My name is Kathy
By Kathy Bates
Published: Wednesday, November 12, 2008
The role of labels
Labels can serve a necessary purpose. Without labels, individuals who have disabilities would not be able to receive the equipment and services they need. If I did not have the label of cerebral palsy, I would not receive the homecare services I do, nor would I have my power wheelchair. My insurances simply would not pay for them. Disability is big business, but it never defines a person.
At the age of 5, I could explain cerebral palsy to anyone. My friends would ask me why I was never in school on Tuesday and Friday afternoons. I would tell them, “I have to go to therapy.” Someone would always ask, “Will they make you better?” I would respond, “I’m not sick, but I guess so.”
Today, I am older and wiser. I know that what you see is what you get; I don’t need to be fixed. Now I often receive labels such as “courageous” and “inspirational.” But I am just a woman trying to live a full and happy life, as independently as possible.
A conversation with Lauren
I was a special education paraprofessional at a local elementary school, but I was on summer break and needed a part-time job. I had an interview at a day-care center near my apartment. As part of my interview I volunteered for a day to demonstrate how well I worked with the children.
I met a 6-year-old named Lauren on the playground. She rode up to me on a tricycle and said, “Hey Wheelchair, move!”
“Oh, hello Lauren. My name is Kathy, remember? Did you forget my name? I’ll be glad to move when you ask me politely.”
“No I did not forget your name, and I said move!”
“No, not until you ask me politely.”
We went back and forth three more times when finally I said, “Hey Tricycle, I’m not moving.”
Lauren said I was mean and rode off crying. (Yes, I know two wrongs don’t make a right and I made a 6-year-old cry).
Finally Lauren came back and said, “Excuse me, Kathy, would you please move?”
Feeling victorious, I said, “I would be happy to.”
People First Language
We are all human beings and we all deserve respect. People First Language puts the emphasis on the person first. When it is necessary to speak of a person’s disability, the disability is always secondary, i.e. “person who has a disability” vs. “disabled person.” People First Language eliminates the use of antiquated negative terms, such as “birth defect” and “handicapped,” in favor of such terms as “congenital disability” or “person born with a disability.”
People First Language is not about political correctness—it is about positive attitude. The way people who experience disabilities refer to themselves, as well as the way they may allow others to define them, can be a major barrier to full participation and citizenship in our communities. A common mistake I often make is asking where the handicapped- accessible bathroom is instead of for the accessible bathroom.
The more we use People First Language, the more disability will be seen as a form of diversification rather than a defect. For instance, you would never introduce a friend who is African-American as your “black friend” or even as your “African-American friend.” The important part isn’t his ethnicity, but that he is your friend, and he has a name. The same is true for persons with disabilities.
The “R” word
Let’s talk about the “R” word - retarded. Many people who experience an intellectual disability live very full and active lives complete with jobs and meaningful relationships. But the “R” word remains a common insult, most often heard on playgrounds by kids and teenagers. I even recently overheard a mother use this word as she yelled at her children in a department store, saying, “You kids stop acting like retards.” Situations like this can be very difficult to witness, as it’s hard to stop and educate someone who’s already angry. The important thing to remember is that, as human beings, we will all continue to grow and develop despite what disabilities we may have.
Even the state government is getting into the act. As of July 11, 2008, the Governor signed a law stating that the “R” word must now be replaced with the term “intellectual disability” in official state documents. This victory was the result of all the work done by the self-advocacy group People First of New Hampshire.
Apply People First Language
Just as young Lauren at the day-care center didn’t readily understand that despite our differences we are all people first, society rarely realizes the importance of People First Language the first time around. It takes patience and sometimes not-so-gentle reminders for people to truly understand the power of their own words.
<i>Kathy's background is in elementary education with an emphasis on special education. She has worked with both adults and children with disabilities. Kathy was a member of the NH Developmental Disabilities Council for nine years serving as chairperson for five of those years. She has been a group leader at the Family Leadership Series presented by the UNH Institute on Disability for seven years and has worked for People First of NH as a group leader.</i>