In the fall of 2006, when I reached out to the Floquet-McGovern family as part of a photography project about raising children on the autism spectrum, I thought I’d spend one afternoon at their house in western Massachusetts. I spent 12 years with them instead.
Ethan was 9 when I met him, and I wondered about his future. Would he graduate from high school? In adulthood, could he hold a job? Would he live independently? As his father poignantly asks on camera, “What’s his life going to look like when he’s 59, when we’re gone? What’s that going to be about?”
Following Ethan for more than a decade allowed me to tell his specific coming-of-age story, as well as examine if and how society is equipped to care for the growing population of young adults with developmental disabilities. There are over a million 16- to 24-year-olds with developmental disabilities in our school system. As they age out of the system, what services will be available to them?
The doctor told Ann that John had severely damaged his spinal cord and was paralyzed from his neck down. He was able to swivel his head from side to...