And, now that I've read through the rest of the comments on the post, I'm glad I commented without reading them at first, because, honestly, it never occurred to me that it was any of my business to question this couple's fertility/parenting choices based on what little I could possibly know about them from this article. And, as so many other people have said, just across my immediate family - my parents and brothers and I - we have so many mental/physical disorders that doubtless presenting a list to this crowd any/every one of us would be questioned on the "wiseness" of our collective decisions to procreate. And yet, there are nine beautiful, (relatively, but not entirely) healthy children in that next generation (none of them mine, because not having children is my choice) that our small world would have been much worse off if they had never been born.
Judging other people is easy, but I always see those judgments as a much more telling insight of the person doing the judging. #childbirth
I just want to add that Osteogenesis Imperfecta is an autosomal dominant genetic defect - this means there is a 50% chance of passing the condition to a child. OI is most often inherited from a parent, but can also be the result of a "de novo" (sporadic) mutation - as in my own case. Neither of my parents have OI. So for those of you so worried about the selfishness of the parent potentially passing on a condition to a child, keep in mind that children are born all the time with conditions that their parents don't have (and vice versa)! #childbirth
@Cattitude: I think it's always good to remember that even those who have so-called perfect genes (or think they do) are still at risk of having a child with a genetic abnormality.
Also, some people may think it's selfish for someone with special challenges to have children, but many more think it's wonderful. I very deeply value being raised in a family with a disabled parent. I learned a lot about empathy, among many other things. And while I sometimes wished my dad could play catch with me, I was always glad to know that he wanted to. He is a wonderful father and I'm lucky to have him. #childbirth
@AnotherJenn: You raise another excellent point about diversity and what challenges can teach us. While being disabled/differently-abled can be painful and exhausting, it can also be challenging, uplifting, and educational on so many levels, for ourselves as well as our families. My own disability has taught me many life lessons and made me a stronger person, and I don't regret that at all. #childbirth
@Cattitude: Good for you. I have to admit at being incredibly annoyed when anyone else tries to use the "you/your dad is so strong because of it all" line on me because I feel like we're strong enough, dammit, and I'd like him to not continually get worse and worse (the last 10 years have been extremely difficult for him). That line can be used in a silencing or minimizing way sometimes. At the same time, it's true.
I hope this makes sense? It's like, there are two narratives about disability. One is that you should just give up trying to have any kind of normal life and just accept whatever tiny bits of integration may come your way. The other is that you're an inspiration, a hero, an incredible person, just for going about trying to have a normal life. You can't express fear or pain because then you don't fit in the hero box. It's hard to deal with so people pretend like you have a supernatural ability to deal with difficulties. Both can be silencing.
But, yeah, I hate this idea that being disabled or having a disabled parent is some huge tragedy or is unfair to the children. Sure, parts of it suck, but parts of everyone's life suck. There are a lot of wonderful things about it too. #childbirth
@AnotherJenn: I'm glad to hear your thoughts on this topic; it's reassuring for when my girlfriend and I finally decide to have kids (10-12 years from now, most likely).
