Frontline Initiative: Advocacy and Voting
Becoming a Self-Advocate
John G. Smith
People with disabilities, and especially those with intellectual and developmental disabilities, often get left out. That’s why advocacy, and learning how to be a self-advocate, is so important—it's as plain and simple as that. Throughout my life as a person with cerebral palsy, I have sometimes been left out or not given a chance, but it seemed to happen more often as I was growing up. That was partly because it was the 1960s and ‘70s and people with disabilities did not have the rights we have today, and partly because I was not as confident in myself as I am now. Somehow, it even made sense to me when I got left out. I needed encouragement from others to start advocating for myself. Sometimes this came through the adults in my life, like my parents or teachers, but I think the push for me to become a self-advocate mostly came through my friends.
My earliest memories of needing to be a self-advocate came when I was in elementary school. I did not attend my neighborhood school, but instead went to a public school across town. That was where all the kids with physical disabilities went. We received physical therapy when the other kids were out on the playground, and we ate lunch apart from our peers. Other than that, we were regular students, and I didn’t think much about being left out of some things. When I was in sixth grade, a friend from my class who didn’t have a disability asked me why I didn’t eat in the lunchroom. He wanted me to join him for lunch and then go out to the playground with everyone else. I hadn't thought about that, but it was cool that my friend asked me. I needed to advocate with my teachers because I was asking to do something different than they expected, and my friend agreed to advocate with me. When we spoke up, I remember the teachers were worried about how I would carry my plate to the table. My friend agreed to help—he stood by and was an ally for me. Sounds pretty simple, right? It was a big change in both my school and my life. It made me realize that I did not like to be left out!
My friend raised my expectations, gave me new ideas, then encouraged and supported me to go for it! I have a lot of stories like that because I had, and still have, a lot of great friends. A great DSP has that same desire: a desire to help the people they support to follow their dreams and take reasonable risks as necessary to have a great life. They are ready to advocate with the person when people or policies get in the way. I encourage you to suggest new ideas that match the interests of the people you support and assist them in advocating to make it happen.
Another time I needed to advocate for myself was when I was reaching the age when most of my friends were getting their driver’s licenses. I wanted to try for mine too. My parents were against it because of the risks. Nobody else, including the driver’s ed teacher at my school, seemed to know if it was okay for me to drive a car. My friends sometimes let me try driving their parents' car. Yikes! I hope they’re not reading this!
Before I could advocate for a chance to get my license, I needed to do some homework. I learned that there were programs where I could be evaluated by experts. This information gave me hope at a time when I was frustrated, but there were challenges. The evaluations would cost money that I didn’t have, and I would need to travel 80 miles… and I didn’t drive. I needed to advocate with my vocational rehabilitation counselor and convince her to pay for the evaluation. I also had to ask a very busy friend to give me a ride so I wouldn’t need to ask my parents. Becoming informed and asking for help was hard work for me. But I did get my driver’s license.
Again, think about how you can support people to find information and resources, and then advocate to chase their dreams.
I’ve attended a few protests, but I still need to work on being confrontational and getting in people’s faces. Sometimes that is what advocates need to do.
As an adult, I have become an advocate working with other people with disabilities and asking for larger changes. This means writing emails and talking with legislators about issues like closing institutions, putting more money into waiver programs that help people live in the community, and of course, working to raise the wages for all of you, the DSPs who make our lives possible. I also try to be a mentor for younger people with disabilities. I think it’s a sad statement about our society, but all people with disabilities need strong self-advocacy skills to get what they want. I’ve attended a few protests, but I still need to work on being confrontational and getting in people’s faces. Sometimes that is what advocates need to do.
We need more DSPs who are committed to advocacy, both for their jobs—so you are treated like the professionals you are—and for the people you support. I think DSPs are in a perfect position to watch for the things the people you support are wanting now and into the future. Here is my advice.
Become a stronger advocate:
- Talk with your colleagues and supervisors about the changes that would improve your working conditions. Think about what you can advocate for at the agency, or at a larger systems-level, that would better support your work.
- Learn the issues that affect DSPs the most and vote. Some candidates may be more interested than others about the needs of DSPs and people with disabilities.
- Always talk with and observe the people you support to learn about their dreams, goals, and what they may want to advocate for.
- Remember the best way to advocate for any person you support is to help them advocate for themselves.
Support people with IDDs to:
- Prepare for the next election by learning about the candidates and find out where the person should vote—if they want to vote.
- Explore the websites of disability advocacy organizations to learn about current issues and initiatives.
- Take reasonable risks and ask for supports that are out of the ordinary to reach their goals. This is the only way systems get better.