In Which I Find Myself in Rare Agreement with Sarah Palin (sort of)
Researchers at Stanford University are working on a new prenatal screen for Down’s Syndrome that would be based on a maternal blood test rather than amniocentesis, taking the risk to the fetus out of the process. I fully support women having as much prenatal information as they can get. I fully support a woman’s right to decide whether or not to carry any pregnancy to term. So this new test is good news.
But I wish that good information about and services for people with Down’s Syndrome was growing as fast as technology to test for it prenatally. I worry not that “unborn children” will be aborted, but that fear about Down’s, leading to fewer Down’s births will in turn lead to less exposure to people with Down’s in society, leading to…less understanding about and more fear of Down’s.
The easier it becomes for typically abled people to avoid getting to know people with disabilities, the less understanding there will be of them, the less accommodation will be made for them and the smaller the range of human experience society will find acceptable. While it is every woman’s personal decision to raise a child with a known disability or not, I think more would probably choose to do it if we as a culture were not so filled with fear and loathing of anyone with physical or mental ability that falls outside an ever narrower range of “normal.”
I may be in the minority, but I believe people with Down’s Syndrome are part of a complex range of human variance and humankind would be poorer if no more people with Down’s Syndrome were ever born. Medical testing is helpful. But I hope that as a society we can expand our understanding of who is fully human to include those people with Down’s who end up in our midst anyway.
Image: Huffington Post
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I’m absolutely pro-choice, but I’m also bothered that some physicians are pushing screening for Down Syndrome on every family. There is just such a message of ableism here. I understand that some families feel that they aren’t fit to care for a child with a certain degree of special needs, and I respect their decisions to place their children in residential schools or foster care when they feel this is the most loving thing they can do for their children. But I am disturbed that families are being pushed to screen for Down’s with the implication that this will allow them to choose whether to have these children. I’ve been a clinician working with children and adults along the whole range of abilities for years now, and I can tell you that people with Down’s generally have some of the “easiest” needs to deal with, if we’re even going to make blanket statements about raising children in that way. So what happens to all the families who opt out of raising a child with Down’s, but then their genetically typical child grows up to have a lower I.Q. than your average person with Down’s? Or what happens when youre genetically normal child gets hit by a car and needs a ventilator and diapers and a feeding tube? What happens when your child of superior intelligence develops emotional problems that are much more intense to deal with than your average child with Down’s? When someone agrees to raise a child, they really need to be agreeing to raise whatever child they get — not agreeing to raise only a typical child. I don’t like the message this sends, which is that the geneticist has weeded out any possible flaws in your child. Only a very small percentage of disabilities can be detected by in-utero genetic screening. Can you imagine the outrage if ob-gyns were to extend this kind of screening to other disabilities? “Given that you and the baby’s father aren’t very bright, there’s a very high chance that this child won’t be very bright. I’d like you to consider terminating your pregnancy.” “Ma’am, studies show that since you live in the projects, your child is 394793739 times more likely to have emotional difficulties. We’d rather that you reconsidered giving birth to this child.” Eugenics, anyone?
Our neice competed at the Special Olympics this summer for the first time. It was great to watch her compete and to see her pride in achievement, but it was also great to spend time as a family in an environment where her disabilities were the norm, not the exception. No one stared at us while we walked around the grounds. No one glared as we ate lunch together in public, the way people often do when we eat together in non-disabled-norm environments due to her vocalizations and self-regulating behaviors. Everyone there had the experience of sharing life with a loved one who has some sort of chronic disabling condition, and the sense of community enabled everyone to relax and kick back in a way that is so rare for such families. I had never even really considered how stressful it is to navigate regular public life in my niece’s company before I spent a day with her where SHE was the “norm” to be celebrated.
I want that for her and for us every day, not just at the Special Olympics. I want everyday life to be significantly more accomodating and accepting of people with various disabilities, including Downs. I know I was not nearly as comfortable with people like my niece until I became her auntie and came to know her intimately — there’s no substitute for that. I roll my eyes severely at sentimental hooey suggesting she’s a Special Angel put here on Earth to teach humanity to be more accepting, but I give a firm nod to everyone who knows she’s a full-on person with a lot to contribute. Yes, she requires extra care that complicates the lives of those who love her. But she’s worth it, and she gives back in large doses.
I have no issue with women who terminate pregnancies that will result in disabled people, but I too wonder if such a decision can truly be made in an informed manner when so few people have regular ongoing contact with children and adults who do live with disabilities. I also wish there was a way to test for severity in cases like Downs, since the range of affect varies so much from individual to individual. I don’t know whether that knowledge would make a termination decision any easier, but it’s information I wish was available at the crucial time.
First of all, I think all women have the right to choose whether to carry a pregnancy.
That said, I do think that if there was more education, better services and supports, and less prejudice against the disabled, people wouldn’t be so apt to think they couldn’t do it.
Of course kids with disabilities pose unique challenges that are inherent to the disability, but what makes it so impossible for some people to fathom raising these children is more about society’s response to them (or lack thereof) than to the disability itself. It is unfortunate when expecting parents find themselves in these situations that instead of being given help, support and education about all of their options, doctors generally encourage them to terminate. Since during a pregnancy (amnio usually at about 18 weeks) time is of the essence, parents don’t have time to educate themselves about disability before they have to make a choice. Hopefully, new advances in testing will allow parents more time. However, I don’t think things are really going to change until we as a society change and parents can go into a pregnancy knowing that no matter what abilities their child has, he will be supported, educated and included in society.
erni–
As an adoptive mom I can tell you that these babies are “difficult to place” but they do find homes often. Many people go out of their way to adopt kids with special needs. I know of one family with three young children with Down’s–all adopted BECAUSE they have Down’s.
That’s a happy story. I’m sure there are sad ones too, but it isn’t impossible to place these children.
THANKYOU– No, thank YOU for sharing your sptry and best wishes to your family.
Everyone–please don’t read any judgement here of women who truly feel they can’t do it. I’d just like to see better information for people to make that kind of decision.
stateworker- well, abortion it is then.
I am pregnant and we just found out that our daughter is going to be born with Down’s Syndrome. While I am sad that life may be more difficult for her, there is not one ounce of me that feels like she is any less deserving of being born. I am so happy to read your post (especially after listening to my doctor try to convince us to terminate her… we will be switching doctor’s immediately). She is our baby, with our without Down’s
erni-nothing good.
My mother has a friend who had a child with downs syndrome, and I have to be honest, I couldn’t do it. What happens to a child born with downs who is given up to the state after birth?
My daughter’s public school also houses a class for disabled preschoolers, many of whom have Down’s syndrome. I know these kids are probably considered fairly high-functioning and there is a wide range of abilities for people with this condition, but anyone wondering about “keeping” a baby with Down’s should see kids like this and see what the possibilities may be. In addition to attending school and making friends, they are some of the most adorable, kind children I’ve ever seen. I’m sure they have their challenges, but it seems that they bring a lot of joy to people around them too.
I also appreciate your posts, and this one is no exception.
Thank you, thank you, thank you for your posts. It’s nice to finally have somebody writing cultural critiques of issues around disability on this blog–instead of smart things only being said on specialized disability blogs. Hurrah!