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.
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- Aging Is (Not) Unnatural by Laurie Toby Edison August 19, 2009
- Bonjour! by Bint Alshamsa July 14, 2009
- What’s Accessible To You? by Renee August 28, 2009
- Disabled Character: Able-Bodied (Emaciated) Actresses Only, Please by Laurie Toby Edison August 15, 2009