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rivkaMore and more, lately, I've been thinking about wanting to have a baby. It's partly to do with ![[livejournal.com profile]](https://www.dreamwidth.org/img/external/lj-userinfo.gif)
wiredferret's pregnancy, and partly to do with turning 29, and partly to do with the fact that finishing my dissertation is finally on the horizon. That's been my self-imposed limit: no babies until they'd have to call me Doctor Mommy.
Someone asked me recently whether my disabilities are genetic, and how that plays in to my decision to bear my own genetic children if I can.
Are my disabilities genetic? Maybe. Some. Yes.
Scoliosis and hip dysplasia are hereditary. Not in a simple way - not a single dominant or recessive gene, for example - but they run in families. As far as my arm and hand are concerned, it might be a genetic mutation or it might be an error in development. Probably an error in development. I also have poor eyesight and allergies and rosacea, which run in families as well. Andcuriousangel has some allergies and some vision problems which are his to talk about, if he likes.
We've talked about the possibility of our children inheriting some or all of my physical problems, and we're planning to have children of our genetic own anyway. If an ultrasound showed that our child had hip dysplasia or a malformed arm, we would not have an abortion - but we probably wouldn't have a second child. That's the balance I'm currently comfortable with.
It's not that I haven't considered whether it would be unfair to pass on my genes. I have. But here are the things that temper that concern:
First, advances in medical science. Already, no doctor in the world would treat a kid with hip dysplasia in the way that I was treated. I was put in a cast from my armpits to my toes from age 3 months to 15 months, and it caused permanent serious damage to my right hip. I had some surgeries later on that they don't even *do* anymore - they don't work. The current treatment for hip dysplasia is much less horrible and much more effective - that's just been in the twenty-nine years since I was born. When I was a child, it was still widely believed that babies didn't feel pain. I wasn't given any pain medication for my early medical treatment - that would never happen now. And in more recent years: artificial hips improved dramatically between the time it was first recommended that I get one and the time I got one. There are new medicines for managing chronic pain that weren't around six years ago when my pain was at its most crippling.
If my child were to have the same problems I had at birth, the outcome wouldn't be the same. Medical treatments aren't the same. In five years or ten, there may be cures for every health problem that currently troubles me. I don't know. I can't project.
Second: my medical problems aren't the only thing my child will inherit. Things like intelligence and personality (or at least temperament, the building blocks of personality) and musical ability are also heritable. I see things incuriousangel and myself that are worth passing on, even if my medical background isn't free and clear.
curiousangel and I are probably going to end up with a short kid with allergies and vision problems and a big nose and fair sensitive skin, and possibly with seriously messed-up joints. But we're also probably going to have a blue-eyed, dark-haired, intelligent, careful, affectionate kid with a good singing voice. Our child will have no family history of breast cancer or heart disease, and will have several ancestors who lived into their 90s. If you consider only my hypothetical disability-related genes, then yes - it looks as though it would be better for the species if I don't breed. But my hypothetical disability-related genes don't exist in isolation. They're part of an overall package of genetic inheritance that, to me, is of value.
I've spent enough time being a visibly disabled person in American society that I know I can expect to hear these questions if I do become pregnant - even from strangers. A lot of people are convinced that they know whose genes are worthy of perpetuation and who should refrain from reproducing for the good of the species. I suppose that it's a good idea to start practicing my answers. And my cold stare. *grin*
wiredferret's pregnancy, and partly to do with turning 29, and partly to do with the fact that finishing my dissertation is finally on the horizon. That's been my self-imposed limit: no babies until they'd have to call me Doctor Mommy.Someone asked me recently whether my disabilities are genetic, and how that plays in to my decision to bear my own genetic children if I can.
Are my disabilities genetic? Maybe. Some. Yes.
Scoliosis and hip dysplasia are hereditary. Not in a simple way - not a single dominant or recessive gene, for example - but they run in families. As far as my arm and hand are concerned, it might be a genetic mutation or it might be an error in development. Probably an error in development. I also have poor eyesight and allergies and rosacea, which run in families as well. And
curiousangel has some allergies and some vision problems which are his to talk about, if he likes.We've talked about the possibility of our children inheriting some or all of my physical problems, and we're planning to have children of our genetic own anyway. If an ultrasound showed that our child had hip dysplasia or a malformed arm, we would not have an abortion - but we probably wouldn't have a second child. That's the balance I'm currently comfortable with.
It's not that I haven't considered whether it would be unfair to pass on my genes. I have. But here are the things that temper that concern:
First, advances in medical science. Already, no doctor in the world would treat a kid with hip dysplasia in the way that I was treated. I was put in a cast from my armpits to my toes from age 3 months to 15 months, and it caused permanent serious damage to my right hip. I had some surgeries later on that they don't even *do* anymore - they don't work. The current treatment for hip dysplasia is much less horrible and much more effective - that's just been in the twenty-nine years since I was born. When I was a child, it was still widely believed that babies didn't feel pain. I wasn't given any pain medication for my early medical treatment - that would never happen now. And in more recent years: artificial hips improved dramatically between the time it was first recommended that I get one and the time I got one. There are new medicines for managing chronic pain that weren't around six years ago when my pain was at its most crippling.
If my child were to have the same problems I had at birth, the outcome wouldn't be the same. Medical treatments aren't the same. In five years or ten, there may be cures for every health problem that currently troubles me. I don't know. I can't project.
Second: my medical problems aren't the only thing my child will inherit. Things like intelligence and personality (or at least temperament, the building blocks of personality) and musical ability are also heritable. I see things in
curiousangel and myself that are worth passing on, even if my medical background isn't free and clear.curiousangel and I are probably going to end up with a short kid with allergies and vision problems and a big nose and fair sensitive skin, and possibly with seriously messed-up joints. But we're also probably going to have a blue-eyed, dark-haired, intelligent, careful, affectionate kid with a good singing voice. Our child will have no family history of breast cancer or heart disease, and will have several ancestors who lived into their 90s. If you consider only my hypothetical disability-related genes, then yes - it looks as though it would be better for the species if I don't breed. But my hypothetical disability-related genes don't exist in isolation. They're part of an overall package of genetic inheritance that, to me, is of value.I've spent enough time being a visibly disabled person in American society that I know I can expect to hear these questions if I do become pregnant - even from strangers. A lot of people are convinced that they know whose genes are worthy of perpetuation and who should refrain from reproducing for the good of the species. I suppose that it's a good idea to start practicing my answers. And my cold stare. *grin*
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no subject
Date: 2002-12-02 11:48 pm (UTC)I've known people get good results with "Are you suggesting my parents shouldn't have had me?!" And unless you think they shouldn't - I've come across one person who felt that way, but only the one - I think there's no reason not to go ahead, beyond the practicalities of what you and
no subject
Date: 2002-12-03 04:45 am (UTC)Heh. When I was a lot more disabled than I am right now, I actually had people say to me, "I could never cope with what you're going through. I think I'd kill myself if I were in your shoes." They never seemed to understand how profoundly insulting it was to suggest that someone else's life wasn't worth living.
no subject
Date: 2002-12-03 10:43 am (UTC)O.o
dotdotdot. I think you're a better person than I -- if anyone said that to me, I would've attempted to wrap my hands around their throat and squeezed. A lot.
the value of life
Date: 2002-12-03 11:17 am (UTC)and which is a very far cry from saying "kill yourself, you worthless slug".
...
as to having children if one has genetic defects -- i care vastly more about people's parenting abilities and them having children for what i consider "good" reasons than i care about their genes.