By Jeff Kinney
The ability to guide one’s own life – self-advocacy – was a major topic during the 2016 Spina Bifida Association National Conference last Summer.
The importance of self-advocacy relates directly to SBA’s increased emphasis on meeting the needs of adults with Spina Bifida, a highlight of the national conference held June 25-28 in Bloomington, Minnesota. This expanded outreach is needed because most Spina Bifida clinics primarily serve youth. Successfully empowering persons affected by Spina Bifida to be better self-advocates is recognized as key to the attainment of each person’s life goals.
As the session “Transitioning Care into Adulthood” examined, services and approaches by Spina Bifida clinics to various issues can vary, which makes self-advocacy an important aspect of care.
Rachel Young, a Nurse Practitioner who serves the Children’s Hospital of Pittsburgh SB Clinic, said that through self-advocacy, individuals can determine their own uniquely “awesome” path through life. According to Ms. Young, self-advocacy allows one “to maximize ways to increase independence” throughout life.
“One example might be to permit a child with Spina Bifida to participate in discussions about his or her individual education plan, or perhaps to help decide what their family might cook for dinner that night,” she said. “Or it could be by encouraging a young adult to renew their own pharmacy prescription.”
Similar real-life examinations of how self-advocacy is employed was shared in the session “Take Charge & Speak Up for Yourself,” led by Cynthia Aquirre and her adult son affected by Spina Bifida, Jamie. A key to self-advocacy, Cynthia said, is the ability for each person to find his or her “voice.”
“You have a voice and it needs to be heard,” she said. “Never surrender your voice.”
According to her son Jamie, that means understanding yourself and identifying your life goals. “We are adults with Spina Bifida,” he said. “We each have differing levels of ability. It’s up to each of us to find our level and use it to our advantage.”
The session “Transition…Piece by Piece”, was led by Pat Beierwaltes, a registered nurse, and her son, Matt. The session highlighted Matt’s personal story of transition to adulthood through self-advocacy.
“Looking back on my life now I know there are different decisions I wish I would have made earlier,” Matt said. “For example, there were surgical choices I wish I would have made when I was younger. I’ve learned the body doesn’t heal as well when you grow older.”
Now an athletic trainer who has worked at the college level and for professional sports teams, Matt said perhaps the greatest disability in life is a “bad attitude.”
“Your life is a story of transition,” said Ms. Beierwaltes during their presentation. “You are leaving one chapter behind while moving on to the next.” But self-advocacy must be an integral part of life, she said. “You don’t have to take one specific route. You can figure your own trajectory.”
Looking at self-advocacy specifically with regard to employment was key to the session “Be Independent! Be Empowered! Be Employed!” Led by Maria Bournias, a CPA and SBA Board of Directors Member, and Millie Gonzalez, MA, the workshop examined ways persons affected by disability can improve performance of work duties. The session also provided guidance on resume preparation and interviewing for a job.
It was clear throughout the conference that participants and their families believe that life goals should be self-determined and that sound foundations should be established for each individual. Commitment and self-advocacy can lead down the road to awesome.