I know exactly what you mean about the inspiration/tragedy dichotomy, and you put it very well. Neither of us (she has CP, I have Asperger's syndrome) are anything but normal people. We just want to get on with our lives, not be told what incredible people we are for doing "so well" (because doing average is always "so well" when you aren't quite average, yourself, of course). #childbirth
@Her Grace: Oh good, I'm glad someone else understands. And I'm glad my thoughts about my childhood were reassuring to you. :)
I went through a very rough patch in high school where I was very angry that my dad was sick all the time (he was fairly healthy when I was young except for the wheelchair, but he started having some major problems when I was about 16). But I never blamed my parents for that. I had a few friends whose young, healthy parents had strokes, heart attacks, accidents, etc. Life gives you no guarantees that you'll always be the ideal of physical health. Anyway, I came out of that realizing that I'm one of the lucky kids because I had two loving, knowledgeable, competent, wonderful parents. Lots of people aren't anywhere near as lucky as me. :) #childbirth
It seems that the general trend of comments here is to question or judge the rightness or morality of this woman's decision to reproduce, and to call her selfish for doing so. I also see a lot of concern (faux concern?) over the possibility of this woman passing on her genetic disorder. I am always a bit uncomfortable with that line of thinking, as I don't think we have a moral imperative to avoid passing on genetic traits considered "undesireable." We all pass on genes, good and bad, when we choose to have children, and you do have to question where we draw the line at things that "should" or shouldn't be passed on. There is a lot of push-back from disability advocates on the notion that the able-bodied have a say in judging the quality of life of those who are differently-abled. Even in this woman's case, while she does suffer physical consequences of her disorder, she also has a full family life, and appears to be quite content. So, is it selfish of her to risk passing on her genetic mutation to her children, or to initiate high-risk pregnancies? I have heard similar arguments about women who want to have children at later ages, women who have multiples, women who use fertility drugs or in vitro, and same-sex couples who want to have children. What about the children?! starts to sound a bit disengenuous after a while. #childbirth
See the picture above? That right there is what I talk about when I talk about supporting a woman's right to choose. This is what gets lost when we allow the anti-choice movement to frame the debate.
She chose to proceed with her high-risk pregnancy because it's what she WANTED. It was her choice. No one forced her to carry that baby. If she chose to terminate, that would have been her decision as well.
Regardless, she made a CHOICE. She's entitled to that. We should all be allowed the same. #childbirth
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Judging other people is easy, but I always see those judgments as a much more telling insight of the person doing the judging. #childbirth
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Also, some people may think it's selfish for someone with special challenges to have children, but many more think it's wonderful. I very deeply value being raised in a family with a disabled parent. I learned a lot about empathy, among many other things. And while I sometimes wished my dad could play catch with me, I was always glad to know that he wanted to. He is a wonderful father and I'm lucky to have him. #childbirth
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I hope this makes sense? It's like, there are two narratives about disability. One is that you should just give up trying to have any kind of normal life and just accept whatever tiny bits of integration may come your way. The other is that you're an inspiration, a hero, an incredible person, just for going about trying to have a normal life. You can't express fear or pain because then you don't fit in the hero box. It's hard to deal with so people pretend like you have a supernatural ability to deal with difficulties. Both can be silencing.
But, yeah, I hate this idea that being disabled or having a disabled parent is some huge tragedy or is unfair to the children. Sure, parts of it suck, but parts of everyone's life suck. There are a lot of wonderful things about it too. #childbirth
11/09/09
I know exactly what you mean about the inspiration/tragedy dichotomy, and you put it very well. Neither of us (she has CP, I have Asperger's syndrome) are anything but normal people. We just want to get on with our lives, not be told what incredible people we are for doing "so well" (because doing average is always "so well" when you aren't quite average, yourself, of course). #childbirth
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I went through a very rough patch in high school where I was very angry that my dad was sick all the time (he was fairly healthy when I was young except for the wheelchair, but he started having some major problems when I was about 16). But I never blamed my parents for that. I had a few friends whose young, healthy parents had strokes, heart attacks, accidents, etc. Life gives you no guarantees that you'll always be the ideal of physical health. Anyway, I came out of that realizing that I'm one of the lucky kids because I had two loving, knowledgeable, competent, wonderful parents. Lots of people aren't anywhere near as lucky as me. :) #childbirth
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OMG, look how happy they both are!
And I've seen pregnant women who are all belly, but she is literally ALL belly.
Sorry, I can't snark or judge. They just look too happy. #childbirth
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She chose to proceed with her high-risk pregnancy because it's what she WANTED. It was her choice. No one forced her to carry that baby. If she chose to terminate, that would have been her decision as well.
Regardless, she made a CHOICE. She's entitled to that. We should all be allowed the same. #childbirth
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