Independence is a quality virtually inherent to American citizens. In fact, most would say the right to independence has been cherished in our country since the nation’s conception. It was perhaps the motivation initiating our drive for freedom and social justice in the first place. However, while the term independence is often associated with historic events dating back hundreds of years, people with disabilities see it as a quality for which they must advocate on a daily basis.
The Eighth Annual Congress of Statewide Independent Living Councils, entitled SILCs: Coming of Age, was held recently in Phoenix, Arizona. The theme of the conference symbolized not only the growth in independence of people with disabilities in the 21st century, but also the increasing recognition of the importance of young people’s views, voices and visions for the disability movement. As such, the congress included a youthled plenary session and round-table session.
Amendments made during the 1992 reauthorization of the federal Rehabilitation Act of 1973 mandated that each state establish a Statewide Independent Living Council (SILC). These gubernatorially appointed bodies are charged with promoting a philosophy of independent living and formulating state policies to encourage consumer control, peer support, self-help, self-determination, equal access, and both individual and system advocacy. These efforts are intended to maximize the leadership, empowerment, independence and productivity of individuals with disabilities and their integration and full inclusion into the mainstream of American society.
While the SILCs in most states feel the federal requirements are being adequately met, young members of the disability community are stepping forward and asking them to increase their recognition of youth initiatives and youth perspectives. “We have begun a whole new stage in the disability movement,” said Christina Mills, SILC chair for the state of California and an active 27- year-old advocate for disability issues. “Most state councils look at the number of people they are serving, and if the numbers are high, they think they must be meeting their state’s needs. But if we were to look a little deeper it would be pretty apparent that most people receiving these services are 40 to 50 years old or older.
“There is a whole other body of young people with disabilities out there that needs to be tapped into,” Mills stated, “not only to make them aware of the services that state councils like SILCs provide, but to prompt young people of ages 16, 17 or 18 to serve on these councils. They can bring a wealth of information and insight to the councils’ activities, and this is something that our state councils need to take into serious consideration.”
Several of the conference’s more seasoned participants also voiced the need for increased involvement by members of the younger disability community. “The youth presentation really opened my eyes,” admitted Bob Liston, director of the Montana Fair Housing Project and member of the Montana SILC. “It made a lot of us wake up and see that youth are an important part of this movement. Mentoring them, educating them, advising them, listening to them—this is what needs to be done, or the movement could fall through the cracks. We need to help our young people find their niche, whether through politics, policy, advocacy or social interaction. That’s where our responsibility lies.”
Pina Lemusu, a graduate student and member of the Hawaii SILC, mentioned that the youth focus of the Congress captured overwhelmingly her own personal challenges as a younger person with a disability. “I really couldn’t believe it,” she said. “It was awesome for me to see that there are young people out there really trying to explore how they can make their way in our primarily adult-driven world. Honestly, hearing the voices and ideas and recommendations of these young adults, these young advocates, was the best part about the conference. It was a great way to hear fresh ideas from those who will soon be taking the lead in our movement.”
“If we are going to be successful in our movement and in our field of service, we need to realize that those of us who have been in this business for so long need to step back,” said Michael Collins, executive director of the California SILC and co-chair of the national congress’ planning committee. “We need new energies, new ideas and new people to take the lead. We need to recruit young people to serve on our councils and committees. I haven’t heard of a single state out there that has this completely mastered yet.”
Including younger leaders goes beyond ensuring representation. Both adults and young leaders agree there is a need to educate the youth about the history of the disability movement, a history that is not currently being passed on between generations. Both established and emerging leaders feel that placing today’s issues in a historical perspective is a vital link for creating effective new leadership. “There are young people coming out of high school and college who haven’t even accepted disability identity yet,” Collins mentioned. “They are looking for some guidance when it comes to disability identity, history and philosophy; they need to know why we needed the ADA [Americans with Disabilities Act] and how we got it. We need to get them involved and give them the opportunity to carry out their own missions in this movement, and we need to give them the freedom and support to do it.”
Michael Beers, a Montana SILC member and a 22-yearold disability rights advocate, almost duplicated Collins’ reply. “We are out there. That’s all I can say. It’s plain and simple: we want to learn, we want to contribute and we want to lead. But we have to look to adults to enable us to do that. This congress was a great first step.”
Many state representatives added to their homework some of the following youth-recommended strategies aimed at more directly including youth and young adult voices in state and local committees and action networks: 1) communicate with state programs for already active youth, such as the State Youth Leadership Forums; 2) hang signs or posters in local high schools and post-secondary institutions providing contact information for disability organizations’ services; 3) reserve specific positions for individuals aged 16 to 25 on councils and committees, allowing younger people with disabilities to take a more active leadership role in community projects; and 4) make more materials youth-friendly (for instance, by using people-first language which reduces stigma by describing the individual before the disability).
by Betsy Valnes
For more information about independent living services for people of all ages in your area, visit:
National Council on Independent Living (NCIL) www.ncil.org
Association of Programs for Rural Independent Living (APRIL) www.april-rural.org
State Independent Living Council (SILC) Congress www.ilru.org/html/publications/silc
Youth Leadership Forum for Students with Disabilities (YLF) www.dol.gov/odep/programs/ylf.htm
About the author: Betsy Valnes, a young adult with traumatic brain injury, serves on the South Dakota SILC and works as the central transition liaison for South Dakota’s State Departments of Vocational Rehabilitation and Special Education. She serves as executive director of the National Youth Leadership Network, a national youth empowerment entity, and as an ex officio/mentor with the National Council on Disability’s Youth Advisory Council.