Science Plus Bigotry Plays On Parents’ Fears Over Disability
Science Plus Bigotry Plays On Parents’ Fears Over Disability
Here we have a two-for-one deal in morality and science today. On one hand, you have a company that just got a patent for genetic testing for autism. On the other hand, you have a father/writer who has a disabled child, but says killing him in the womb is a-okay. Anyone else’s head hurt yet?
LabCorp, which bills itself on its website as “The World’s Leading Health Care Diagnostics Company,” and is headquartered in Burlington, NC, has just been granted a patent on a specific type of genetic testing they have developed, which claims to be able to identify certain genes – in either child or fetus, they claim – that could responsible for the development of autism spectrum disorder.
The method, invented by David Michael Margulies and Mark Firman Bear of Massachusetts, involves taking a tissue or body sample from a subject and then conducting a test to identify variant sequences in the subject’s genetic code, which may signify “the presence or an increased risk of developing autism spectrum disorders.” Testing can be done on children and fetuses, according to the patent.
The method is stated to aid in the diagnosis of five autism spectrum disorders, all of which fall under the umbrella of pervasive developmental disorders: autistic disorder, Asperger’s disorder, childhood disintegrative disorder, Rett’s disorder, and nonspecific pervasive developmental disorders.
The method claims to have multiple applications, each of which provides insight into the biological basis of autism spectrum disorders through different lenses.
Can we all be honest, and acknowledge that when they say “fetal genetic testing,” we all know what the likely outcome will be the second a nervous parent is given the results of a genetic test that says “your child has an increased risk of developing autism”? Are we looking to “eliminate” autism the same way that Iceland has “eliminated” Down Syndrome?
And speaking of Down Syndrome, there is a horrendous opinion piece in The Nation by David M. Perry, father of a child with Down Syndrome, who offers up the worst moral justification for killing children like his, while still claiming that his son has “intrinsic value”:
In response to these threats to reproductive freedom, I’ve had to start saying something new and difficult: If individuals want to terminate an otherwise wanted pregnancy due to a prenatal diagnosis, I support their decision.
I’ve spent many years now asserting the need to reorder how we ascribe value to diverse human lives. My son might not participate in the capitalist economy, live independently, or speak (he might also do all of these things!), but his value as a human is intrinsic. I’d like others to see it that way too. Selective abortion, as I’ve written for The Nation, reveals our attitudes about disability and other forms of difference. Still, it’s time to affirmatively support the right (emphasis in the original) to eugenic abortion, even as we fight the need for it. The struggle for disability rights begins with the affirmation that no one gets to tell anyone else what to do with their body. That includes abortion.
The “threats to reproductive freedom” that Perry is referring to are eeeeeeeevil Republicans who champion disabled people, and Ohio’s new law banning selective abortion for Down Syndrome.
I’m still trying to untie the moral pretzel that he’s trying to pass off as a pro-eugenics argument as anything other than the Lena Dunham argument of “believe all women, but not the one accusing my friend.” Is his argument really going to be “abortion as a means of reducing the Down Syndrome population is a good thing, but not my son because he’s mine and I’m totally woke and stuff”?
Our sense of right and wrong is so warped in this world right now, that if the next school shooting took place in a classroom full of children with disabilities, there would be people who would immediately go to Twitter for the “hot take” that hey, they were “only disabled kids, what kind of quality of life do they really have anyway?” Somehow, this bigotry against the disabled is allowed to flourish, because “all animals are equal, but some animals are more equal than others.”
So, let’s apply this to real life, shall we? First of all, I have two sons on the autism spectrum. I will not sugar-coat it: this is not the direction I thought my career as a mother would go, and there are days when it’s really, really difficult. There are also days when it’s really, really rewarding. And I also really, really know my life would be lacking without these two boys (and my oldest daughter and ADHD son; I told you I lead an interesting life).
