How to Dismantle Systemic Ableism, According to Disabled People

Since March 2020, Angela Meriquez Vázquez has been living with migraines, fatigue, brain fog, heart palpitations, and insomnia. The debilitating symptoms Vazquez experiences are a result of long COVID. According to an April 2022 study published in the Journal of General Internal Medicine, around 30 percent of people in the United States who contract COVID-19 develop long COVID, a post-viral syndrome that has wide-ranging symptoms, and like other post-viral conditions such as post-polio syndrome, can have a significant impact on people’s lives. 

While trying to navigate her own new chronic health issues, Vázquez, who is the interim president of Body Politic, a wellness collective that has evolved to also support long COVID survivors, advocates for more research and improved policies related to long COVID.

“We are facing a wave of disability poverty with long COVID that we’ll be unable to grapple with if we cannot keep people in their homes and accessing necessary healthcare,” Vázquez said, who also has noted that Latinx people like herself and other people of color are more likely to develop this post-viral condition. In short, the pandemic has been called a mass-disabling event and shone a light on the many struggles the disability community faces: medication shortages, delays in care, inaccessibility, and poverty, and more. This reality shift could also be a trigger for change.

In 1990, survivors of polio helped push the United States to create the Americans with Disabilities Act, which turns 32 at the end of July. While it is not without its flaws, the concept of a social model of disability can be helpful when looking at disability justice solutions. This model operates under the assumption that people are not harmed by disability, but rather, there are societal barriers that make it difficult for disabled people to access care, services, and generally succeed in society. Accommodations knock down barriers, as does inclusion. 

For disability rights to truly succeed, we need a combination of changes at the local, state, and national levels. And there are individual actions each of us can take as well.

Nothing About Us Without Us 

Members of the disability community have embraced the slogan “nothing about us without us.” South African disability activists Michael Masutha and William Rowland used this term in the early 1990s, citing it first came from an unnamed Eastern European disability activist. According to American disability activist James Charlton in his book, Nothing About Us Without Us, this phrase resonates because inclusion and “control has universal appeal” with the disability rights movement activists due to their needs coming out of “powerlessness, poverty, degradation, and institutionalism.” When we’re at the table, changes do get made, and we get our power back. 

For example, in 2021, a major milestone in disability self-advocacy was convincing CVS to drop a U.S. Supreme Court case, which included filing two briefs, explaining how the case could affect disabled people having “meaningful access” to services. This case, had it ruled in CVS’s favor, could allow federal programs to become inaccessible, as it would threaten Section 504. Section 504 is the “only disability nondiscrimination law that reaches these federal programs,” according to ​​Claudia Center, the legal director at Disability Rights Education and Defense Fund.

After CVS dropped the case, the company announced it would work in partnership with the American Association of People with Disabilities, the Bazelon Center for Mental Health Law, DREDF, and the National Council on Independent Living to work together on health policy solutions that are equitable for the disability community. 

While CVS dropping its case was an important moment, it was just the start. One way to make sure that the disability community has a seat at the table is to make sure that disabled people’s experiences and needs are included in legislative processes to begin with. American Association of People with Disabilities communications director Jess Davidson, who is chronically ill and multiply disabled, cited the Build Better Back legislation, which aimed to be comprehensive recovery assistance and guidance to help communities recover from the still ongoing COVID-19 pandemic, as one attempt to center experiences of disabled people. 

While it passed in the House, the Build Better Back legislation died in the Senate. As Brookings Institute senior fellow Elaine Kamarck writes, salvaging parts of the Build Better Back legislation is possible, if parts of the legislation are introduced piece by piece. 

“One of the things that it required was that people with disabilities must be involved in the implementation of home and community-based services funding,” Davidson says. She remains hopeful that future legislative efforts, both at the federal and state level, could integrate consulting the disability community. This also includes older aging adults, and as the National Center for Healthy Housing notes, “low-income older adults have a particular need for interventions addressing both housing and individual health risk.”

Pushing politicians to better serve disabled constituents can also be done in accessible ways. As COVID-19 continues to affect access needs, it can be difficult for some members of the disability community to show up to events in person, but actions can very much be taken virtually. Davidson recommends that when the U.S. government is accepting feedback to change regulations, disabled people be given an accessible platform to share their experiences.

