Behind Schedule

By Rachel Patterson
Association of University Centers on Disability (AUCD)
Sibling Leadership Network- D.C. Chapter

I’ve set out to write this post about 20 times. Those at the Bethesda Institute Blog know that this post is far behind schedule. When they first contacted me back in April, I promised them a post within a matter of weeks. But every time I sat down to write, I found a reason to avoid it. I had much more pressing work to accomplish, or other tasks to complete. I was too tired or stressed to write well.

But the reality is that I struggled to start this piece because I don’t know what to say.

They asked me to write about being a sib, about the Sibling Leadership Network, about the state chapter in Washington DC that I helped found, and the reasons why the disability community should pay attention to siblings. I was excited by these topics because I feel strongly about them. Yet every time I sat to write down those talking points I know so well, they felt fake.

I think we all know the talking points – we talk about aging parents and changing service systems. We talk about the importance of sibling relationships. We talk about the great love we share for our brothers and sisters.

And I struggled with those words, not because they are untrue, but because they have become platitudes. Because I think we are afraid to say the things we don’t know how to say.

How do we say that being a sib is really hard, but not the end of the world?

Growing up with a sibling with a disability can be an incredibly challenging experience. For every happy moment, there are also moments of extreme challenge or grief or fear or pain. Medical news, behavioral challenges, society at large and the disability community itself contribute to those moments. I have not yet found a way to say that being a sib is neither joy nor pain, neither tragedy nor triumph, and that we sibs are neither victims nor heroes. Like most people who face challenges in life we are shaped, but not defined, by our experiences.

Then I remind myself that I am one of those people not telling those stories.

So in this first post I’ll start out by saying this: I’m a sib. My sister Amy has inexorably changed and challenged my life. I cannot imagine our family any other way, but sometimes I wish things had been just a little easier.

We need siblings to come together so that we can figure out a way to tell these stories. We need a place where siblings won’t feel the awkwardness of society or the judgment of disability professionals.

Only in that safe space can siblings tell our stories and begin to weave a more complex narrative of who we are, what brings us together, and what role we can play in the disability community.

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