If I somehow (metaphysics be damned!) had a choice to be born in a body that would slowly disintegrate on me, like that of Stephen Hawking, or not to be born at all, I’d pick the latter.
These words, so cautiously crafted by writer Sierra, include the very word that both builds and destroys her main point: choice. Throughout her post, “Disability, Prenatal Testing and the Case for a Moral, Compassionate Abortion,” Sierra argues continuously that while she supports people with disabilities, she feels that abortion can be and often is the best “choice” when an unborn human is diagnosed with a genetic condition or disability. However, the reasons why she believes this are empty.
According to Sierra, if Hawking were “hanging out in the metaphysical waiting room before descending to earth, and he told me he didn’t want to be born into all that suffering, it would be unfathomably selfish of me to demand that he endure what he has endured just so that I (and other healthful people) could benefit from his mind.”
While this statement seems on the surface to be one of compassion, it fails to make Sierra’s point. In reality, if Hawking had been aborted, it wouldn’t have been his choice; it would have been his mother’s, his father’s, or a doctor’s decision. And none of them would have taken Hawking’s opinion or potential abilities into account. All they would have seen were the unforeseeable struggles and sufferings, as well as their own natural fear of the unknown overshadowing the amazing life that was and is only Hawking’s to live in the first place. The choice to abort the person with a disability never belongs to that person. It is always under the control of someone else.
In addition, Sierra lumps herself in with “other healthful people,” claiming that no one who is healthy has any right to tell a person who has a disability that his or her life is worth living. However, it is the “healthful” people who have a responsibility to help ensure that everyone, especial those unable to speak for themselves, is treated as an equal. And being treated as an equal starts with being allowed to be born in the first place.
Deciding Which Disability is Too Hard to Live With
Sierra focuses a great deal on Down syndrome, which is natural when discussing abortion because statistics show that about 9 out of 10 humans with Down syndrome die through abortion. Yet it turns out that Sierra thinks relatively highly of those with Down syndrome in comparison to what she thinks about those with cystic fibrosis. She writes:
[…] when did we go from talking about the relative independence of some Downs individuals to the horrible suffering inflicted by cystic fibrosis? Would you utter a sentence like this?: I hate the thought that there will be fewer people with cystic fibrosis in the world as a result of advances in prenatal testing. Would you tell parents how ‘rewarding’ it is to raise a child with cystic fibrosis?
Yes and yes. I am the parent of a child with cystic fibrosis. First, I would hate that there be less people with CF as the result of prenatal testing. That would mean we are killing them, not curing them. Second, although I work hard to raise money for a cure, I would not go back and erase CF from my child’s life, because she would not be who she is without it. She would be physically, emotionally, and mentally a completely different person. And the clarity and empathy that have come along with her diagnosis have changed me for the rest of my life, as they have changed her, her sister, her father, and her friends and extended family. Ronnie Sharpe, an adult with CF who runs a blog about his life and CF at RunSickBoyRun.com and is the creator of Cystic Life, an online community for people with CF, agrees. He says:
Sierra talks of cystic fibrosis as if she’s lived it, or frankly, ever been around it in any extent. Before anyone speaks on a disease that I was, yes, blessed with, please do more than just a Google search. I’ve had the pleasure of knowing literally thousands of people with cystic fibrosis. I’ve heard the phrase ‘I wish I had never been born at all’ exactly two times.
Twice. Yet Kaiser Permanente released statistics revealing that 95% of their Northern California patients whose unborn children had received a diagnosis of CF aborted those children. Nine out of 10 children with CF, stripped of any choice as to whether or not they wanted to live.
A friend of mine who lost her daughter to CF sixteen years ago recently told me a heart-touching story. Her daughter had desperately wanted to become a mother and was elated upon discovering that she was pregnant. Her mother asked her, “What if they baby has CF?” Her response was simple: “I don’t care if the baby has CF. What about my life has been so horrible?” Most people, if given the chance, would rather live with suffering than not live at all.
Fellow CF mom Samantha believes that we all may wish for good health but that life sometimes has other plans. She says:
I see and understand that these kids have a hard time and some may wish they were never born, but they were because we as parents love them from the first time we feel them move inside us. So it might be selfish for us to bring a sick child into this world, but oh well. There’s some things DNA tests can’t test for, like if your child is going to grow up to be a killer, a rapist, or a drug dealer.
Comparing Disability to Economic Status
The fact is, Sierra isn’t disabled (or at least doesn’t tell us she is) and never once claims to know anyone who is. She doesn’t do daily life-sustaining treatments, she isn’t discriminated against for the number of chromosomes she has, and she doesn’t have to worry about whether or not the building she’s entering will have doorways wide enough for a wheelchair. The only way she seems to even attempt to relate to people with disabilities is to mention that she was once poor. As a person who has lived his entire life with a chronic health condition, Sharpe says:
Sierra seems to think she’s been somehow enabled to speak for the struggles of someone that she terms ‘disabled’ because of her experience of being poor. I find that incredibly offensive and misguided. I’ve been living 32 years, fully-abled, and have a wife, a daughter, friends, job, house and blessed life to show for it.
Being poor is a struggle, yes. However, it, unlike cystic fibrosis or Down syndrome, is something you can escape. It doesn’t mean daily treatments and frequent trips to the hospital. It is in no way the same as have a genetic condition or a disability of any kind.
Sierra goes on to make additional arguments in favor of aborting children with disabilities, which are discussed in Part 2.