Thursday, June 22, 2006

Preventing Disabilities or Preventing Disabled People

Amanda Baggs recently posted an entry on her blog(which, by the way, has moved) about the attitude that not preventing the birth of a disabled child when you have the opportunity to do so is irresponsible. That got me thinking about a related thing I've noticed.
I belong to a listserv called Chromosome8. Most of the members (not including myself) have or had a family member with a chromosome 8 anomaly. Back in February, a woman posted to say that five years ago she'd aborted her son with an 8p duplication, and was wondering if she'd made the right choice. One woman whose daughter has an inverted 8p duplication with a deletion* said that she loved her daughter dearly because her daughter is "such a beautiful, happy child" yet if she could do it over, knowing her child's condition before birth (which she didn't, which is why this girl is alive now) she would've aborted her because this girl can't walk, talk, use the toilet or eat solids and may never do any of those things.
My first assumption was that this woman must not truly love her child, because she would be willing to prevent this girl's birth. Certainly, if the girl is aware her mother feels this way, that's how she would likely interpret it. But my mother said that woman probably does love her daughter, and is not thinking logically about the issue of aborting her daughter.
I pondered that, and here's my best theory about what she might be thinking: she is viewing her daughter's disabilities as separate from her daughter while her "good points" are part of her, and loves her daughter for those "good points" while hating the disabilities. And for some reason views aborting her daughter as something that would prevent her daughter's disabilities, but not something that would prevent her daughter, as if had she aborted this girl and had another child, the other child would have had all the parts of her daughter she loves, but not the disabilities.
I'm autistic. I have a allistic(non-autistic) brother. My parents love both of us very much. The aspects they love about me are some autism-related things as well as things unrelated to autism (I know this because when I'm feeling bad about myself my parents often try to help me by listing what they love about me). The aspects they love about my brother are some allism-related things as well as some things unrelated to allism. If they had screened before birth and found out I was autistic and aborted me, they would obviously not have gotten a child with the autistic aspects they love.
But even if they viewed the autistic parts of my personality as entirely bad, they still would not have gotten a child with all the aspects they liked about me. My brother is a wonderful person, but he is not me. He is not even what I'd be if I was not autistic. He is himself, and I am myself, and we're both unique. And we're both loved for who we are, not only in aspects we're alike in, but also aspects we're different in. For example, they don't think it's better or worse to have a child who can carry their grandchildren in her womb as opposed to one who must get someone else to carry their grandchildren. They love both of us with our different reproductive strategies, viweing both as important. They view our neurological differences the same way.
But anyway, my point is that aborting a disabled child is not equivalent to giving a PKU kid a low phenylalanine diet (which I'm not sure how I feel about). In aborting a child, you are preventing that child, not just certain characteristics of that child, such as a disability.
Ettina

* her chromosomes are like this:
normal 8
A
B
C
D
*
E
F
G
H
I
J
duplicated and deleted 8
C
B
B
C
D
*
E
F
G
H
I
J

3 Comments:

Blogger The Caulder Family said...

My 25 month old son has an Inverted Duplication of 8p with a deletion. I found out while I was pregnant that he had Agenisis of the Corpus Callosum. I was fully aware that there could be more wrong. But abortion never crossed my mind. And when I look at my beautiful little boy, I don't see his handicaps. I see my son. If I had it to do over again, I would do everything the same. He is an amazing child, and I could not imagine not having him here. He started sitting at 19 months, he can say a few words, he is comprehending things more and more everday. He isn't walking, but his standing has improved a lot. And I am confident that he will walk one day. But if he couldn't do any of those things I still would not do anything any differently. I sure do feel sorry for the woman that aborted her child, because she missed out on something precious.

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