PERSPECTIVE: How I Grew To Be a Powerful Self-Advocate
By Allison Cameron Gray, Special X researcher and disability activist
I am a college graduate with cerebral palsy. The ADA was passed when I was 2 years old, in large part due to the pioneering activism of Judith (Judy) Heumann. I was delighted to learn that Special X was hosting a Live Chat with Judy during my first week working with the organization. I want to share a little about what the ADA and Judy’s work has meant to me, what I’ve learned about standing up for myself, and what I took away from the conversation with Judy about how parents can raise their children to be self-advocates.
My mother was a Licensed Clinical Social Worker and was familiar with the disability community, so this background gave her a head start as my first advocate. “What does the law say?” is a common question in our house. I was speaking at public hearings by age 10 and running my own IEPs in high school. Suffice it to say, my parents raised me to be a strong self-advocate.
Judy and I were both fortunate to have supportive parents who enabled us to find our voices. During our live conversation with her on June 19, Judy told us that her parents lived in a two-story house with no bedrooms or bathrooms on the first floor, so her parents had to carry her up and down the stairs. When she was five, they built a bedroom, bathroom, and ramp on the ground floor. However, the room was so cramped that Judy was unable to reach her closet using her wheelchair, so her mother picked out her outfits. “Camp was the first time, when I was 9 years old, that I was able to make decisions about what I wanted to wear,” she told us.
Allowing your child to make their own choices and teaching them to become their own best advocate is easier than it seems. When a child observes their parent speaking up for them, they are more inclined to self-advocate as they age. Consider including assertiveness as an IEP vocational goal. When they’re old enough, have your child attend their IEP, even if only for five minutes. Presume competence — anything less is disrespectful and detrimental.
Judy also encouraged us to be thoughtful about the words we use. “It’s very important to know that the way you treat your children is the way others will treat your children,” she said. Everyone — doctors, therapists, friends, babysitters — should speak respectfully to your child; when they don’t, say something to correct the behavior or find someone else. Espouse person-first language with everyone. Your child’s disability is not their only feature — help others to see the whole person that you love. “Let your kids know that you believe in them, and that they can make meaningful contributions,” Judy reminded us.
Self-advocacy is a necessary life skill. “Whether you’re a parent or a disabled person, you need to know that your voice matters,” Judy said. She encourages creating opportunities to introduce children with disabilities to other children and adults with disabilities: “It’s really important to have adults with disabilities who are engaging with your child and with you. Look for books, think about stories your child might want to read, learn from your kids, and listen to them.”
You can start by sharing Judy’s story with them. The work that she and other advocates did resulted in the strengthening of the laws under Section 504 of the 1973 Rehabilitation Act, which led to the passage of the ADA. My life is easier because of her activism.