But no parent gets a diagnosis like autism and gets excited about it. Popular culture either says you get a genius-level savant ala “Rain Man,” or you get a non-verbal, potentially aggressive, completely unattached and emotionally “blank” child. When you tell a person you’ve just met that your child is on the autism spectrum, you usually hear one of two things: “I’m sorry” (why are you apologizing? Did you do something to cause this that I don’t know about?) or “Have you read Temple Grandin‘s book/seen the movie/heard her speak?” (Temple Grandin has a wonderful life story, thanks. I’m still trying to potty train an almost-five-year-old here. Does Temple Grandin do potty training consults?)
My older son (now 12) was diagnosed with autism, complete with severe speech delay, shortly before his 5th birthday. Thanks to his diagnosis, we have taken part in multiple research studies on autism, one in particular that looked at brain development (via MRI) in younger siblings. As a result of that study, our youngest (now almost five) was flagged at 12 months old for signs of autism – a diagnosis that was confirmed at age two.
If it had been offered, would I have done genetic testing? Well, we actually did. In the summer of 2012, we paid through the nose (literally, because insurance did not cover this) to have our older son genetically tested for Fragile X (a known genetic cause of autism-like symptoms) and a SNP array test. While we were waiting for the results of those tests, I took a pregnancy test. We had been discussing having another child. To our surprise, I was already pregnant. And we didn’t have the test results back yet.
The Journal of American Physicians & Surgeons recently published a study on post-abortion experiences.
58.3% of women said they aborted to make others happy
28.4% aborted out of fear of losing their partner
*Lesson learnt: Abortion does NOT empower women, it disempowers us. pic.twitter.com/xFHBTA8MNL
— Obianuju Ekeocha (@obianuju) January 7, 2018
Even if a mother wants to keep her child, even in the face of a life-changing disability diagnosis, how many times do you think they are pressured to abort to keep a partner, or to shut their family up, or because they are told it is the only option and they will never have a fulfilling life with a disabled child?
In our case, the genetic testing came back negative. My son does not have Fragile X (which means I am not a carrier). Nothing abnormal was found on the SNP array (I often wonder how many advancements have been made on that test in the five and a half years since he took it). I gave birth to a beautiful baby boy with the most amazing eyes in March 2013. He has autism. He struggles with speech. He can’t tell you his name or his age. He screams when he can’t make himself be understood. He has no sense of safety and must be watched at all times. He loves to be cuddled. He begs for tickles. He is a chocoholic. He gives kisses to those he loves. He sings Christmas carols quite loudly and mostly on-key, even if he can’t pronounce all the words. Whenever he sees a lit candle, he sings “Happy Birthday” because isn’t that WHY we light candles?
Yes, life with him (and his older brother, who after 7+ years of therapy, talks a blue streak, but is currently undergoing puberty, which is a whole different post) is a challenge. Life with ANY kid is a challenge. Some just get more challenges than others. I have no idea where anyone got the idea that parenthood was supposed to be easy.
Do I wish my life/experiences on anyone else? No, and that is why I am so involved in autism research, and offer up my sons in training sessions for school teachers and therapists to practice therapy skills on in seminar sessions (run by the autism center where my sons are clients). I want other ASD parents to have an easier time than I had. But as each person is an individual, each experience will be different – the way that David M. Perry’s Down Syndrome child is different from any other Down Syndrome child. Who is he to say that HIS son has “intrinsic value,” and yet pass judgment that another individual with Down Syndrome doesn’t? Who gave him that moral authority? Intrinsic value doesn’t exist because we decide who is more equal. It exists because LIFE ITSELF has intrinsic value. Just ask anyone who has had to bury a loved one recently. There is NOTHING more valuable than life.
Science should be used as a tool, not a blunt instrument to bludgeon and shame parents into killing what popular culture deems “imperfect.” Life is not perfect, or fair, or easy. And yet it is the one thing that we all yearn for. We ALL want to live. Don’t let anything – not this genetic test, not the twisted moral preening of one writer, not the bigotry of Iceland – convince you otherwise.