After Finn was born and we were told that he has Down syndrome and the initial shock wore off, I had what I think is a pretty common response, and that was, “Well, he may have Down syndrome, but he’s going to blow Down syndrome right out of the water.” MY kid is going to be different. MY kid is going to be the Superstar of Down syndrome. MY kid is going to make history with his achievements. There was a period of time when I hoped and wondered if it might be possible for Finn to have Down syndrome on paper only, but not practically speaking. I even spent some time seeking a modified diagnosis of mosaic Down syndrome, thinking that would be better than just straight-up Down syndrome. In some way, I supposed I thought that if we could change the name of what he had, it would make all the difference in who he was and how his life would turn out. Back then, I was still very much stuck on what I believed a fulfilling life consisted of, and it wasn’t disability.
That was a long time ago. Seems like a different lifetime almost. Coming to terms with it all can be so hard, so heartbreaking, that many of us search for solace in allowing ourselves to believe that if only they were normal, everything will be okay.
I think it doesn’t help that one of the first things most of us begin hearing when our babies are fresh out of the womb and their blood samples fresh out from under a geneticist’s microscope is the catchphrase “full potential.” That term becomes ubiquitous, following our kids for years and years. We are always trying to ensure that they reach their full potential; they are always working to reach their full potential. To that end, nearly every interaction with our child becomes therapeutic and/or educational. Many of us fill up our schedules with various therapies for our children, and even between therapy appointments, we try to make sure that every toy they come into contact with, every minute they spend in front of the television has some sort of therapeutic or educational value.
What does full potential actually mean, though? Have you ever stopped and wondered? Does anyone – Down syndrome or not – ever really reach their “full potential”? How can potential even be measured? To say “reach” implies that at some point, there is an arrival, a destination. Why is there so much focus on “full potential” for kids with Down syndrome, but not typical kids? Why is there so much focus on achievement and intelligence among parents of kids with Down syndrome?
“Look what he can do! He’s just like other kids! He’s so smart!” Seen and heard all the time.
Why is it so important to us that our kids be smart? Why can’t we truly accept intellectual disability and instead try to outsmart it? None of us would cop to believing that intelligence = value, but our actions, words, even our advocacy sure seem to belie that. “More alike than different.” What’s wrong with being different?
I’m going to go out on a limb and suggest that it stems from that old fear that was planted with receiving the diagnosis. That fear of difference, that fear that we’re not cut out to be a parent to a kid with a disability. I think that while that common initial determination to raise a Down Syndrome Superstar usually fades, it often never completely leaves us, and we end up feeding it with all kinds of therapeutic and educational endeavors in an attempt to normalize our kids. What is therapy, anyway, except a measure taken to treat the condition of Down syndrome, to minimize the manifestations of it? It is no doubt undertaken with love and hope, but when you get right down to it, it’s very much an effort to make our kids fit an arbitrary standard. And it falls short of true acceptance – acceptance of difference, of limitations – and the ability to recognize that disability and limitations do not diminish a person’s value.
I am, of course, very proud of every milestone that Finn reaches, every achievement he makes – as I am with all of my kids. And it’s hard not to brag, because we want the world to celebrate with us. It’s a slippery slope, though, and I’ve learned – mostly through having Finn – that focusing too much on achievement is very much about vanity; that deeds and character and personal fulfillment run a lot deeper than achievement; and that achievement and intelligence have little to do with happiness and success, anyway. If we place too much value on achievement, it tends to devalue some of the very people we claim to be advocating for: those who cannot achieve as much. And it flies in the face of these values we claim to embrace thanks to having a child with Down syndrome: tolerance, acceptance of differences, embracement of diversity, even compassion. What good are those values if, really, what we want is for our kid to be as normal and high-achieving as possible?
Ableism is defined as “discrimination or prejudice against people with disabilities,” or “discrimination in favor of the able-bodied.” We, as parents of children with Down syndrome, would be hard-pressed to apply that term to ourselves. But if what we’re doing is trying to make our kids as normal as possible, then isn’t ableism exactly what we’re engaging in? (I’m going to get hate mail for this, aren’t I?)
Within the deaf community, there rages an ongoing debate about cochlear implants – a surgically implanted electronic device that can give a deaf or hard of hearing person a sense of hearing. On one side of the debate are those who feel that deafness is not a defect, but just a way of being, and that deaf people do not need to be fixed. On the other side of the debate are those who do believe that deafness is a defect, and if current technology and wisdom can help deaf people fit in, then those measures should be undertaken. There is a similar debate in the dwarf community over limb-lengthening surgery, which involves breaking the bones in the limbs repeatedly over the course of several years and surgically forcing the genetically shortened limbs to grow to “normal” lengths – all in the name of helping those with dwarfism fit into normal society. It seems drastic – sadistic, even – but the parents who put their children through limb-lengthening surgeries (it must be undertaken during childhood) do it out of love and hope and all the best intentions. Detractors of these normalizing measures would probably not hesitate to call it ableism – a prejudice in favor of “normal” or non-disabled.
I wonder why the same debate doesn’t seem to occur in the Down syndrome parenting community with regard to all the measures we undertake to improve, treat, and normalize our kids – beyond ensuring their good health. How much of those therapies are really more for us than for them? How much do those achievements secretly relieve us and encourage us to believe that we dodged a bullet, and that through hard work and determination we got a high-functioning kid, and that’s better than a lower-functioning kid? And what does it all prove, anyway – that we outsmarted Down syndrome? That our kid got a better form of Down syndrome? That our kid is going to be happy and successful?
I think this is a discussion that is long overdue. Please join in the conversation – write about it and link up here (don’t forget to link back). If you don’t have a blog, join the conversation by leaving a comment.