"I feel sorry for you." Paul approached me with real concern on his face. As he explained how people 'like me' with physical disabilities caused him to feel pity, I wondered how to address the issue. Pity usually angers me. This time it confused me. After all he had Down Syndrome, we are both people with disabilities it's just that we have differing disabilities.
I said, "But you don't have to feel sorry for me ... it's like ..."
"But I do feel sorry for you," Paul said interupting me and went on to explain, "because you are different. Being in the wheelchair ..."
"It's OK to be different," I now interupted him, I really wanted him to get this. I thought I could make connection through the fact that he had Down Syndrome, surely that was the way in to a discussion he really needed to have, "Like you are different too."
"I'm not in a wheelchair," he protested but before he could continue I jumped in.
"No, but you have Down Syndrome."
That stopped him.
I love these conversations of revelation with people with intellectual disabilities. I just waited. I knew Paul was processing what I said. It's like watching a photo develop, give it time and the sharpness is amazing. I waited, as his ideas grew clear in his head.
"Yes," he began hesitantly, "I got Down Syndrome when I was six."
I've heard this before. Six is probably when he hit the school system and suddenly that extra gene really mattered. For the first many years of his life he'd just have been 'mom and dad's kid' - school changes a lot. I can see 'getting Down Syndrome at 6'.
"But," Paul brightened wanting to keep the discussion going so he pointed to his temple and said, "I only have Down's up here. I don't have Down syndrome in my legs."
I wondered then if he thought 'Down Syndrome' was just another name for disability.
"So because I'm in a wheelchair, I have Down Syndrome too?" I asked.
That stumped him, but he thought. Finally, "No, it's not the same. You have ... you have ... sit down sydrome."
Laughter burst out of me. He grinned too, though I don't think he was making a pun. Paul's world is defined in simple ways.
I'll never think of my disability in any other way.
I'm finally diagnosed.
"Hi, my name is Dave and I have Sit Down Syndrome."