PERSPECTIVES: Becoming a Sibling Advocate
It was Friday, July 13, 1984. That was the day I became a big brother. With the birth of my brother Jarvis, came my expectations of hanging out, playing sports, fighting, goofing off, going to school and growing up alongside my new best friend. Some of these expectations would come to pass, but others would remain fantasy.
My brother was diagnosed with cerebral palsy and an intellectual disability. As the realization that he was not a typically developing child dawned on me, the trajectory of my life changed. My carefree nature was slowly replaced by a feeling of responsibility.
I thought of college and career options at a very early age. I thought that I had to be successful enough to support both my brother and myself for the duration of our lives. Unfortunately, waivers and supports were never explained to me. I was a gifted student and star athlete. I tried not to ever cause trouble or create more of a burden for my family; moreover, I wanted to make them proud. I was chasing perfection. Being captain of an undefeated soccer team, graduating high school with honors, receiving academic scholarships and being gainfully employed since the age of 15, all seemed to go unnoticed.
Thus, all of my struggles were turned inward until the day I suddenly found myself sitting with a gun pressed against my temple. There was no note. I went down my list mentally saying my good-byes when my mind inevitably came to my brother. “What would happen to him after our mother was gone? Who would be there with him? Who would fight for him? What quality of life would he have?” I thought.
These questions gave me pause, and ultimately saved my life. I couldn’t imagine how anyone could face such pain and adversity with a smile the way he does. If he could, so could I.
I began to realize that we would always be able to rely on one another because we’re complementary. I have exceptional physical and mental faculties, and he has uncanny inner strength. It’s ironic how my little brother is the emotional support that I always needed. He is always there to listen, but never judge. He taught me how to love unconditionally, how to endure life’s challenges and how to be responsible. But most of all, he taught me how to be a man.
As adults, Jarvis and I continue to support one another. Our brotherhood has led me to choose a career path that allows me to be of service to others with developmental disabilities and their loved ones.
Of particular interest are the challenges faced by many siblings of individuals with disabilities. Our voices often go unheard, our struggles unseen. That is what motivated me to get involved with Sibshops, the Georgia Sibling Connection and the Sibling Leadership Network. We siblings face many of the same issues as our parents in addition to those that specifically affect us. Beyond feeling alone, guilty and exhausted from the demands of caregiving, we may also experience embarrassment, resentment and pressure to achieve. Since the sibling relationship is generally the longest relationship of one’s life, it is important for legislators, agency leaders and most importantly parents to give more consideration to the role that we play.
Often, we become advocates right alongside our siblings. Decisions that affect them affect our lives as well. We have a right to our own lives independent of our siblings with disabilities, and we also have the right to be included in discussions and decision-making processes that impact our families. As the popular slogan goes – Nothing About Us Without Us!
Nick Perry and his brother Jarvis. Perry is the former public policy specialist and sibling coordinator for the Georgia Council on Developmental Disabilities.
For sibling support programs, visit:
Sibling Support Project (Sibshops): http://www.siblingsupport.org
Georgia Sibling Connection:
tiny.cc/GeorgiaSiblingConnection
Sibling Leadership Network: siblingleadership.org/
Read more in the winter 2016 edition of Making A Difference here:
