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Family Dynamics

Sibling conference draws brothers and sisters together in "a very fine boat"

Siblings of adults with disabilities share resources, stories and challenges.

The first international conference for siblings of people with disabilities was held Aug. 6-9 in Stamford, Conn., and brought together brothers and sisters of people with various disabilities to discuss our own needs, concerns and resources for the unique position we find ourselves in as lifelong advocates for our siblings with disabilities.

Many attendees knew each other previously from their participation in groups like the Sibling Support Project - a Seattle-based nonprofit that offers workshops for siblings of children with disabilities - or YAI/ National Institute for People with Disabilities.

Others, like me, were in the company of other siblings for the first time.

The weekend sessions were varied and rich - including discussions about employment, sexuality, family roles, sibling in-laws, Alzheimer's in people with Down Syndrome, and current research about the impact on siblings of people with disabilities - reflecting the complex concerns of siblings of adults with disabilities.

In the sessions I attended, talk returned repeatedly to housing, guardianship and plans for the future. My sister lives in a community house set up by my parents, but it is quite common for adults with disabilities to stay at home until their parents die. That can be problematic for their other kids, especially if parents refuse to discuss their brother or sister's future. As more than one sibling commented over the weekend, their parents' plan boils down to, "I'll never die, so you don't have to worry about it."

But worry, we do, with good reason, since the immortality plan doesn't seem to work out. One man with two disabled brothers and a mother who refuses to talk about the future, said he waits every day for the dreaded phone call. He said, "I told my Mom, when you die, you better go quick because I won't have time to help you," because his main concern will be to beat his brothers' buses home from their day programs.

At a panel called "Sex and the City for Sibs" people spoke frankly about how their brothers and sisters had influenced their dating, marriage and childbearing choices. Talk about the tendency, when young, to date "the fixer upper," (which is a nice way to say "loser") elicited laughter and head nodding from the packed room. Panelists voiced their fears about genetic predispositions, one stating emphatically that adoption was the only choice, others not sure what path they would take. None yet had children.

The unspoken, but ever-present undercurrent in this discussion, was that as siblings, we have done our fair share of parenting already. Additionally, many of us will come guardians to our adult siblings. Deciding whether or not to have kids is so much more complicated for us that for other people.

Though the weekend was devoted to sibling concerns, many people with disabilities also attended. Actor Chris Burke, best known for his role as Corky in the TV show "Life Goes On," spoke about his family's encouragement in his career. Tia Nelis, a self-advocacy specialist talked about an initiative in her state to allow for self advanced directives for people with disabilities. And Larry Oliveri, a teenage singer from Staton Island, brought the ballroom to its feet with his rendition of "Nessun' Dorma."

In total, the event featured dozens of experts in a packed program of timely and important issues. The only shadow was the financial reality of the conference, which was co-sponsored by ARI of Connecticut, The Kennedy Center and the Sibling Leadership Network. Conference coordinator Dr. Bob DiDomenico explained during the closing ceremony that the conference would end up in the red, and not from lack of effort in contacting corporations and foundations serving families of people with disabilities.

Many agreed that this lack of support for sibling concerns mirrors the same kind of void faced by parents of children with disabilities more than 30 years ago, and is just one more challenge we siblings now face. Likely we will have to fight our way out of obscurity, just as they did.

Helpful then to have heard from the likes of Emily Perl Kingsley, a 40-year veteran writer for Sesame Street, and one of several parents who attended the conference. She had the audience laughing and crying as she talked about feeling invisible in American culture and media and her decades-long fight for representation.

For me, Perl Kingsley captured the sense I had being there surrounded by so many people who'd had a similar life experience as she ended her talk. "We are all in this boat together," she said, encouraging us to look down at our feet for the oars that we could use to help each other go farther and faster than we ever could alone.

Then, "See that other boat up ahead?" she said, waving an arm, "We are never going to catch up with that other boat. The one with the 24-hour margaritas and tanning beds or whatever they have. But that's okay. We've got our boat, and our boat is a very fine boat."