No Need to Feel Sorry
Last week, as part of my current care-giving role, I assisted an older gentleman named Stuart with his personal care routines. Stuart is recovering from total hip replacement surgery, and as such, he needs more assistance than usual. I helped him to shower and dress, and I cleaned up after him in the bathroom as well. As I held my nose, I reminded myself: This, too, is an act of love.
As Stuart and I sat eating lunch at the kitchen table, he noticed the website I was reading: Autism After 16. He tried to sound out the words, and then, failing that, he asked me what it was. It was then that our conversation turned to the topic of intellectual disability.
“Autism, oh yeah,” Stuart said. “I know about that. It’s something…that’s when something’s…different physically, right?”
“Well, sort of. Autism is actually related to the mind,” I said, trying to explain a complex neurological condition in a way that he would understand. “It means that some people’s minds work differently than others.”
“Oh, okay,” Stuart said. “You know, there’s a guy at my church who has autism. He comes to the services sometimes.”
“Cool,” I said. “I bet since you’re an usher, you help him find a seat, right?”
“Right,” Stuart replied. Then he paused, and said, with a tone of melancholy in his tone, “I feel sorry for him.”
Bear in mind, Stuart himself has been diagnosed with an intellectual disability, though he adamantly refuses to acknowledge this diagnosis. Bear in mind, too, that Stuart was born in 1936. He grew up in a time when people with intellectual challenges were often institutionalized. He grew up in a time when people with disabilities were overtly rejected by society. In the course of previous conversations, I’ve come to realize: Stuart equates having an intellectual challenge with stigma and isolation.
I gathered my thoughts. Though I did feel a stab of hurt at his comment, I also saw an opportunity. Despite my discomfort, I knew that Stuart’s words weren’t meant to be hurtful. I also knew that they came from a lack of understanding.
“Well, about that,” I said gently. “Did you know that my younger brother, Willie, has autism?”
“Oh yeah?” he said, sounding interested.
“Yeah. And, though he does have some big challenges in his life, he has a lot of things that come easily to him, too. He has amazing gifts.”
“Well, he’s super-talented at music…”
“Like me!” (Stuart loves to pound on his drums and play his harmonicas with all his might.)
I laughed. “Yes, like you, he really enjoys playing instruments. He’s also a good artist, and he’s got a fantastic sense of humor. Always joking around…”
I paused, raising my eyebrows for dramatic effect. Stuart smirked and laughed; he’s always playing pranks and making jokes.
“…just like you,” I finished the sentence. “So, even though he’s different from you in some ways, he’s a lot like you in other ways. And he’s come a long way in his life, to have all that he has now.”
I wanted to add, “He has a home. He has a family who loves him no matter what. He’s got a work program, piano lessons, and activities he enjoys. And he’s my brother, and I love him. So there’s no need to feel sorry for him,” but I couldn’t say anything more. I felt myself choking up, so I stopped. But I knew that the overall message came across by the way that Stuart smiled at me.
There’s no need to feel sorry for my brother, or for any of us who left “normal” a long time ago. We don’t need people to pity us; we need people to walk beside us. We need compassion. Understanding. Patience. Friendship. These are same things that you need, because they are the things that bring us together, the things that sustain us all.