An anonymous blogger shared her story last week about receiving a prenatal diagnosis of Down syndrome and choosing to then have an abortion because of the diagnosis. It’s not surprising – it happens nine out of ten times, after all – but it didn’t make her claims any less disturbing.
I was so late in pregnancy, there seemed not to be time to meet with a genetic counselor so I did my own research on Down syndrome. I concluded it was a grey diagnosis where best case was hard and worst case terrible. I could envision handling the early years, but not the long term. We have family friends with children who have cognitive disabilities, and those families and children have struggled. I have seen the parents “leave it all on the field” to try to position their kids for some form of independence and still fail. Once the kids aged out of school, there were no jobs, no meaningful roles, no chance of family and homes of their own for these young men. The parents have suffered. The kids have suffered too. I didn’t want that future for my son or for my family. We decided to terminate.
… In all, my experience was not only painful; it was educational. Regarding prenatal testing, i certainly learned the “what,” the “why,” and the “so what”. I wish I had had that knowledge before. I met many women who had terminated wanted pregnancies for medical reasons — due to all kinds of conditions, of which Down syndrome is the tip of the iceberg. Bigger picture, I learned that in life, things go wrong, and when it comes to kids, the stakes are through the roof. In fact, strangely, I think I became a better parent. It was revealed to my husband and me that our children are everything to us, and ensuring their welfare our primary purpose in life. We treasure every moment with them. We moved into a better school district. I never forget that what I do is all for them. And I never forget my son who had T21. I loved him just as much as the kids I have living here with me today.
When it comes to continuing or terminating a pregnancy with Down syndrome, I believe there is no right answer. This means there is also no wrong answer. I would never advocate for a family to choose one road or another. It is a personal choice with many complex factors and, ultimately, both choices should be supported more than they are today. Families raising children with DS deserve greater social and practical supports, particularly aimed at adults with DS and their roles in life as adults as well as their medical long-term care. On the flip side, termination of pregnancies should be de-politicized and de-stigmatized. Parents on both “sides of the fence” have more in common than they may think, since in every case we are talking about people loving their children and thinking only of their quality of life in the face of a very difficult diagnosis.
As the mother of a child diagnosed prenatally with Down syndrome, I found myself feeling physically ill on so many different levels from reading this article.
First, it’s profoundly disappointing that this woman would choose to end the life of her child based on her own perceptions of a few disabled people she knows. She states that the people she knows with cognitive disabilities have no chance at independence, no job, and – most insultingly – no meaningful roles.
I wonder if this blogger actually spoke to any of these people before making such a snap judgment. Who is she to decide how meaningful someone’s life is, or whether that person is suffering or not? If she had done even a little bit of research, she could have learned how far people with Down syndrome can go in life now. Contrary to what she seems to believe, people with Down syndrome marry, have families, work, and lead meaningful lives. One young man with Down syndrome even got a college degree and now owns his own restaurant. Unfortunately, this woman’s son was killed based on her own prejudices and stereotypes, formed on outdated, negative, incorrect information. She claims to have been concerned for his quality of life, but she killed him, so now he has no life to live whatsoever.
Why do so many people seem to believe that they can decide whether or not a person with a disability would want to live or not, or whether or not he or she would enjoy life? That’s not something that we get to decide. This blogger acts as if she somehow saved her son from an abysmal life, something that would be worse even than death. But if she had only taken the time to, I don’t know, talk to some people with Down syndrome, she might have realized how unbelievably wrong she was.
Consider, for example, the fact that a whopping 99% of people with Down syndrome report being happy with their lives and who they are. Families of people with Down syndrome are overwhelmingly happier and report a more positive outlook on life. Yet this woman condemned her son to death. She’ll never know the joy and love that little boy would have brought to her life. Given the chance of living with Down syndrome or not living at all, what choice do you think he would have made? This woman acts as if she made some sort of noble choice, though, saving him from a miserable life. Whether she actually believes it or just tells herself that so she can sleep better at night is anyone’s guess.
I also have a very hard time believing this blogger when she claims to love her son with Down syndrome just as much as she loves her other children. If that were truly the case, then she wouldn’t have killed him. If she’s telling the truth, then what would she do if, God forbid, one of her living children were in a car accident and ended up disabled? Kill him because she thinks his quality of life isn’t good enough? It’s the same logic she used for the son she killed, after all. The only difference is that her remaining children have already been born. It would be unacceptable for her to kill her children because they are disabled once they are born, so why is it acceptable to do the exact same thing before they are born? What gives her the right to decide whether her son’s life was worth living or not?
Most disturbing of all, though, is her closing: an abhorrent display of moral relativism where she excuses her decision to kill her son, claiming that there is no right or wrong answer to the question of whether or not to abort a baby after a prenatal diagnosis of Down syndrome. It’s never the right choice if it means denying someone of the chance to live. It’s even more despicable to do so based on a diagnosis of a disability. An extra chromosome does not mean that it’s acceptable to rob a person of his life. This woman’s argument is basically that people with Down syndrome are less valuable than “normal” people; otherwise, it wouldn’t be acceptable to kill them based just on the fact that they have a disability. It’s a sickening, disgusting mindset to have, and one that’s very, very wrong.
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