Sierra of No Longer Quivering has a truly excellent post at RH Reality Check the controversy over prenatal testing and abortion. It’s a response to a recent article by Christianity Today’s Sarah Eekhoff Zylstra, who argued that prenatal testing will inevitably lead to a rise in abortions. Zylstra states that “raising a son or daughter with Down’s Syndrome can be a wonderful gift,” and selectively quotes anti-choice leaders. That includes Gary Rudd, president of the Christian Medical and Dental Association, who asks Zylstra: “Who are we to say that cystic fibrosis is such an overwhelmingly terrible disease that they shouldn’t be allowed to live?” This rhetoric is typical of the anti-choice movement. Rick Santorum, formerly in the running to be the Republican presidential nominee, used his campaign as a platform for his unequivocal opposition to prenatal testing.
Sierra does a thorough job of unpacking the problems with Zylstra’s piece and I don’t intend to repeat her work. She correctly identifies it as a fetishization of disability that dehumanizes disabled children. But there is a perspective missing from this debate, and it is a perspective not represented in Zylstra’s piece, or in the rhetoric produced by her movement. That perspective belongs to individuals diagnosed with a genetically based disease.
I am one of those individuals. A month before I turned 22, I received a diagnosis of hereditary spherocytosis (HS), sometimes called Minkowski-Chauffard disease. It’s a rare illness: I have only ever met one other individual with the illness, and he happens to be my brother. For me, HS means chronic pain from an enlarged spleen and occasionally, liver inflammation caused by my spleen’s dysfunction. HS can make me very tired, and it leaves me susceptible to certain common infections. For you, influenza is an inconvenience. For me, influenza means at least a month of illness, and possible serious side effects.
My diagnosis occurred during a four month period of constant illness due to walking pneumonia, which did not respond to antibiotics and eventually led to a severe lower respiratory infection. Sometimes my skin turns yellow. My brother is yellow most of the time, and fends off questions and comments from strangers and classmates about his condition. He’s already had surgery to remove a gallbladder destroyed by the illness, and at the moment, I’m awaiting a doctor’s decision about the removal of my spleen. It’s a serious decision because the removal of my spleen means that although my HS symptoms will disappear, my immune system will be permanently damaged. I’ve required extensions on nearly all of my assignments in graduate school because I’m often simply too tired and too much in pain to function properly.
That’s my life with a genetic illness. I don’t believe this illness makes me less of a human. It certainly doesn’t deprive me of a right to live. Nor do I regret my birth. Despite HS, I’ve been able to accomplish most of my current goals. I also don’t see the point in stating my desire for a life free of HS; it should be obvious that any ill person would rather not be ill. And that is exactly why, if I had the choice, I would choose not to pass on my illness. My version of HS is autosomal dominant, which means there’s a 50% chance I’ll pass it to my biological children. This is not an abstract intellectual debate for me. It is my life. And so I resent it when individuals like Gary Rudd, Rick Santorum, or any of the other individuals quoted in Zylstra’s piece, decide they have a right to comment on the implications of prenatal testing. An able-bodied person cannot possibly comprehend the reality of a disabled life. You can only ever perceive it as an outsider, and so to comment on it dehumanizes those who live that reality.
This piece by Emily Rapp, a disabled woman with a profoundly disabled son, is probably the best piece I’ve read on the subject. It’s raw and desperate and honest. It reflects anything but a disregard for life; rather the opposite. It’s a paean to life and its horrors and its beauty. And anti-choicers vilified her for writing it. The comments section on her original piece is a narrow glimpse into the extent of that vilification. And my own experience with the anti-choice movement is similar. When I dared suggest that someone without a genetic illness really didn’t have the right to make decisions on behalf of those of us who do, I was told to go kill myself because I clearly didn’t appreciate my mother’s gift of life.
Irony aside, it’s clear that it’s time for a different debate on the subject of abortion and disability. I can appreciate my life while also believing that it would be irresponsible of me to knowingly subject a child to suffering. And that’s in regards to an illness that doesn’t cause the same level of suffering as cystic fibrosis or Tay Sachs. Gary Rudd, Sarah Zylstra and their anti-choice peers are not in a position to decide that disability is a gift. Nor should parents of disabled children fetishize their children’s illnesses. It may be a gift to you but is most certainly not a gift to your child. It is a challenge, and it is painful, physically and emotionally, and that reality shouldn’t be diminished. By all means, exercise your choice. But you are not superior to parents who decide to spare their children suffering. And you will never, ever be as qualified to speak on this subject as a disabled person, so don’t pretend to us that you’re an expert on disabled lives, that your opinion on prenatal testing is more valid than ours, or that it ought to influence public policy when it is completely uninformed by lived experience.