I’m a sucker for a Billy Joel song reference. I love you just the way you are is an article from the University of British Columbia by Brian Lin about a research project led by Catriona Hippman, Angela Inglis and Jehannine Austin from the Faculty of Medicine’s Department of Psychiatry. Their research asks parents of Down syndrome how they feel about curing Down syndrome.
I wrote about how I feel about ‘the cure’ in I am what I am. The researchers have been working with families who have children with Down syndrome for the past three years to gather insights into their lives.
Here’s a great quote from the article:
“One of the reasons we haven’t done this sooner is because in medicine we tend to hold a medical view of disability, which assumes that [conditions like] Down syndrome must be associated with suffering – not just for the individuals with the condition, but also for their family members,” says Austin. “Research has shown that this is not necessarily the case at all, and our findings support that.”
What impresses me about this work is that they are questioning the traditional medical model. In my experience, this model dictates: disability is ‘abnormal’ and it must be eradicated or fixed. But what is it really like to have a child with Down syndrome? Forget the outdated stereotypes and myths that many clinicians carry around. The researchers have it right: ask us, the families, and we will tell you the truth by sharing our stories.
My assertion has always been that Aaron brings with him joys and challenges, just like my other two children do. It is the systems that we struggle with – the health system that won’t fund our children’s therapies; the school systems that treat our children as behaviour problems; the social services system that makes us beg for respite services. We struggle with society, which strives for perfection, moves too fast, does not value all human beings and excludes people with differences.
But Aaron himself? I think he’s pretty awesome. He’s not an angel and he’s not happy all the time. He’s an 11 year old boy who has an extra chromosome in his genetic make-up. He’s a human being.
Kudos to the UBC researchers who are not accepting old assumptions from the medical community, and who are going right to the source – families and people with Down syndrome. Let’s strive to replace those old tired stereotypes with reality.