Susan's Blog

Monday, October 5, 2015

What Matters Most

I went to the Arc of the US annual conference over the weekend, without any real agenda except to attend some of the excellent workshops, to network, and to have lunch with the keynote, Tim Shriver. I’ve been friends with Tim for about 10 years, and a fan of Special Olympics for about 15 years. And now into my life comes his book Fully Alive, which was published last fall. Well, I’m a slow reader. In any case, Fully Alive fits beautifully with the book I’ve just reviewed, Steve Silberman’s Neurotribes because of the light they both shine on the historically invisible people in mental institutions.

Fully Alive is Tim’s memoir, and it explains his personal journey towards understanding “what matters most,” a phrase he threads throughout the narrative. Key to his discourse is the parallel he draws between the story of his Aunt Rosemary’s life and how the Kennedys and Tim worked to improve the lives of people with intellectual and developmental disabilities (ID/DD). And Neurotribes is Steve Silberman’s history of autism — opening the attics and closets hiding autistics and seeing them fully human for perhaps the first time. Both Tim and Steve take us back in time and recreate a world that could not bear the sight of disabled people, that saw them as broken, useless, not worthy of effort or even life.

Rosemary Kennedy’s life hit a tragic note familiar to everyone — the failed lobotomy that took away most of her intellectual ability. But before that, she had only a mild developmental disability, and a good, full life — because she was always fully a part of the family. From the famous sailing in Hyannis to being presented to the Queen of England, Rose, her mother, always insisted that everyone include “Rosie.” In the book and at the keynote Tim recalled an evening where he had dinner with his uncle Ted and his mom (Eunice). That night he took kind of a risk and asked them if — and how — Rosemary had shaped their lives. He did not mean this in terms of the movements they championed; rather, he wanted to know how they personally felt Rosemary in their heart and soul. Tim and his family were not accustomed to talking this way, this soul-searching emotional digging. But after a long pause, Ted responded with a story that went something like this:

They were at a party in Palm Beach, when they were all teens. All the kids were together hanging out, having fun, but when he looked away towards the pool he saw Rosemary, alone, with her feet dangling in the water.

Jack noticed, too. He broke away from the crowd and just sank down next to Rosemary, at the edge of the pool, feet in the water. And they just stayed there, together, sharing their private moment.

Ted stopped, and Tim realized that was all he was going to get on the subject. But actually, he’d gotten quite a lot: that Rosemary was not to be forgotten, or left out, and more than that, she offered a whole different thing than anyone else in the family. In the book, Tim talks about Rosemary as the one person in the Kennedy family who did not feel she had to justify her existence. In a culture where everyone was exhorted to always give their best to everything — and be the best at whatever they try, and never rest on their laurel, Rosemary, by virtue of her disability, could simply be who she was.

After the lobotomy she was sent to live with a nurse in a very comfortable, lovely home in Wisconsin. But no one spoke of her, and she never came home. There was no more inclusion after that. From then on, Rosie was the family’s dark secret, until much later in life, when Eunice would bring her to their home. And so Tim got to know Rosemary as an older, very disabled woman, who mattered a great deal to Eunice. It was Rosemary who fueled Eunice’s fire to improve the lives of people with developmental disabilities. Probably the fact that Eunice had felt so close to Rosemary as they were growing up, and then so bereft when she was gone — in more ways than one — planted the idea that given the right tools and treatment, people with ID/DD could blossom and grow. In true athletic Kennedy fashion, Eunice chose sports and play as the medium, and held the very first Camp Shriver in the Shrivers’ back yard, when Tim was 3. She bused in children from nearby institutions and provided them with pony rides, balls and bats.

At the keynote, Tim said that this may have been the first time some of these children ever played outside. The first time anyone cared about what they could do. The first time they were actually looked at and allowed to be regular children.

The mind-blowing joy those children must have felt! But then, don’t I know a little bit about that? In the way that Special Olympics still provides a safe, supportive haven for all of us. Certainly for the athletes, who get to be brave and put themselves out there. They get to be seen and cheered on, when (still) so little of that comes to them in this complicated, high-power culture. Like Rosie among her siblings, there they can be who they are, and the best they are.

But also, what their joy gives us, the parents, the siblings, is the feeling that at least for right then, all is right in the world. In those moments, they are fully alive, and we are fully alive, because we can see that a life lit by the outdoor sunshine is what matters most.



1 comment

I know you posted this a while ago, but I wanted to say,
I really loved that book and connected with it so much. I call my in-laws (privately) the “wanna-be Kennedys” 🙂 and I appreciated that Tim Shriver wrote honestly about how that kind of driven “succeed, succeed, be the best at everything” family dynamic can intersect with disability in ways that can sometimes be awkward and painful.

I’m not usually interested in the Kennedys or “celebrity” biographies, but I really appreciated that he wrote about his family with both love and honesty.

— added by Jill Q. on Wednesday, October 14, 2015 at 12:23 pm