One in four adults in the U.S. are living with a disability, but you wouldn't know it given the lack of representation in the workforce, Hollywood, and media coverage. On the 30th anniversary of the Americans With Disabilities Act, Voices of Disability celebrates the real stories — not the stigmas or stereotypes — of this dynamic and vibrant community of individuals.The following story was written by Rebecca Cokley, the Director of the Disability Justice Initiative at the Center for American Progress and a lifelong disability rights activist.
July 26, 2020, commemorates the 30th anniversary of the Americans with Disabilities Act, arguably the most broad-reaching civil rights legislation since the Civil Rights Act of 1964. For decades before the ADA, people with disabilities — all 61 million of us, who exist in one-third of households — were institutionalized, kept hidden out of shame, and isolated from society because of a lack of access. The legislation protected us from discrimination and increased our participation in public life.
But while disability issues have become more mainstream in our culture, we still have a long way to go to reach true equality and justice — especially in light of the disproportionate impact both coronavirus and the recession have had on our communities. Simply put, there are structures put in place with the intention of keeping people with disabilities poor, even at the most prosperous times in our country’s history.
American culture values individuals based on their ability to produce and obtain capital. It’s been there from the early days of the U.S. Constitution, which is based in John Locke’s philosophy of “life, liberty, and property” — the substitution “pursuit of happiness” was considered a “glittering generality” by some historians. This construct, compounded by damaging policies, has forced the disability community to make incredibly difficult decisions. What does it mean when one cannot access capital in normative, abled ways, most typically associated with work? Instead of valuing all human beings regardless of their ability to work, American society portrays people with disabilities as either “fakers, takers, or moneymakers.” And the Trump administration has made a sport of it.
Our economic system punishes people with disabilities in a variety of insidious ways. One of these are asset limits, which are policies that require beneficiaries of public assistance programs to possess very few resources to qualify. These “means-tested” programs severely restrict people with disabilities from saving money or accumulating wealth, according to years of research. Asset limits, often outdated, oust many people to the margins, forcing people with disabilities and their families to choose between necessities like food and healthcare.
One of the major concerns about the COVID-19 stimulus packages, as one example of how this plays out, is that any cash benefit being dispersed could cause an individual to hit their income ceiling and lose healthcare as a result. This is why Ohio Sen. Sherrod Brown and Delaware Sen. Chris Coons introduced language to prevent that, and allow people with disabilities to have money in the bank with no penalty. There’s a move to standardize this protection through Sens. Brown and Coons’ proposed ASSET Act, which would raise or eliminate asset limits across several means-tested programs. Such legislation would be a life-changer for our community.
The Trump administration has been squeezing people who are already living on the edge, including people with disabilities. This includes proposing, and in some cases implementing, work requirements on programs like Medicaid, SNAP (food assistance), and housing assistance. Work requirements essentially force people to obtain full-time employment in order to access any of the means-tested benefits they need. If they do not work, they do not get help. These policies do not take into account factors like the state of the economy, the time of year, or a person’s particular field of expertise. They are particularly harmful to people with disabilities and their families given that some people with disabilities are more likely to work part-time than people without disabilities. They also attack family members without disabilities who may have to choose either to work part-time, or not to work at all to be able to care for their loved ones. There are exemptions for some major disability categories, but these create a hierarchy of disability, where some are seen as “more disabled” than others. These policies frequently do not exempt cancer survivors, people with chronic illnesses, and people experiencing mental illness.
On top of all of these barriers, many people with disabilities continue to make below minimum wage, which is already staggeringly low in many states. In 2019, the U.S. House of Representatives passed the Raise the Wage Act, which would phase out Section 14(c) of the Fair Labor Standards Act of 1938 — an 80-year-old injustice that legally guarantees poverty for a section of the disability community. Part of the historic New Deal, 14(c) still allows employers to pay people with disabilities less than minimum wage. Over 200,000 people with disabilities remain enrolled in subminimum wage employment. Legislators have also proposed the Transformation to Competitive Employment Act, which would incentivize a gradual phase-out of these programs and funding to help individuals and providers transition to integrated job settings at competitive wages.
The ableist values embedded in our capitalist system not only contribute to underpaying people with disabilities, but can also take away our lives — and this is even more apparent now that we’re almost five months and over 140,000 deaths into the badly mismanaged coronavirus pandemic. Michael Hickson, a 46-year-old Black man with a disability, was recently removed from life support against the wishes of his wife after contracting COVID-19, because the hospital made a judgment about his quality of life; he was quadriplegic and had brain damage after suffering cardiac arrest in 2017. This is an example of how doctors frame their discussions around “quality of life” as grounded in ableism and capitalism. Some states have had to reverse their policies about triaging care due to complaints that they unfairly discriminated against people with disabilities.
It is no wonder, given all the ways in which the system is tilted against us, that people with disabilities are in the streets protesting, as a key part of the Black Lives Matter movement and other movements for social justice. Because we are part of every community.
Amid a pivotal election year, it’s more important than ever for our voices to be heard. But the Government Accountability Office reports that around 60% of polling places are not ADA-accessible, and this number hasn’t changed over the last three presidential cycles. The closing of polling places, requirements like voter ID laws, and attacks on voting access are contributing to the growing disenfranchisement of people with disabilities. Given the risk of COVID-19, the need for multiple options to access the polls is even more important, with people with pre-existing conditions and auto-immune disabilities debating how to access their fundamental right to democracy while preserving their health. The solution we need is not a one-size-fits-all approach, but rather a menu of options including vote-by-mail, early voting, same-day registration, and limited (but geographically dispersed) in-person options.
Thankfully, a new generation of leaders are taking the economic needs of the disability community more seriously than those before them. In previous generations, we often had to look to members of Congress who were not disabled themselves, but had family members who inspired them to be vocal advocates for their policy priorities. But 30 years after the ADA was signed on the South Lawn of the White House, people with disabilities and chronic health conditions have successfully run for office and are carrying the banner for our community. Sen. Tammy Duckworth of Illinois, a woman of color, veteran, and a proud disabled woman, has been busy slapping down big-business attacks on the ADA, enforcing access to PPE, and more. Rep. Ayanna Pressley of Massachusetts, who has revealed that she is living with alopecia, has worked to ensure that disability data is collected in COVID-19 legislation and that people with disabilities are not erased in conversations about police violence, and has routinely discussed disability advocacy priorities on social media. Rep. Lauren Underwood, who lives with a heart condition, has been vociferous in her defense of the Affordable Care Act.
These legislators are not just motivated by a sense of charity, but by real-world knowledge of the discrimination faced by people with disabilities and chronic illnesses, and how the current systems are set up to exacerbate entrenched disparities. Let’s hope they are soon joined by more politicians who truly understand our needs and are willing to help make our American Dream possible.