The Problem With Down Syndrome: Part 1Posted: July 31, 2013 Filed under: advocacy, Down syndrome | Tags: Chromosome, disability, Down syndrome, Genetic disorder, genetics, Research 10 Comments
Is there a problem with Down syndrome? Is having 46 chromosomes fundamentally better than having 47? If one can designate a certain genetic condition as less than ideal, what are ideal genetics? More importantly, where does this contemplation lead us?
Researchers have discovered a new way to turn off the chromosome that causes Down syndrome, and I am troubled, let me tell you. It feels like the beginning of a brave new world, and my child may be the canary in the coal mine.
First: I support research. I support treatments for better health. I support using medicine to enable happier, healthier lives. There is a lot of mystery still surrounding how people’s genes function with and without that third chromosome, and I think it is worthwhile learning more.
However, the idea of “treating” genetic difference has me wondering what the problem is with genetic difference at all. After all, there is a problem with Down syndrome, correct? It is irrefutable that it is less than ideal to have 47 chromosomes, isn’t it? 46 chromosomes are the way we are supposed to be, right? If I am an amazing human being who can parent such a child, I am doing so despite the problems, no?
No. I’m quite sure that the problem with Down syndrome is that the world insists there is a problem at all.
I’m troubled by a myopic discussion of what the research could mean for people with Down syndrome (this is an indictment of the discussion, not the individual), while outside our community, the assumption that Down syndrome is a fundamentally inferior existence largely goes unchallenged.
It seems to go without saying that having 47 chromosomes is inferior to having 46. Words such as “abnormal”, “malfunction”, and “cure” in well-respected publications clearly paint Down syndrome as an unfortunate condition that could ideally be prevented. Look further into the comments of these publications. I find well-meaning people assuming that people live good lives despite having such an inferior condition such as Down syndrome. Positive anecdotes are proffered up as inspiration and awe of those accepting people with Down syndrome, but the “problem with Down syndrome” stays put.
What is the supposed problem with Down syndrome, then, that I want to refute?
Well, I can’t post an entire novel here, but I’m thinking about genetics and risk first. I’m thinking that attributing so much negative risk to that one chromosome is not correct. Then I’m thinking that I question why people think that intellectual disability is such a problem. Then I’m thinking that this entire “problem with Down syndrome” question, is really “the problem with difference.” I know I’m late to the convo, but I’ve been percolating. I’m a percolator.
To be continued…
You just said exactly what I have been thinking! Thank you for your post!
Thank you, too!
Keep percolating……..you’re definitely onto something here. I have yet to write about it all because I still can’t find the right words for how I feel. I’ll take my cues from you!
Oh, no, no cue taking! **stage fright**
I had a conversation with a co-worker recently who has a daughter with spina bifida. We were just talking about how our kids were doing and he in particular was talking about how well she is doing despite all the negtativity when they found out she had it prenatally–they she woud never live a full life–yada yada yada. I was telling him about how people with Down syndrome are also living great lives and it’s not so doom and gloom and he asked “so what’s so bad about Down syndrome then?” and I just said–I don’t know. i think you hit the nail on the head–it’s all about how the majority of people percieve disability–ESPECIALLY intellectual disability. Anyway–i haven’t written about this new research either because I honestly haven’t had a whole lot of time to really think about it. Keep percolating!
Percolating is hard! Writing about the stigma about intellectual disability has been hard for me. So hard to put into words!
I really loved the story you shared. <3
Yep, you’re onto something. Looking forward to Part II . . .
Ok, well clearly I’m behind on my own blog, because I just wrote Part 2. :p
Richard is soon going to write about this too because I’m not great with words. Looking forward to part 2!
I can’t wait to read what he has to say!