reflections related to disability advocacy, family and (needed) cultural change
Saturday, January 26, 2008
Back 7 or 8 years ago I was asked to speak to the staff at a local school about Down syndrome. I started with a true/false quiz and then spent time dispelling common myths, misinformation and replacing their pre-conceived notions with accurate information. I talked about chromosomes and challenges, potential and possibilities and then I opened the floor up for questions.
I answered a couple innocuous questions and then called on a woman in the front row whose hand was up. She looked at me and said, “So, what do I do when a downy…..”
To be honest, I have no idea what the rest of the question was. My ears started to burn and I got completely flustered. A DOWNY???????? Isn’t that a FABRIC SOFTENER????? I nearly died. I could feel my face burn—my ears stayed red for hours.
I don’t know what I actually said to her—I didn’t yell or ridicule her so I think I get extra credit!
From that day to this I begin most presentations by introducing and explaining the use of person-first language. The best defense is a good offense!
Person-first language is the practice of saying “a person with a disability” or “a child who has Down syndrome” rather than saying “the disabled” or “ a Downs child.” It is one more tool in the arsenal against prejudice.
It is extraordinary, but many people do feel that because they know a diagnosis they know the personality, characteristics and even the future of a person who has a disability. I can’t tell you the number of people who told me, before my daughter was even a year old, how placid (or stubborn) she would be, about weight problems and learning issues and what kinds of life she would have—she was a BABY, for Pete’s sake!
By making things a bit more cumbersome person-first language interrupts the flow of our common thinking and helps us focus differently. Keeping the human being in the priority position in our thoughts and in our sentences makes it more difficult to make a disability the center of our relationships. As the case of Katie McCarron illustrates focusing on a diagnosis and losing sight of the human being who has it can be carried to dangerous extremes.
Author and speaker (and fellow Partners in Policymaking graduate), Kathie Snow, has written and spoken extensively on the value of person-first language. She has created a handy reference sheet and she uses a quote from Mark Twain that I just love:
“The difference between the right word and the almost right word is the difference between lightning and the lightning bug.”
Or, as the Bee Gees used to sing, “It’s only words, but words are all I have to take your heart away.”
I am the mother of three, wife of one. I am a Partners in Policymaking graduate and a committed disability advocate. I want to catch up on my scrapbooking, learn more about art-journaling, get my house in order, read all the books I have set aside to read and change the world--not necessarily in that order. The opinions in this blog are my own and not those of any of employers.