Twenty-nine-year-old Josh is standing in front of the mirror at the YMCA gym, doggedly lifting his knees in turn, up and down, up and down. He is supported in this effort by the braces on his legs and his father Ross, standing behind Josh with his arms wrapped around Josh’s chest. Ross is the executive director and founder of AccesSportAmerica, a non-profit organization that uses sports to inspire higher function in people with disabilities. Other AccesSportAmerica athletes are also in the gym, working with other AccesSportAmerica trainers; today Ross is helping his son, his inspiration, while I stand by with my notebook.
Josh is telling me about something that happened recently: “I open the van, open the door with my hand. My hand open the door. I can’t get the van to go down and then up.” He does not make eye contact and seems intent on his exercise routine. His voice, like his gait, is somewhat jerky. The words are clear, but I am not sure what they mean.
Being Josh’s translator is obviously a role Ross is used to and comfortable in. As he helps Josh exercise, he explains easily: The lift in the wheelchair van Josh rides in has been having mechanical problems. Damien, who works with Josh, has been working on fixing it.
“He helps with the van?” I ask Josh, hoping the prompt will get him to tell me more.
“Yeah. The van went down and up. Black van.”
Josh finishes his mirror exercises and we start towards a leg press. Ross talks enthusiastically, apparently undistracted by constantly watching and supporting Josh’s movements. “Josh did some exciting things this year,” Ross tells me as we walk, his muscular arms still around Josh’s chest and his front pressed to Josh’s back. Josh walks with strength and determination, making his way across the room. When we reach the leg press, Ross helps Josh sit on the machine and move his brace-supported legs. I perch on a nearby piece of equipment, notebook and pen in hand, to watch and listen. I am impressed by Josh’s power and stamina; I am not sure I could work so hard for so long.
Among other adventures, Ross tells me, the family visited Josh’s sister, who lives in Hawaii. “We go surfing in Maui. Josh really enjoys that. Right, Josh?”
Josh’s comment on this story: “Trip. Trip. Trip. Trip.” He gestures as he speaks, with jerking, almost violent movements of his arm. It seems to me that he has something to say but cannot form the words, and that this is incredibly frustrating for him. I wonder what is happening in Josh’s mind, what stories and insights he has that I am not hearing. Ross doesn’t seem to have this difficulty; his relationship with Josh is so close that he seems to have a window into his son’s thoughts that is closed to me.
Returning to the topic of Josh’s wheelchair van and other vehicles, Ross asks me if I have a car.
“Yes, I do,” I tell both of them. “I drove it here today. It’s black too, like your van, Josh.” I hope that Josh might show interest in this detail, but he seems very involved in pumping his legs and does not comment. I drop the subject.
Instead we talk about another recent adventure. “I raced in the marathon,” Josh tells me.
This was an AccesSportAmerica marathon, a mile and a half long. Josh made it in an hour and a half with Ross assisting only by holding one hand, Ross tells me with pride.
Josh does not express pride nor any other emotion about the marathon as a whole; he is focused on a detail of the memory: “I hurt my leg,” says Josh. “I had a band-aid.”
After Josh leaves the YMCA in the van with his helper, Ross invites me across the street for a slice of pizza. He tells me that Josh has aphasia, a condition that makes language difficult. “There’s a lot more to Josh than he expresses,” he says. “Each day he says something or points out an issue which surprises me about how ‘in-tune’ and perceptive he truly is. For all his cognitive challenges, Josh is one of the wisest people I know. He can laugh when we are stressed.”
Before Ross returns to complete his work day with the other athletes at the gym, he chuckles and says, “Josh is going to talk about your black car tonight. That’s the kind of thing that matters to him.”
I stay sitting in the restaurant, going over my notes in preparation for writing this article. One moment stands out in my memory:
Ross’s capable hands helping him, Josh is using the leg press. Ross is telling me about Kim, Josh’s speech therapist. “She farts in front of Josh,” Ross confides. Josh laughs unconstrainedly at the universal humor of fart jokes, mouth open, eyes lit up with delight. Ross and I laugh too, and I see the love shining in Ross’s open face as he looks at his joyous son.
For more information on AccesSportAmerica, see http://www.accessportamerica.org/.