Monday, November 24, 2008

Letter to Peter Byrne

I just sent the following e-mail to a guy named Peter Byrne:

I read your book Philosophical and Ethical Problems in Mental Handicap, and I have some comments on it.
Firstly, since you mentioned in your book that you have an autistic son, I should probably mention that I am an autistic person - at 15 years old, I was diagnosed with atypical autism, also called PDD NOS.
You seem to have a view I refer to as the 'holy norm'. You seem to think that normal (or whatever term you prefer for a person not considered to have a disability) is something real, objective and desirable, rather than defined purely by context. Even when you use analogies in which the norm is different (the society of blind people) or nonexistent (an autistic person living alone in the wild and functioning well in that setting) you persist in your idea that there is something special and desirable about our society's norm that trumps the considerations of the context the person lives in.
I would not consider the autistic person living alone in the wild disabled, because there is no norm to judge that person against. He/she is only disabled in a context where there is a group of people with a norm that he/she does not fit in ways judged to be important. I would consider a sighted person in a society of blind people who judge sightedness as a negative thing to be disabled, because he/she is not measuring up to his/her society's norm in an important way.
That leads me into another thing. You keep referring to the majority opinion ('we would regard him as afflicted') as if there is something inherently desirable about what most people believe. But majority opinion changes - it used to be an accepted truth by the majority of people in British society that the British were inherently superior to African people and had a moral responsibility to take them over and civilize them. Do you think that what is moral right changes over time, and with where you live? Because people's opinions of morality change over time and depend on where you live.
You speak of the way human bodies are supposed to function. Well, we are evolving by a mixture of chance mutations and differential reproductive success. How most humans functioned millions of years ago was different from how we function now, to the point that if you cloned a prehistoric person and put the resulting baby up for adoption to people who were not told that this child was a prehistoric person, they'd probably consider the child - normal for a prehistoric person - to be disabled. In a few million years, someone like you would probably be disabled by their standards.
You say that Down Syndrome and Fragile X result in a 'loss' of function. If you never had a certain ability, how can you be said to have lost it? In order to have lost something, you must have had it at some point (this is one important reason why your analogy of preventing road accidents is different from preventing autism or some other congenital disability).
As for the idea that a certain part of your body is not working, such as that a blind person's eyes are not working, and therefore some loss of function has occurred because of that, has a person lost something because he/she has a nonfunctioning appendix? Is he/she afflicted by this lack of function? Our society says no, because this is what most (if not all) people in our society are like, and we do just fine without any appendix function.
Regarding your idea that prenatal screening and abortion, or avoiding conception, in order to prevent disability does not devalue disabled people: if people argued that it would be a good idea to prevent the birth of gay people, people with a certain skin color, women, or any other oppressed group, would you also say that this is not devaluing them? Personally, I think saying that 'it's a good idea to prevent people like you being born, and a society without any people like you is alluring' is devaluing the group it's referring to. If my parents had decided not to have any more kids for fear that they'd have another kid like me (they didn't - in fact I have a younger brother, born before my diagnosis but well after they knew I was different and possibly disabled), I would consider that to be devaluing me, and people like me.
There is an important distinction between preventing a disability and preventing a person. It doesn't matter if you think I'm valuable but my autism isn't, or if you think nothing about me is valuable, if the net effect is that all of me - not just my autism - is prevented. And though you can draw a distinction based on the ethics and definition of murder between killing a 2 year old with Down Syndrome, aborting a 16 week fetus with Down Syndrome, or choosing not to conceive because you have a 100% chance of the conceptus having Down Syndrome, in all cases you are not preventing or eliminating a disability, but rather a person. And since you are eliminating/preventing a person, that's what you are devaluing. A comparison with the road accident analogy is if, rather than trying to prevent road accidents, you decided not to provide life-saving medical treatment to someone who's just been in a road accident.
I hope this has made you think.

5 Comments:

Blogger shiva said...

Ettina - would it be possible for you to leave blank lines between paragraphs? That would make your posts a lot more readable for me...

(I had been trying to work out for a while why your posts, despite being mostly fairly short and very well/clearly written, were giving me a bit of a headache to read. Possibly it was this one being in italics that made me realise it...)

Anyway, can't really comment directly on this because i haven't read the book - but i think i read a review of it in which it said the main impairments he focused on were Alzheimer's and acquired brain injury, as opposed to impairments/differences people are born with, and thus it wasn't really a book about neurodiversity... unless that was a different book with a similar title, which it could well have been...

6:13 AM  
Blogger Andrea said...

Hi, Ettina

Both Shiva and I have answered the question you asked at Joel's blog (about the intersection between transphobia and racism) with some links you might want to look at to learn more about the topic. (http://thiswayoflife.org/blog/?p=363)

1:19 PM  
Blogger Ettina said...

Shiva - I'll try to do that. This book is certainly not about acquired conditions - the author is the father of an autistic boy, and it's quite clear that autism is his 'prototype' for developmental disabilities.
Andrea - thanks for the links. I'll check them out.

2:05 PM  
Blogger Casdok said...

I hope it made him think to!

11:42 AM  
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1:38 AM  

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