Can we stop with the news reports calling [Elizabeth Edwards’s] cancer ‘terminal’? Please? Yes, she does have cancer, but it isn’t terminal. It’s incurable. There’s a helluva difference between the two.
Some commenters argued that calling Edwards’s cancer “terminal” was correct according to various legal and medical definitions. Which prompted Bint to ask this incredibly awesome question: “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. We exist. Diagnosis is human beings’ attempt to explain our existence to themselves. (All science–and mythology, and organized religion–are ways for people to make sense of the world they live in). As such, conditions are invented as much as they are discovered.
I could, for instance, categorize people based on which movies they reminded me of. But such a scheme would tell you much more about my own biases and interests than about the people I was describing. When John Langdon Down came up with his ethnic classification of idiots, he was influenced by (1) a belief that non-white peoples and idiots were inferior to Caucasians of average intelligence, and (2) by his own love of studying how the human races differed from each other, as well as how they were related: “These examples of the result of degeneracy among mankind, appear to me to furnish some arguments in favour of the unity of the human species” (p. 217).
Leo Kanner and Hans Asperger both called their patients “autistic.” And both of them used that word very differently than psychiatrist Eugen Bleuler had used it 30-odd years before. Kanner had to explain his use of the term “autism”:
It may therefore appear at first glance that I followed the example of the pseudo-etymologists who claimed that the Latin word for dog derives from the animal’s inability to sing (Canis a non canendo) and the word for grove from the absence of light (Lucus a non lucendo). Nevertheless, in full recognition of all this, I was unable to find a concise expression that would be equally or suitably applicable to the condition.
Or take the American term “learning disability.” The person who came up with it (Dr. Samuel Kirk) was describing a group of children whose disabilities had been called “minimal brain dysfunction.” He was also a teacher; thus, he viewed these disabilities as educational and categorized them that way. Unfortunately this led to the myth that learning disabilities are only academic problems that disappear outside of school.
Thus, diagnostic labels are ultimately the creations of the people defining them. Non-disabled experts on our conditions don’t make us what we are; they merely put us into words. (And I dislike some of the words they use). As Bint suggests, their words should not have any more weight than ours do.*
* For example: I relate to autistic people in some ways–partly because of my neurotype, but also because autistic people introduced me to disability rights and I’ve learned a lot from them–yet wouldn’t fit any “expert” criteria for any official autistic spectrum condition. Luckily, the autistic community has a word for people like me: cousin.