Jensen Caraballo's dream is that people with disabilities will be included in the community, and that they no longer will be discriminated against or "left out of the picture". His dream is personal: Jensen was forced to live in an institutionalized setting from age 15 to age 21, because there were no other options for him. At age 18, he started advocating for his freedom, which he achieved at age 21 when he moved into his own apartment. He still lives on his own, with support from personal care aides.
Jensen shares his experiences with others to promote understanding and awareness. Now serving a one-year appointment as the self-advocacy fellow for Leadership Education in Neurodevelopmental Disabilities (LEND) at the University of Rochester, he helps other fellows understand what it is like to have a disability and how to be better advocates for people with disabilities. "I've had to deal with many social workers, physical therapists, and other professionals that provide services for people with disabilities. Many of them didn't have a personal experience with disability. I bring that to them," comments Jensen.
Starbridge has collaborated with University of Rochester's LEND program for more than fifteen years, providing the family and self-advocacy component by recruiting and supporting self-advocates and family members to serve on the eighteen-member interdisciplinary team.
Carrie Burkin, Program Coordinator at Starbridge, works alongside Jensen. "Jensen is like the advocate we are always coaching people to become. He has such a gentle delivery, and his words hold so much importance and weight. When people are near Jensen, all ears are open. That's what makes him such an effective advocate," says Carrie.
Jensen has been developing his advocacy skills for years, and he believes there is always more to learn. After hearing about Partners in Policymaking® from a friend, he participated in and graduated from the leadership development program in 2013. Partners in Policymaking® prepares people with disabilities and family members to create positive change in their communities and to influence policy at the local, state and national levels. Jensen credits the program with helping him gain experience with letter-writing and testifying to public officials. After graduating, he was asked to share his experiences with independent living with program participants and graduates, which he delivered through a webinar.
When asked what advice he would share with other self-advocates, Jensen warns against leaving too much up to others:
"I learned that when I left it up to others to get the ball rolling, I would get stuck. The moment I told myself 'You gotta do something,' that's when things started to change for me."
Jensen also believes it is important to seek to understand others. He comments, "I do my best to listen, to understand people and where they are coming from. That's what I hope for when someone is talking to me."
Partners in Policymaking® is implemented through a collaborative effort of Starbridge and the K. Lisa Yang and Hock E. Tan Institute on Employment and Disability at Cornell University.