Youth with Duchenne's need flexible visions of adulthood

By Megan Jones

Young men with Duchenne muscular dystrophy do not identify themselves as being “disabled” despite the fact that most use wheelchairs, according to a Holland Bloorview study that tracked their move into adulthood.

For two weeks, 11 youth aged 16 to 27 were given cameras and asked to create photo and audio diaries about how they felt about becoming men. They were then interviewed by researchers.

Participants consistently emphasized that they weren't “disabled,” but were “normal” and “a typical guy,” the researchers said. For example: “I have a condition, like cancer. I don’t have a disability.” And “I try to live my life as a normal.” One respondent described a disability as caused by “something a person does,” while a condition like Duchenne’s was “not your fault.”

The researchers coined the term “narratives of non-difference” to describe the ways in which the young men tried to minimize or distance themselves from a disability identity.

They listed school achievements and plans to find paid work and live independently as indicators that they were living "just like everyone else."

They reported that they didn't like to think about changes in their health over time (the muscle weakness caused by Duchenne's eventually affects the heart and breathing and is fatal by age 30 to 40). Talk about the progressive nature of Duchenne’s was avoided.

“Nothing stops me and gets in the way of my life,” one 16-year-old youth said. “I just stay positive and don’t worry about the future.” Instead of thinking about the long-term, the young men said they focused on achieving regular milestones in the immediate future.

Lead investigator and Holland Bloorview senior scientist Barbara Gibson says that while it’s important to stay positive, the tendency of the young men to resist a disability identity could have negative impacts.

Aligning themselves rigidly with non-disabled peers may mean they don’t think about and plan for a future where their medical needs become more complicated, Barbara says. For example, youth with Duchenne's need to decide whether or not they'll use a ventilator as they age, and this needs to be planned in advance.

Study participants equated moving out on your own with adulthood, but this may not be workable for some people with Duchenne's, Barbara says.

It's not surprising that these men have picked up on North American values about what constitutes "success" as an adult: leaving the nest and collecting a pay cheque.

However, the study suggests these dominant social values may be reinforced inadvertently by rehab professionals who support youth with disabilities as they transition to adulthood.

Barbara says many transition programs offer a narrow definition of what adult success looks like and take a black and white "checklist" approach. Tip sheets that emphasize independence and financial self-sufficiency can be problematic for youth with Duchenne’s whose health deteriorates in early adulthood.

"The message of independence in these transitions documents comes out loud and clear," she says. "Independence is presumed good and dependence is bad."

Barbara says clinicians, parents and teachers “need to create space for alternative, but equally valuable, life trajectories."

She suggests transitions programs need to encourage clients to set goals that include a variety of lifestyles and timespans. For example, perhaps a good life for some young men with Duchenne's means continuing university studies without plans to work. Or maybe the goal for some clients is to enjoy passions like wheelchair hockey. Goals that involve living well in the present are just as important as those in the future.

"Professionals need to be aware of how narrow, dominant views of what a 'normal' life looks like can affect their clients," Barbara says. Rehab clinics are a starting place for broadening the discussion of what a satisfying adult life looks like. Peer-to-peer programs could also be a good place for young people to talk about their challenges and successes.

"Right now there are almost no role models for thinking about living with Duchenne's as an adult in a different way," she says "The dominant story is so dominant that you don't hear about alternatives.

“Through advocacy groups, people with other kinds of disabilities have begun to talk about disability in a different way. It isn't about constantly trying to deny the disability or live your life normally. But about living a full life with disabilities, and options for how that could look."

Barbara says that because the symptoms of Duchenne’s appear after a child has had a typically mobile early childhood, the young men see themselves differently from children who are born with disabilities. “They identify more with sick people than with people with disabilities.”