Thank you to psychologist Dr. Natalie Truba (of Nationwide Children’s Hospital) for identifying these “elephants in the room” in our webinar Understanding BDMD Behaviors for the Adolescents and Adults
Social Exclusion
Representation matters.
Thanks to our community’s collective efforts, more and more stories are shared between our families about adults with Duchenne beating the odds. These stories give parents hope. These stories give our adolescents and children hope. These stories inspire us because we are represented in them.
Beyond our Duchenne bubble, however, adults with Duchenne are almost never seen in the media or as an important figure in society. This means that in “the real world,” children with Duchenne likely won’t see images of themselves in schoolbooks, on pamphlets or magazines. They likely won’t see themselves on TV, on YouTube or TikTok.
A brief glance at the accessibility of our community will punctuate this point.
While the efforts of the Americans with Disabilities Act symbolized progress and inclusion within the greater community, unfortunately, it just wasn’t enough to fully accommodate adults with Duchenne. For example, adults with Duchenne aren’t able to enter most buildings on their own. The automatic door hand plate is a nice gesture, but our adults with Duchenne typically can’t lift their arms up to reach the hand plate. Even getting to a location independently is almost infeasible. Many of our adults with Duchenne do not drive and rarely is public transportation a viable option.
We are in need of an attitude change within the general public as well. Handicap parking is often blocked or taken “just for a moment” by able-bodied persons. Accessible bathroom stalls become the “luxury suite” in public restrooms and accessible ramps or elevators are blatantly absent in many situations.
Regrettably, this lack of representation and inclusion in mainstream society speaks quite loudly to the disabled community. It tells us that individuals with disabilities aren’t valued enough to make the public sphere accessible to them. This bias and inaction prevent the adults in our community from engaging meaningfully and independently with our society. It also inhibits the self-efficacy and self-worth of our children with Duchenne.
Representation matters.
More to Consider…