The Problem With Down Syndrome: Part 3Posted: August 5, 2013
Part 2 of my ramblings are here.
What is the problem with intellectual disability?
Can’t get a job. Can’t read. Can’t talk. Can’t understand.
The notion that intellectual disability (ID) is negative seems a matter of common sense to quite a few people. It is one of the often cited reasons in commentary and articles that advocate for research with an eye towards “curing” Down syndrome. Neither side seems to refute the idea that ID is intrinsically bad. It seems to be a given.
I’ve mulled over why this is such a given, and figure it’s worthwhile to look at the definition of intellectual disability.
According to The Arc, intellectual disability is defined by a “below-average cognitive ability with three (3) characteristics:
- Intelligent quotient (or I.Q.) is between 70-75 or below
- Significant limitations in adaptive behaviors (the ability to adapt and carry on everyday life activities such as self-care, socializing, communicating, etc.)
- The onset of the disability occurs before age 18.”
I read this and fully understand that ID is real. There are people (including my son as he grows up) who meet these criteria, and may have lives that look different than that of a person without ID.
What I’d argue instead is that intellectual disability is socially defined and there’s nothing inherently wrong with or bad about falling into this category. (Read: Only bad if we say it is bad.) In fact, I’d argue that intellectual disability doesn’t mean a categorical lack of intelligence.
I’m a big fan of Howard Gardner’s theory of multiple intelligence because it pushes the bounds of how we view intellect. The quick explanation… He saw seven types of intelligence:
The longer explanation… read here. (It is a good read, check it out.) You see, our traditional definition of intelligence is quite narrow. IQ tests measure math and language abilities, maybe spatial. What would happen if we looked for, valued, and nurtured other kinds of intelligence?
Then we get to the issue of having “significant limitations in adaptive behaviors”. Some are entirely socially dependent. Our reliance on spoken word limits a person who doesn’t speak. Our monetary economy limits a person who can’t use an ATM. I’m even going to say that some really basic self-care criteria are socially dependent. Say a person cannot manage to shower once a day, shave, or use deodorant. For most Americans, this would be a problem, and that person would be labeled as having difficulties with self-care. Well, news flash. Removing body hair, daily bathing, and deodorant are not absolute necessities to self-care. Disposable razors, indoor plumbing, and mass-produced hygiene products have all influenced what our idea of “normal” self-care is. Some of this stuff only matters because we say it matters.
Could there be some aspects of having intellectual disability that are bad? Sure, there could be. That would likely be for the person with the ID to decide, and would be perception based. That is more about the experience of having it, rather than the ID itself.
So if we value human life, then can’t we expand our ideas of what is normal and good? Why are people so quick to think that the only way to is to “cure” Down syndrome? Can’t we find more ways to communicate other than spoken word, expand our definitions of economic value, and just care a bit less about outward appearance?
Is the problem that people with intellectual disabilities are (wrongly) considered a drain on society? Well, we are all drains on society. The give and take is the glorious interdependence of the human species, and we are collectively stronger for it. No one questions people with medical needs as deserving of medical assistance. No one questions people with emotional needs deserving help and support. Why do we question a person needing assistance due to an intellectual disability? It should be a given that we support our fellow human beings, because we all need support, period.
Right now, the research is about understanding the effect of having a third copy of the 21st chromosome by being able to silence it, in a petri dish. It is far from a “cure”, yet some quickly rejoice at being that one step closer.
Maybe in the future, a person will be able to choose gene therapy to change the function of her brain, just like we can now choose to change our bodies through surgery. My guess is that it won’t be complication free, just like surgery is not complication free. Maybe if it means avoiding a neurodegenerative disease, it’ll be worth it.
Heck, maybe in my child’s lifetime there will actually be a way to “cure” Down syndrome, but there isn’t now.
In the meantime, I’m afraid. I’m afraid that the assertions that there is an inherent problem with Down syndrome are growing and multiplying. I’m afraid that all this talk of “curing” Down syndrome will actually sway the course of scientific research away from finding treatments for real medical conditions.
Most of all, I’m afraid that despite the hope I have today for a more inclusive society, my child will be ground down by a world that dreams of curing his very genetic existence. I’m afraid that despite all my efforts, one day my child will look in the mirror and believe there is something fundamentally wrong with the person looking back at him.
The thing is, he seems just right to me.
Next up: Fear of Difference …and then I promise to shut up about this topic.