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. LeBrecht uses a wheelchair, and he had hoped to ride from his front-row seat up a special ramp to claim the Oscar for best documentary.
“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 used the ramp, as an Academy Award for “Crip Camp” wasn’t in the cards. Watching the show, I saw LeBrecht in his seat because I knew about his movie’s nomination and I was looking for him. But I doubt that others in front of their TVs — or even in the audience — knew that LeBrecht was there in his chair, or that the ramp, which able-bodied winners vaulted onto from the side, was built because of his needs.
But he 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 carpet a couple of years ago.)
As LeBrecht Tweeted from his seat at the edge of the ramp, “most accessible Oscars ever.” So, losing wasn’t a total loss.
COVID-19 has its own hurdles
The COVID-19 testing and vaccine systems could use some ramps of their own. A little less than a year ago, a post on the Johns Hopkins Bloomberg School of Public Health website pointed an 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. She also noted that something as seemingly simple as frequent hand-washing isn’t always possible for someone with disabilities. 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 noted that the “gaps have absolutely persisted.”
At the start of the pandemic, problems included access to information and COVID-19 testing, and social distancing. Then, as time passed, the gaps included scheduling a vaccination appointment via computer and getting into some vaccination sites.
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 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.
A pair of positive efforts
Last February, the administration of U.S. President Joe Biden created a COVID-19 Health Equity Task Force to address health inequities. Hopefully, people with disabilities will be included in those 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 to gather data to help them better understand how COVID-19 programs have been handling people with disabilities.
Hopefully, efforts like these will bear some fruit. But Swenor 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.
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Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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