The science of respect: a sibling's perspective

Amanda Modery
UCD School of Medicine and Medical Science, University College Dublin, Belfield, Dublin 4, Ireland


Ever since my high school biology class I’ve known that going into science was going to be a hard road. It was the first time I was taught that someone with an extra 21st chromosome “suffers” from Down syndrome. And it was not the last.

Yes, my older brother has Down syndrome, but does he “suffer” from it?

I remember sitting in that class and being shocked. I wondered: does my brother “suffer” from Down syndrome? Yes, my older brother has Down syndrome, but does he “suffer” from it? The teenager at home who loves to sing and dance, play Nintendo, and go hiking and camping? The sports fanatic who keeps up- to-date on all his favorite teams – the Mariners and Seahawks – and enjoys competing in Special Olympics? Sure, he struggles at some things, but don’t we all? And, sure, his struggles may be with counting out change at the store while I’m struggling with pre-calculus, but does that mean he “suffers”? The image of Down syndrome painted by my biology teacher just didn’t fit with the brother I know and love. I remember wondering what to do.

And that was just the first time. I’ve taken numerous science classes since – both in my first degree and now here in medical school – that have included negative and outdated language and images. And every time I hear it, I feel awkward and alone, wondering if I’m the only one who notices. And every time I wonder what to do. Do I want to be the sibling who objects to every offending word and phrase, and gets labelled as being too “politically correct” when all I really want is language that shows respect for people with disabilities? And what can I do to make people understand that people with disabilities are just like us and that they deserve respect?

Well, what I can do right now is tell you a bit about my brother. His name is Travis and he’s older than me – by three years. We went to the same middle school and high school and all the teachers knew him; he’s the social butterfly of the family and he’ll talk your ear off – the complete opposite of me. He was a Boy Scout and got his Eagle Scout in 2002 – it took him a few years longer than most scouts, but he made it. He’s always enjoyed going hiking and camping with the family and he loves watching movies and playing Nintendo. Since 2005 he’s lived in a group home with four other guys with various disabilities and their care provider. He thoroughly enjoys the independence of living away from home and the camaraderie with his housemates. He also works two part-time jobs – one re-shelving books at the local library and the other bagging groceries at a grocery store. His social calendar is filled with various sporting events, dances at a local community center, dinner at the mall with friends, church on Sundays, and going to the movies. He sounds pretty much like you or me or anyone, doesn’t he?

So this is what I think of when I sit in class and hear “suffers from” or “Down syndrome baby” or other phrases that sound archaic and negative. Is my brother a “Down syndrome” or a person? He’s a person first and foremost in my mind, which is why I always prefer “person with Down syndrome.” And it is not just from the lecturers and doctors that I hear negative language. I can’t count how many times I have sat in class waiting for a lecture to begin and heard the word “retarded” flung about. Anytime I hear it used in a derogatory manner, it feels like a kick in the gut. And I hear it far too often. 

Anytime I hear it used in a derogatory manner, it feels like a kick in the gut. And I hear it far too often.

So here I am, years down the road from that high school biology class and I’m still faced with the same dilemma. What to do? How much to do? Can just one person make an impact? Well, maybe it doesn’t have to be just one person. Maybe you can help me. The next time you talk about someone with a disability take a moment to think. Ask yourself if the language you choose shows respect. Or next time you hear someone say something negative or grating, speak up and help me change the conversation. Do it for me. Or better yet, do it for Travis, for his housemates, and for his friends. Do it for the over 200 million people around the world with intellectual disabilities.