By Nancy Webster, Vice President of the Board of Directors of The Arc of the United States.
Being a sibling of a person with an intellectual or developmental disability (IDD) is interesting, funny, frustrating, proud, challenging, loving and respectful. A long-lasting relationship that adapts and evolves, it’s a partnership that not everyone understands. But other siblings do.
In any family, brothers and sisters often think of themselves and each other very differently from the ways parents do. Even when we were young, I could usually convince my parents to let Martha try something they were worried that she could not do by telling them that I would do it with her. It was my belief in her that gave her the courage to learn how to swim, climb up the slide and care for her prosthesis. Today, when Martha wants to try something, we team up to figure out how to tell and show others, “here’s how it can work.” We know we’re stronger together, and so together we have learned advocacy. Martha calls us “the sister team.”
“Martha inspires me in many ways and we are a wonderful and strong team.”
I often think how wonderful it would have been for us to grow up knowing other siblings. How amazing it would have been to hear another sibling’s stories – to learn how to manage something differently, to share anger, to boast of an achievement that to my friends might seem trivial, but another sibling knows the triumph.
Frequently I talk with adult siblings whose parents are aging and are now facing the challenge of learning all of the intricacies of supporting his or her sibling. In the interest of “protecting” them, their parents have not shared information. Where can they turn for guidance and support? The Arc’s National Sibling Council is a welcoming network that identifies with siblings and helps them connect with other siblings to share information and experience. It is exciting to think that I can call someone and ask “how did you know how to….?” “What can we do about…?”
This is an opportunity to connect and improve the lives of future siblings and make their paths less daunting. I’m thrilled to share Martha’s and my story, and I hope you join me on The Arc’s National Sibling Council.