Perspectives: Not Mia’s Reality
At the HCBS (Home and Community Based Services) Conference in Washington DC in August, one of the keynote speakers was a young woman who stars in the TV series “Born This Way.” Think of it as a reality version of Friends, but the stars all have Down syndrome. Much like the coffee shop in Friends, they hang out at a place called Leaps and Boundz that appears to be a jazzed up Day Center with cool decor, recreational equipment and popcorn.
Unlike Friends, their parents are also featured in the show, commenting periodically about their experiences as the parents of young people with intellectual disability.
So far in my binge watching of Season One, only a couple of the cast work despite the fact that they are all very articulate and introspective in a way that seems very sophisticated. One young man is working on a rap album. The young woman who spoke at the conference has a line of tie-dye apparel called Megology. They have dating and relationship dilemmas that are reflective of their age, and they appear to be working them out independently. They have various experiences like road trips and social events that seem pretty typical except for ever-present parental supervision, permission and commentary.
My advocate friends and colleagues have some angst about the show. One of them refers to the series as “inspiration porn.” Ouch! But her point is that it’s staged to elicit both sympathy and admiration, neither of which are reactions appropriately associated with people with disabilities just living their lives. She thinks the parental discussions of their challenges are too gratuitous. Another friend says, unlike the reality show with little people who are co-producers of their series and spin-offs and have content control and share in the profitability, this show is produced ABOUT these families with no such control and profit sharing.
All the stars have Down syndrome and discuss it. It’s hard to tell how staged this is. In my experience, Mia doesn’t talk about herself as a person with Down syndrome and neither do her friends. She just is who she is. There’s also aura of privilege. One young woman’s parents are paying for her to have private dance lessons so she can fulfill her dream of being on Dancing with the Stars.
There are all kinds of reality shows. This cast is at least diverse, representing African American, Hispanic, White and Asian young people with disabilities. People with disabilities are under-represented on TV, but is this the reality we want to show to audiences that may have no context or experience? Is this reality for most of the families trying to raise young people with disabilities?
A&E markets the show saying that these young people are “defying society’s expectations.” Maybe the question is, “What are our expectations?” Many columns ago, I shared how the pediatrician who was in the hospital when Mia was born advised me to take her home and treat her like any other child. With that one piece of advice, he set my expectations that she could have a life like anyone else. Should we not expect that “even” folks with disabilities should work? Plan “parent-free” social lives? If this is where we still are as a country, isn’t this dismaying? Lots of questions here, what do you think?
Continue reading Making a Difference's Fall issue:
To read the Spanish version of Making a Difference, click here.
Listen to the audio version of the magazine by clicking on the blue "Play" button below:
