To be a Black disabled woman in America is to be unwillingly invisible in your greatest time of need. The most visible layer as a Black disabled person is our Blackness, which is constantly under the threat of scrutiny, assumed guilt, and, as logically follows, persecution.
Our pain isn’t taken seriously, as is borne out by multiple studies as well as my own experience of chronic pain. We are believed to be able to bear more pain. Some medical devices don’t work as well for us due to our skin color. These compounding issues of racism, sexism, and ableism endanger the lives of Black disabled women.
At this point, there are two basic things that disabled people and chronically ill people don’t have—upward mobility in alignment with our ability to work and access to proper health care. As a disabled person, you can never be sure you received proper care. Navigating what this country calls a health care system is difficult. If you need to see a specialist, which most chronically ill or disabled people do, you have to go through paperwork or related delays. Then there’s everything before the appointment: setting the appointment in coordination with related testing and arranging transportation.
To add insult to injury, disabling conditions can and have contributed to lack of access to equal employment opportunities, which Black people already do not have access to; this can get more complicated for those of us whose symptoms or disabilities aren’t apparent by looking at us. Essentially, thousands of eligible people each month die waiting for benefits. And if you’re lucky enough to get them? We are pretty much taking a vow of poverty, as our ability to acquire assets and generate an income is limited by our disability.
Moving forward, policymakers need to recognize that health care is a human right and not a privilege afforded to those who can afford it. Having affordable or universal health care for all would be a simple way to help solve the problem of chronically ill and disabled people being treated better, partly because being able to fully afford care would stabilize many of us. Even more would not develop the additional conditions that result from not being able to receive stable or proper treatment.
The Centers for Disease Control and Prevention’s Guideline for Prescribing Opioids for Chronic Pain, for example, has made it incredibly difficult for pain patients to receive treatment (that is 50 million Americans who used to be able to live and work, albeit in relative discomfort, left in pain). While there is a problem with opiate overdoses, restricting prescriptions has not decreased the rate of overdose and addiction. That’s because, despite exciting television plots, overprescribing hasn’t been the problem with opiates since the mid-2010s. The problem now is illegal fentanyl being sold to desperate people who try to get their medication without going through the proper channels.
Being better served in health care also means listening to disabled people. Health care facilities could hire various types of chronically ill and disabled people to give feedback in all areas. It’s hard to see what we need if no one asks us.
We’re often uncomfortable in pharmacies and waiting rooms, made to stand in line. Meanwhile, the system of taking a number seems to work well in delis, butcher shops, or motor vehicle departments. Moreover, we often don’t get the services we need until nondisabled people need them. We have asked for video doctor appointments and telehealth long before the pandemic, but once the rest of the world needed them, they became commonplace quickly.
The problem of the perception of Black disabled women is a long-standing one. It’s complicated by intersectionality—we aren’t a monolithic group with a one-size-fits-all solution. But if the world doesn’t treat white women with the same cookie-cutter approach, why do that for Black women?
With respect to generating access to equitable health care, especially for Black women, part of the answer is self-evident. The recent victories of women like Stacey Abrams, Serena and Venus Williams, Kamala Harris, and the endless list of Black women who excel, some with disabilities, show the world what we already know: that Black women can lead. And so we should let Black women lead, unencumbered, with respect to assisting in equitable health care services for disabled people. Putting more Black women in charge would not be an act of charity. The economy has lost $16 trillion due to racism, so it’s hard to avoid the conclusion that subverting racism would be profitable.
Being put in charge isn’t the only resolution here. As a Black disabled woman, I would not have to worry about being well enough to work if I could receive the proper accommodations to apply for jobs and still be considered fairly. Thus, workplace accommodations should be the norm and enforced by law.
Begin by including accommodations in job listings. So many job descriptions say that they require sitting, standing, lifting, or driving, but in practice, the majority of those jobs could easily be performed without any of these restrictions. Currently, there’s not enough enforcement of the Americans with Disabilities Act (ADA), and if there were, there’s a huge loophole in it called undue hardship. If a business can claim that accommodating a disabled person would be too expensive or cumbersome, they can claim undue hardship, which means no accommodation for disabled people or people with chronic illness.
As a small business owner myself, I understand why these guidelines are in place. But perhaps instead of having a loophole that allows businesses not to help disabled people work comfortably, there should be programs that incentivize businesses to remove the obstacles that prevent disabled people from being able to work. The Small Business Administration could be incentivized to fund businesses that are making efforts to hire and serve disabled employees and customers.
Finally, it must be understood that disabled people don’t have “special needs.” We just have needs that, like everyone else’s, differ from person to person. Giving them a separate name makes it sound like we’re being given something extra. Then when it comes time for legislation to help change our circumstances, the perception hurts our chances of success. Yes, it is possible that, in the workplace, we may need better chairs, but wouldn’t this change benefit all employees?
Give us, the chronically ill, mentally ill, disabled, neurodivergent, deaf, or blind, the same things, beginning with access to proper health care and opportunities for upward mobility in alignment with our ability to work.
Disabled people want the things the rest of the world takes for granted. While it would make life a bit more boring than what we are used to, we would rather be treated as regular people, allowed to fully thrive.
This excerpt by Tinu Abayomi-Paul is from The Black Agenda: Bold Solutions for a Broken System, edited by Anna Gifty Opoku-Agyeman. Copyright © 2022 by the author and reprinted by permission of St. Martin’s Publishing Group.
Tinu Abayomi-Paul is a writer and a disabled entrepreneur who provides coaching services to other microbusiness owners.