Monday, August 9, 2010

What about the siblings?

This past weekend, I traveled to Old Greenwich Connecticut for the 2010 International Sibling Conference. My wife Katie, who has a sister with an intellectual disability, was one of the central organizers of the three day conference.

The conference provided a space for siblings of people with disabilities to share, in formal and informal settings, concerns about issues facing people with disabilities and how those issues relate to siblings of people with disabilities. In some ways, the spirit of the conference reminded me of Little People of America Conferences. While there were presentations, breakout sessions and board meetings, the conference was really about bringing together all of these people with shared experiences. When you go through life facing specific challenges and frustrations, there is something very empowering about coming face to face for the first time with others who share those challenges. On an intellectual level, you learn a lot. But emotionally, you are able to take a deep breath to gather the energy you to go back out, deal with the challenges, and more importantly, try to make the world a better place.

On one level, my favorite part of the conference was meeting Chris Burke, the actor who played Corky on "Life Goes On." I sat at the table next to his during the first full day of the conference. After lunch, which was served in a big ballroom in the midst of conference presentations, hotel staff brought huge plates of cookies to each of our tables. By the time the cookies were served, I was the only one left at my table. Everyone else had gone off to various other activities. Seven or eight people still sat at Chris' table. A few minutes after cookies were served, the cookies at Chris' table were nearly all gone while the plate at my table was still full. Chris quickly caught on. Twice during a presentation about sibling issues in Japan, he stood up, walked over to where I sat, leaned over my shoulder and grabbed a cookie. I've always been thrilled by literal and figurative brushes with greatness.

I really liked the show "Life Goes On," but more important than meeting Burke, the conference resonated in the context of my life with dwarfism. The Sibling Leadership Network was set up by siblings of people with developmental, or intellectual, disabilities, and the conference for the most part focused on developmental and intellectual disabilities. But technically, my brothers, who are both average height, are siblings. And though the issues that people with dwarfism face are different from those facing people with developmental disabilities, my siblings, and siblings of other people with dwarfism, would probably benefit by networking with other siblings. Throughout my childhood, I rarely spoke with my brothers about dwarfism, but it was a huge part of my life and there is no way it didn't impact their lives.

But in some ways, the issues of the different disability types do overlap. The issue of "attention" was raised over the weekend. Children with disabilities often get more attention than their siblings. Not many years ago, a friend of mine, who has two boys, one with and one without dwarfism, said that her child without dwarfism, in a moment of frustration, once cried out "I wanna be a little person." Unlike his brother, the son without dwarfism didn't get a national conference and two regional conferences around which his family planned vacations every year. If family vacations were planned around my brother and not me, I'd be upset also.

Speaking of attention, on the train to downtown Chicago, after the flight from Connecticut arrived at O'Hare aiport, Katie and I ran into about four or five young women. They jumped on the train just a few stops before Katie and I got off the train. They were probably leaving LaLapalooza, the music festival that was wrapping up in Grant Park. When Katie and I stood up with our luggage, getting ready to step off the train, one of the young women noticed me for the first time. She leaned over, said something to another, who then looked at me, giggled and passed it on to the others. I couldn't hear what they said. Katie was a little closer. She said she only heard one young woman say, "That's the cherry on top of my day."

When Katie stepped by them to go out the door, she said, "settle down." When I followed, I picked one of young women, looked her in the eye, and said, "grow up." It's little experiences like this that really underscore the need for a sibling group for brothers and sisters of people with dwarfism. With Katie, I am able to talk to her, and ask her what she thinks and feels when stuff like this happens. But when I was younger, I was probably too embarrassed and perhaps angry to ask my brothers. But I imagine they noticed what was happening and I imagine they would have wanted to share with someone who could relate to the experience.

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