What could the Academy Awards and COVID-19 possibly have in common for people with disabilities? Stay tuned, and I’ll tell you.
First, the Academy Awards. The documentary “Crip Camp,” about a summer camp for young adults with disabilities, was up for an Oscar. Its co-director and co-star, Jim LeBrecht, has spina bifida and uses a motorized wheelchair. LeBrecht had hoped to ride up a special ramp from his front row seat to claim the Oscar for best documentary. It was a big disability hurdle to jump.
“I’ve always seen that stage with its stairs as a symbol that they don’t expect people who had mobility issues to be nominated or to win an award,” LeBrecht told the Associated Press. “It’s always been this kind of negative tacit statement.”
Sadly, LeBrecht never got to use the ramp, as an Academy Award for “Crip Camp” wasn’t in the cards. As I watched the show I saw LeBrecht in his seat once or twice, but only because I knew about his movie’s nomination and I was looking for him. I doubt that other TV viewers — or even people in the awards show’s audience — knew that LeBrecht was there in his chair, or that the ramp, which able-bodied winners vaulted onto from its side, was built because of his needs.
But Jim LeBrecht did make it onto the Oscars red carpet, and he caught the attention of writers from Variety and other Hollywood publications. (Actress and MS patient Selma Blair walked that same carpet a couple of years ago, cane in hand.)
As LeBrecht Tweeted from his seat at the edge of the ramp, it was the “most accessible Oscars ever.” So, losing wasn’t a total loss.
COVID-19 has its own disability hurdles
The COVID-19 testing and vaccine systems could also use some ramps, figuratively as well as literally. A little less than a year ago, a post on the Johns Hopkins Bloomberg School of Public Health website pointed this accusatory finger at agencies that run COVID-19 programs:
“COVID-19 has highlighted the gaps in equitable situations for people with disabilities, and that really has to change. That’s part of the reason that there’s a greater risk for people with disabilities in developing COVID-19,” disability inclusion expert Bonnielin Swenor told the Bloomberg School’s Melissa Hartman.
Swenor cited as an example drive-through testing and vaccination sites that don’t work for someone who is unable to drive or who depends on public transportation. She noted that something as seemingly simple as frequent hand-washing isn’t always possible for someone who is disabled. And if a person needs a caregiver physical distancing is almost impossible.
We need disability data
In a follow-up interview in late March, Swenor reported that the “gaps have absolutely persisted.”
Perhaps things are now improving as COVID-19 vaccines have become more widely available. But we can’t know for sure, Swenor pointed out, because a huge data gap exists when it comes to people with disabilities. For years, data have been collected at healthcare facilities regarding a patient’s age, race, and sex, and even their ZIP code, but not about a patient’s disability.
“We can’t look at outcomes in this moment of the pandemic, or really at any time, to look at differences in health care safety, access, or different types of outcomes,” Swenor told the Bloomberg School’s Grace Fernandez. There’s no data to look at.
A pair of positive efforts
Last February, the Biden administration created a COVID-19 Health Equity Task Force to address health care inequities. Hopefully, people with disabilities will be included with the other minority groups whose data are being tracked.
At about the same time, the Johns Hopkins Disability Health Research Center and the Center for Dignity in Healthcare for People with Disabilities launched a COVID-19 Vaccine Prioritization Dashboard. Its purpose is to gather data to help better understand how COVID-19 programs have been handling people with disabilities.
Hopefully, efforts like these will help us leap some disability hurdles. But Swenor has suggested something else: Whenever a discussion about inclusion occurs, people should ask, “Is disability included?”
“We all should be invested in this process, because disability is that one minority group that anyone can join at any time,” she said.
So true.
(A version of this post first appeared as my column on the MS News Today website.)
