Yesterday, the Supreme Court met to determine whether or not the Affordable Care Act should be invalidated. And although we can’t expect a decision anytime soon, early conversations indicate that the Affordable Care Act is likely to stay, which should protect the coverage of millions of people in the months ahead (NPR). The ACA supports tens of millions of people in the U.S. but particularly provides access to coverage for people with disabilities that might not be able to receive it otherwise (KFF).
But even with the Affordable Care Act, significant disparities exist for people with disabilities in healthcare, especially those that identify as people of color and/or LGBTQIA+ (Disability Scoop). Also, our nation is in the midst of another severe outbreak of COVID-19 (NYTimes). This not only directly impacts the health of some people with disabilities by putting them at higher risk, but it can also create complications with broader medical care and disrupt everyday life.
What’s more, people experiencing long-term complications from COVID-19 – referred to as long-haulers – are joining the disability community (STAT News). And although new vaccine trial data is promising, the rollout does not prioritize people with disabilities (NYTimes). We must do more to protect people with disabilities during this pandemic.
I interviewed Ola Ojewumi, an activist, journalist, and community organizer, on the intersection of COVID-19 and disability advocacy.
• Donate to the National Black Disability Coalition, which works to address disability issues for Black people, with an emphasis on people who live in poverty.
• Volunteer for Protest Access, a volunteer collective focused on Black Lives Matter and anti-racism related content on social media that provides captioning, transcription, and visual descriptions as requested.
• Save the Disability Disaster Hotline number, created, owned and operated by The Partnership for Inclusive Disaster Strategies: 1-800-626-4959. (https://disasterstrategies.org/hotline/).
• If you see medical malpractice against people of disabilities, report it. Here is a list of contacts for each state in the U.S.
How do you see COVID-19 impacting healthcare moving forward, particularly for people with disabilities?
The healthcare system pre-COVID-19 has mistreated people with disabilities, and I don’t foresee much of a future change. People with intellectual disabilities die at higher rates of COVID-19. This reflects a culture that doesn’t see value in disabled life, let alone saving disabled lives. (Read more about this in an article from The Atlantic). It is extremely challenging navigating the medical system as a person with a disability. We tend to have more medical comorbidities that exacerbate COVID-19. These include obesity, diabetes, high blood pressure, and we’re more likely to smoke.
Income inequality and lack of access to quality healthcare are major problems amongst people with disabilities and marginalized groups. The COVID-19 crisis proved that the healthcare system wasn’t equipped to handle a major medical crisis. It was built to meet the needs of those that can afford healthcare.
How do you think COVID-19 will continue to exacerbate these disparities?
The healthcare and hospital systems were already ill-equipped to handle a crisis, but none of this magnitude. Doctors, nurses, and healthcare workers were already overworked and exhausted. The pandemic will only exacerbate unconscious bias and medical racism (learn more by reading the investigation of Michael Hickson’s death on NPR). The quest for a vaccine is marred with complaints that not enough people of color were not included in testing. Vaccines cannot be effective in patients of color unless they’re included.
A pediatric drug commonly used to treat children with asthma, Albuterol, was proven ineffective in Black children. This was because no Black children were included in the clinical trials (NPR). I used to take that drug. This is what racial bias in medicine looks like. Racism doesn’t have to be intentional or hateful. It comes in forms as innocent as failing to include non-white children in clinical trials.
Many people have noted how President Trump and his administration’s stance on COVID-19 aren’t just dismissive but ableist. How is that harmful? What is its impact on communities with disabilities?
President Trump’s rhetoric is more than just harmful. It’s outright dangerous and puts the lives of people with disabilities at further risk. He encourages not wearing masks despite being infectious and having [had] COVID-19 himself. This may influence his supporters to view COVID-19 as something minor. It’s not because it’s killed over 200,000 people. A big chunk of those people were disabled. We are more susceptible to catching COVID-19 due to numerous factors like compromised immune systems and poverty.
His commentary will undoubtedly influence his base, amongst others, to take fewer precautions to prevent this disease’s spread. Disabled Americans are most at risk, and the leader of the free world has told us, “Don’t be scared of it” (NBC News). How can we not be terrified when it’s taken so many of our lives and that of our loved ones? We have every right to be terrified with such poor leadership at the top. Trump continues to downplay the virus as the death toll continues to rise, and we lose more people due to a preventable pandemic. We deserve better and must demand better.
What do you wish people with privilege would do to address systemic inequities in healthcare?
If you see racist behavior, report it. We need people with the privilege to find the courage to call it out instead of remaining silent. Advocate for diversity and inclusion in healthcare systems. Support programs that invest in the education of Black physicians and healthcare workers. Plan an unconscious bias training. There is no limit to what you can do to weed out bias and save countless lives.
• COVID-19 disproportionately impacts the disability community, particularly those that also have other marginalized identities.
• COVID-19 is exacerbating medical bias and making people in the disability community fearful of finding adequate medical care.
• With COVID-19 cases rising in the U.S. and around the world, we need to center the needs of the disability community in our response.