A New Perspective: Illinois LEND Includes a Self-Advocacy Discipline

March 4, 2011

The Illinois LEND program added self-advocacy to the roster of disciplines with the acceptance of Tia Nelis, self-advocate extraordinaire. The group Self Advocates Becoming Empowered defines self-advocacy as "independent groups of people with disabilities working together for justice by helping each other take charge of [their] lives and fight discrimination." Self-advocacy is a movement that empowers people with disabilities to make decisions that enable them to be more independent. Including a self-advocate seemed like a natural expansion for the LEND program, where students are offered diverse opportunities and experiences to further their leadership and advocacy skills. Having Tia in the program enriches the LEND experience and provides a new valuable perspective.

Through LEND, self-advocates have a chance to experience leadership in a new way. Tia is learning more about the medical part of disability, which she has not learned from other leadership trainings. "While self-advocates may have significant knowledge of policy, leadership, and how to advocate for issues that may come up in legislation, we don't have as much experience in the clinical setting," says Tia. "LEND provides an opportunity to see this side of disability. This experience gives self-advocates a way to learn more about other disabilities than their own so when they work with other self-advocates they will know how to include and support them in other projects or groups they do."

While clinical opportunities and leadership development can be valuable to self-advocates, there is another benefit: other trainees can gain unique insight from having self-advocates in the group. One crucial tenant of the LEND program is interdisciplinary training and the sharing of perspectives to improve the care of people with disabilities. Only by inviting self-advocates to the table can we as practitioners truly learn from their wisdom and insight. As Tia says: "A lot of what people know about disabilities comes from books, rather than first-hand experiences with people with disabilities. I think it is important for self-advocates to be involved in LEND to help provide the perspective of people with disabilities. This way self-advocates and students can learn together."

As the training year continues, many trainees have expressed their appreciation of having Tia's perspective at every didactic session. "Having a self-advocate as part of the LEND program has been inspiring and motivating," says Gina Jones, a fellow trainee. "She has put a face to why we are in the program. Also for me, as a Family Discipline trainee, she has underlined the importance of me encouraging my 13-year-old, who has a neurodegenerative disability, to use his ‘voice.' I always tell him that it is his strongest asset." Melissa Freeman, another trainee in the nutrition discipline, couldn't imagine LEND without a self-advocate. "Tia brings to life many of the topics and issues we discuss through her extensive experience in the disability rights movement, as well as her personal experiences," Freeman said. "She is an incredible role model for our group through her passion, dedication, action, and leadership." Haviva Siegel, a physical therapy trainee, also sings Tia's praises: "She has not only clarified the LEND trainees' perspectives about people who have a disability, but has supported presenters in being more aware of how they speak about disabilities, medical issues, and to re-examining how they interact with clients and families." Tia's ability to speak-up demonstrates how self-advocates can serve as role models, especially when it comes to leadership.

Those involved with a LEND program are aware of the rigorous workload. "When considering a self-advocate as a LEND trainee, they should be an experienced self-advocate and be able to work with their coordinator to get the kind of supports they need," says Tia. Illinois LEND Director, Dr. Ann Cutler, also points out the careful planning required: "Initially, I did worry about whether some of the LEND assignments would be overwhelming for Tia, but decided that we would provide support as necessary and forge ahead. Tia is an experienced self-advocate, so she is quite good about arranging for the supports that she needs."

Other LEND programs have talked about including a self-advocate, but the Illinois program is one of the few to have added this important discipline. The Illinois LEND program demonstrates that including self-advocates is not only possible, it also provides invaluable perspective for trainees and enriches the overall LEND experience. Now, rather than the trainees experiencing people with disabilities as the subject of discussion, Tia has become an important voice in the discussion.


> Read the October 2010 AUCD website article "How to Include Self-Advocates in Your LEND Program" by Tia Nelis.