Can Society Move Past Trying To Fix The “Imperfect?” (VIDEO)
Can Society Move Past Trying To Fix The “Imperfect?” (VIDEO)
In every way imaginable, we have lost the ability as a society to tolerate anything deemed “imperfect.” We demand fairness, we demand equal treatment, we insist on good service, and we do not compromise when we feel that we have been wronged. This has spread to parents trying to clear the paths for their kids so everything will be “perfect” for them.
But what happens when life isn’t fair or perfect? What happens when society at large decides that your child is “less than perfect?” Should parents try to “fix” or “cure” their children with disabilities like Down Syndrome or autism?
An article written by Amy Julia Becker for Vox describes her internal debate on research that offers a possible cognitive “fix” to her daughter with Down Syndrome.
Ethicists, theologians, and medical doctors have all answered some version of those questions over the years. Some see Down syndrome as a biological problem, a birth defect in need of fixing. Others see Down syndrome as a naturally occurring condition with its own possibilities and limitations.
These two perspectives may soon have practical implications: New research on the brains of people with Down syndrome is raising the possibility of treatment for some of its cognitive effects. The question becomes: As a parent, should I pursue treatments for my daughter, or do I embrace her just as she is?
This has been a raging debate for years within the Down Syndrome community, and in the autism community. Lines get drawn and tempers get hot as parents swing wildly back and forth between pursuing “cures” or throwing a full-out party for “neurodiversity” and telling society at large that they must accept their child “as is.”
As an autism mom, with two sons on the spectrum, I often see the full range of this debate. Becker discusses the implications of the potential “cure” being discussed – in this case, a potential medication to improve cognitive function for people with Down Syndrome. While she doesn’t come to a concrete conclusion on the medication’s possibilities itself, she does point out two very important facts:
1) The abortion rate for Down Syndrome pregnancies is high (estimates in the United States put the abortion rate at 67%, and it is reportedly higher in Europe), and
2) People with intellectual disabilities are continually shunned by society at large.
Learning how to accommodate people with disabilities, which may well include medication for cognition, is a crucial act in expanding our definition of humanity and of recognizing the common good that comes from policies and practices of love and inclusion rather than conformity and exclusion.
Or, as these people with Down Syndrome put it, they are quite happy with who they are, thank you very much.
The problem is, society doesn’t seem able to accept the “imperfect” any longer. Everything needs a “fix” or a “cure” – even people.
Like Becker, I am often posed with this dilemma. Would I “cure” my sons to make them “neurotypical”? I have no doubt that it would make their lives – and mine, by extension – a lot easier. As my older son rapidly approaches his 11th birthday, I worry about what his adolescence is going to look like. Six years of both ABA therapy and speech therapy has definitely changed his behavior and ability to communicate, but it didn’t “cure” him any more than giving an amputee an artificial limb “cured” them. Therapy has given him an awareness and ability to function and communicate with the people around him, but it has not fundamentally changed him. He still is on the autism spectrum (which is more a circle than it is a line), and he always will be. “Curing” him would mean changing how his brain processes everything. How different would he be if his brain functions were completely changed? How different would anyone be?
I don’t judge an autism parent who does want to change their child. I don’t walk in their shoes or live their life. When a child has much more severe problems than mine do, be it behavioral or medical, I can’t fault them for wanting a solution. What I do judge is society’s attitude toward the imperfect. My sons do not “look” like they have autism at first glance. People with Down Syndrome have more identifiable physical characteristics, which result in snap judgments and all the condescension that was talked about in the video above. One only has to consider the abortion rate of Down Syndrome babies, and the ongoing anti-vaccination argument (vaccines have been completely debunked as a cause of autism), to realize that people are afraid of not having that “perfect” baby. There are people who would rather have a dead child than one with a disability. Society has been so focused on making things “fair” that we have forgotten that life itself is inherently unfair. A hundred years ago, influenza killed without mercy. The flu still kills today – only now, we call it “unfair,” because it is rare, thanks to modern medicine. Back then, it was a statistic.
All human beings want to be loved as we are. No one wants to be “fixed” before they are worthy of love or respect. That includes those with intellectual disabilities. I can’t promise that every person with Down Syndrome or autism spectrum disorder will greet you the way my son would (he likes to shake hands, tell you his name, and ask if you like LEGOs), but I can promise you that you will never regret treating them as a person deserving of dignity.
I live with Epilepsy. Down syndrome, Epilepsy, autism, and more are apart of who we are. Sometimes the word “fix” can be confused with “change”. My parents have seen my epilepsy and would they want to fix it, absolutely. But we can’t, and shouldn’t because each of these titles are simple apart of who we are. The people who look down on us and think of us as aliens are the ones who want us to be perfect in their perfect society. Sorry if I don’t want to change myself to fit your standards.
1. I have autism.
2. Life ain’t fair.