much of medicine is focused on curing people, when a patient has conditions that can’t be wiped out, it’s often viewed as a failure. However, there’s no reason why our lives should be measured according to the lives of others for several reasons. What’s considered a normal lifespan has varied through the ages and still varies throughout the earth. But who decides what’s normal? In an ablist system, what’s normal will almost always be defined as that which meets up with non-disabled people’s lives.


lauredhel said...

Wow, I'm disgusted at the comments you got over at Feministe. "You're wrong!" "I know more about this than you do!" "Where'd you get your information, Wikipedia?"

Keep on keeping on- tackling ableism in the feminist community is a huge job, and I hope a few people got some food for thought (and seeds for action).

bint alshamsa said...

Yeah, it's really funny how people make so many assumptions about PWD. It was pretty obvious that a few of them didn't realize that the reason why I know about all this stuff is because I have and I am living these issues. I do hope that maybe some of those who read it will think about this stuff. Even if it doesn't change their mind right away, hopefully it will contribute to them considering where these paternalistic ideas might be stem from.

Carl said...

Great post.

It's all a question of how the terms are defined. Some people are too thick to realize that language is fluid, and definitions aren't absolute.

I've got one of those "incurable but treatable" cancers, too (follicular NHL). I'm nowhere near considering myself terminal, and I hope I won't be for many years.

As far as I'm concerned, life is terminal. Big deal.

"A Pastor's Cancer Diary"

Tera said...

Why is it those who do not have the condition are considered the experts on how it should be viewed?


Disabled people are natural phenomena. Diagnosis is a way for people to make sense of the phenomena they're observing. (That's what all branches of science--as well as mythology and organized religion--do).

When John Langdon Down categorized "idiots" according to what ethnic groups they most resembled, he was influenced by his own biases and interests. (He was very interested in ethnology, which was really popular at the time).

Non-autistic autism "experts" often say that autism is primarily a social disability. Some autistic people argue that it's not.

Disability labels are really just non-disabled people deciding what to call us. Why shouldn't we have a say in what to call ourselves?