Impact Feature Issue on Parenting Teens and Young Adults with Disabilities

Chester Finn is the Chair of Self-Advocates Becoming Empowered, a national organization of self-advocates. He is also special assistant to the Commissioner of the New York State Office of Mental Retardation and Developmental Disabilities. He has been an advocate for people with disabilities since 1992. Here he shares his responses to questions about youth and self-advocacy.

• What does self-advocacy mean for transition-age youth? Self-advocacy is people advocating and speaking up for what they want in their lives. It is the same for youth, but yet a little different. Youth still have to listen to their parents and teachers if they are under 18 years. Therefore, they must talk with their teachers and parents about things that they want. They must also ask their parents to include their opinion in decisions that affect them.

• Why is it important for youth to learn how to advocate for themselves? Youth need to speak for themselves and learn advocacy skills because when their parents are gone they need to know how to be independent. Learning leadership skills gives them this opportunity. Hopefully, they are the ones who will be taking over the self-advocacy movement from us.

• What opportunities do youth have to learn self-advocacy and leadership skills at present? The National Youth Leadership Network (NYLN) teaches youth leadership skills. The NYLN has chapters in most states. Youth with disabilities also participate in state and local People First chapters and other self-advocacy organizations.

• What kind of supports do youth need to learn self-advocacy skills? What can families and schools do to help them learn these skills? Building self-esteem is an important part of teaching youth self-advocacy. Participating in organizations such as YMCAs/YWCAs, 4-H, and scouting can be important in building confidence. I remember participating in Cub Scouts, Boy Scouts and 4-H. I loved those activities and they helped me become confident. I won awards for growing the biggest watermelon and best garden. These awards and activities built my self-esteem and taught me leadership skills. Competition is good for young people; it builds character. We tell youth with disabilities that it is okay to lose as long as they tried. But we need to teach them to play to win. Participating in sports, arts and crafts, and church activities are other ways youth can build self-esteem.Parents should let youth take chances and experience different activities. When I was younger I wanted to go downtown by myself. My parents were reluctant and I had to talk to my parents for months before they allowed me to do it. But once I convinced them and showed them that I could do things independently I gained their trust and had more freedom to try things.Further, parents have to listen to their children to understand what they want. I met a mother who was making future plans for her daughter in a way she thought her daughter would like. When her other daughter told her that her sister wanted something different, she realized that she didn’t really know what her daughter with a disability wanted. It surprised her because she had lived with her daughter all her life and hadn’t really understood what she wanted. This story illustrates to me that it is very important to keep talking to young people to understand what they want for their future.Another issue that might arise for some younger individuals is that they are uncomfortable with their disability. They may consider it “uncool” to advocate for their own needs. They don’t want to stand out in the crowd in school or “hang out” with other youth with disabilities. Youth need support to understand that everyone is unique and that differences can be good.
• What is Self Advocates Becoming Empowered (SABE) doing to help youth leadership? Tia Nelis, another member of SABE, and I have spoken at the NYLN national conference. Additionally, youth with disabilities have come to a couple of SABE meetings and have spoken at our conferences. We also accept them in our groups. For example, the statewide president of New York’s self-advocacy group is in her late 20s. We also have members in their early 20s.We talk to youth about forming separate groups or joining existing groups. A lot of youth can’t participate in our meetings because their issues are school-related and they don’t understand our issues enough to participate actively.
• What actions need to be taken by all of us in the future to facilitate youth leadership? We need to encourage youth, answer their questions, and set examples. We must accept them and tell them it’s okay to fail as long as you try to win again. Sometimes we just need to be there to listen. We must communicate with youth early in their development as self-advocates.