Funding Disabled People 

Once people are showing up for disability rights, the next step is to fund improvements to the quality of life for the disability community. Disabled people are more likely to live under the poverty line in comparison to non-disabled people. According to Cornell University’s online resource for U.S. disability statistics, 25.1 percent of disabled people between the ages of 21 and 64 lived below the poverty line in 2019. One issue likely contributing to this is unemployment, as the same resource found that unemployment for disabled people actively looking for work was twice that than for non-disabled people. 

How do we address this? Increasing social security funding, fund equitable access to housing, as well as healthcare options. 

According to the National Council on Disability, disabled people are twice as likely to live below the poverty line than non-disabled people. Different factors that contribute to this include high medical costs, low social security disability payments, sub-minimum wage, and a lackluster paid medical leave system (if people are paid at all). 

It can’t be all on mutual aid and private donations: Federal and local governments must fund programs that help disabled people. Luckily, we have success stories that could be replicated across the country. Jules Good, founder and consulting lead at Neighborhood Access,  a non-profit that works with community organizations to improve accessibility, points to Chicago’s All Stations Accessibility Program (ASAP), a program run by the Chicago Transit Authority, as a solid example of a city that is funding changes in infrastructure for its public transportation. 

“Currently, 100 percent of the Chicago bus and rail fleet is accessible, and a little over 70 percent of its stations are accessible,” Good said. “ASAP demonstrates a major investment and long-term commitment to accessible infrastructure, which I think is quite amazing.”

In another example, Pennsylvania has received over a billion dollars in settlement funds for damage done by the tobacco industry. Even with secondhand smoke, tobacco has led to some people experiencing new or worsening asthma. Good said that the state has allocated a chunk of its tobacco settlement funds to home and community-based care.“The last allocation allowed 3,000 more residents to access home care,” they said. 

“I think both of these examples,” Good continues, “show that legislative action and prioritized budgeting is an important way that states and municipalities can invest in disability justice.”

People with chronic health conditions have long needed paid medical leave, and the pressure to work after contracting COVID emphasizes how not only currently disabled people would benefit from paid sick leave, but as a society, we all would as well. Given that disabled workers and workers of color are less likely to get paid if they take sick leave, expanding paid sick leave confronts both ableism and racism. And it may lessen the risk of people developing long COVID.  

“Taking available sick leave, even for mild infections, is also an act of solidarity for those whose infections require more sick time, and an opportunity to educate colleagues and employers about the risk of long COVID,” Vázquez said. 

For companies of 15 people or more, some Democratic lawmakers have put forth a bill that would require employers to grant people seven paid sick days a year, that would be paid by the employers. It has 159 co-sponsors, but the bill, the Healthy Families Act, which was introduced in April 2021, has not yet passed the House. Also in April 2021, a bill, the Transformation to Competitive Integrated Employment Act, with 54 co-sponsors that would phase out subminimum wage for disabled people and give some financial assistance to companies who would transition to a model of fairly treating disabled workers has not passed the House either. These are both plans that could improve the lives of disabled Americans, Congress just needs to prioritize them. 

What Allies and Other Disabled People Can Do 

Disability justice is an ongoing process because inaccessibility takes a long time to dismantle. As a society, we need to stop questioning whether or not tools that help disabled people are beneficial. For instance, it should not have taken a global pandemic for companies to realize that people can efficiently work from home. 

As Ed Yong wrote in The Atlantic,  “respecting the needs of immunocompromised people isn’t about disproportionately accommodating some tiny minority; it’s really about empathizing with your future self.”

There are also ways that people can step up to help the disability community close to where they live. Many city council and school board meetings are now hybrid – you can always call in to ask for mask mandates to be reinstated to protect your community during the COVID-19 pandemic. You can also send emails advocating for a variety of disability causes, including for long COVID.

“Individuals can write to their local public health officials, city, county, state, and federal policymakers demanding local data about the prevalence and impact of long COVID on their communities and requesting more public education on long COVID,”  Vázquez said.

If you have financial resources to help people, you can log onto social media platforms like Twitter and see which members of the disability community are looking for help. Community care is important, and that can include sending money to people who need help paying health-related and other bills, as well as dropping off items from the grocery store and pharmacies near you, and helping with existing mutual aid collectives. 

“When I engage in all of these things, it helps me to feel more hopeful and like my actions can have a tangible impact,” Good said. 

We cannot view disability rights as a checklist to meet the minimum standards for access, and not hold people accountable when they fail to include the disability community. Instead, we have to fight for a better society where disabled people are not just included but thriving.