Last month, the Americans with Disabilities Act (ADA) celebrated its 30th anniversary since becoming law on July 26, 1990. The ADA made it illegal to discriminate against anyone who is disabled, and much like the Civil Rights Act of 1964, which it was modeled after, and Section 504 of the Rehabilitation Act of 1973, which says that the disabled cannot be denied federal funding, the ADA was a result of a long- and hard-fought battle.
While many applaud the law that protects anyone who has “a physical or mental impairment that substantially limits one or more major life activities, a person who has a history or record of such an impairment, or a person who is perceived by others as having such an impairment,” disabled people of color and advocates say a lot more work needs to be done to advance the cause of disability justice.
“It’s a floor, not a ceiling. The law essentially says, okay, you’re here and I recognize it,” Wilson said. “But the problem with most laws is that even if they technically apply to everyone in the same way, you often still have to have a certain level of access or power in order to take advantage of them.” Wilson, who was born with cerebral palsy and grew up in Brooklyn, explained that she ended up in civil rights law because of a sense that understanding the law would help her better navigate her own life as a Black disabled woman and a desire and the need to advocate for people who do not have the resources to do so for themselves. This bigger tent is the beginning of what advocates call disability justice, not to be confused with disability rights.
“One of the major things that shaped me most as a kid was watching my mom fight with the Board of Education about my busing to school, because it was either late or just didn’t show up,” Wilson recalled. Around age seven, she started speaking up for non-verbal kids on the bus, whose wheelchairs, for instance, weren’t properly secured. “That showed me how people with disabilities were viewed and disregarded, and it was also my first real advocacy experience,” Wilson said.
Since 1990, people with disabilities and advocates have slowly, but urgently, moved the conversation forward and the media has slowly responded in kind. Thanks to the umbrella of justice that Black Lives Matter (BLM) fights for, Black people with disabilities have been ramping up their calls for justice. Anyone who watched the 2020 Democratic National Convention on August 20 saw a video that included Vilissa Thompson—a BLM activist and creator of Ramp Your Voice and #DisabilitiesTooWhite—representing the disabled community in a space traditionally reserved for white cis men. The fact that Thompson was featured was of huge importance to Wilson, who hopes that in addition to the larger conversations around society and disabled people, that more diverse voices will be enfolded.
Justice for All (Really)
“Disability justice is where I see more deaf and disabled BIPOC (Black, Indigenous and people of color) folks, whereas a lot of the larger disability rights people are very white,” said 41-year-old Jen Deerinwater, founder of Crushing Colonialism and a member of the Cherokee Nation of Oklahoma.
“Just because we share one form of oppression does not mean that we don’t still have privilege within those spaces,” said Deerinwater. “Cis men are more centered; white people or more centered. We have every gender, race, ethnicity, religion, age and types of disabilities and illnesses, which means that a one-size-fits-all does not work when you talk about the needs of disabled people.”
Basically, the disability community is huge (it encompasses the mental and physical) and as a result of its size, privilege, power and race are amplified. “You can’t say that you’re for the disabled community if you are pro-cop, because almost half the people killed in this country by police have a disability and about half of those people have a mental illness,” Deerinwater said. “You can’t say you stand with disabled people, or with Native people or with people of color when you’re trying to elect politicians who support law enforcement or the prison-industrial complex.”
Deerinwater, a staunch BIPOC activist for Native and disability justice, who identifies as bisexual and two-spirit, has contended with chronic joint and skeletal pain, in addition to a host of other health issues since she was a teenager. Having grown up in rural Oklahoma, Deerinwater witnessed the pervasive poverty permeating Indian country and the underfunding of healthcare that the community receives for abled bodies residents, the disabled notwithstanding. From scarcity in housing to employment to healthcare, Deerinwater said Indigenous communities have specific needs that are inevitably compounded for people who are disabled.
“The American Indian and Alaskan Native community in this country have the highest rates of disability of any ethnic or racial group, per capita, and that per capita piece is important,” said Deerinwater. “We also have a lot of pollution on our lands because of fossil fuels and other developments, or mining projects and we have very high rates of diabetes, asthma and hypertension.”
These were the kinds of facts Deerinwater carried with her during the week of August 16 at the Congressional Native American Caucus, the rural and disability council meetings and the environment and climate crisis council meeting, in hometown of Washington, DC, in mid-August, only to end up disappointed by the minuscule attention given to Indigenous and disabled issues. It’s this kind of erasure that gnaws at Deerinwater, who also sees disability justice as getting ahead of the problems that can actually create disabilities and illnesses where they didn’t exist, such as from pollution and police violence.
“Think about when mace starts flying or people are shot and lose body parts,” said Deerinwater. “This creates trauma. People can get PTSD or have their existing PTSD made worse. And yes, disabled people do tend to be heavily targeted.” To Deerinwater’s point about the ways in which law enforcement’s deadly practices create disabilities, 29-year-old Kenosha, Wisconsin-resident Jacob Blake is now paralyzed from the waist down after being shot seven times in the back at point-blank range by police on August 23.
As part of the Movement for Black Lives’ platform includes replacing law enforcement with experienced health professionals who could better serve someone having an emotional or mental health crisis, Wilson agreed with Deerinwater that a disproportionate number of police encounters with the disabled usually end fatally.
“The official estimates are somewhere between a third and a half of people of color or Black people who are killed by police are actually disabled people of color,” said Wilson, who notes that many people estimate the numbers to be higher. “Also, we often talk about policing and race in the context of a mental health crisis, but it’s also a risk to people of color who are disabled and who have physical disabilities because our movements are sometimes incorrectly interpreted as being suspicious. For example, I’ve heard stories about sign language being misinterpreted for gang signs.”
Wilson points to the case of 23-year-old Elijah McClain from Aurora, Colorado and chronic asthma sufferer, who was not only placed in a chokehold by police after someone called the law on him for looking suspicious, but was then injected, by the paramedics, with a powerful sedative called ketamine that ultimately killed him. “There you have an example of the actions of the health system, combining with the actions of the criminal justice and police system, resulting in the death of a Black person,” Wilson said.” That’s racism and ableism.”
Another 30 Years
“Society is slowly examining our relationship with a hierarchy that places white Christian, able-bodied, hetero males as superior,” said Jeanine D. Costley, who teaches diversity, race oppression and privilege at NYU and at Medgar Evers College’s School of Social Work. “One of the most important things we can do is to develop an awareness regarding ableism and become an advocate. We should ask ourselves: Are we consistently ensuring that all individuals can utilize transportation, education, access to stores, are there interpreters available, are there ramps that assist all bodies to enter, is there Braille available, are there seating arrangements that accommodate all people?”
What’s more, said Costley, is that “individuals living with disabilities are twice as likely to live below the poverty line” and living in poverty is likely to increase instances of disability. Costley’s statement echoed what Deerinwater said about one’s environment creating disabilities, whether it’s from bad air or bad police, and the intersection of housing insecurity, BIPOC experiences and disabilities. The fact is that the majority of people who have experienced homelessness for at least a year are disproportionately “struggling with a disabling condition such as a serious mental illness, substance use disorder, or physical disability,” according to the National Alliance to End Homelessness.
“The enduring overrepresentation of Black persons in the United States’ homeless population has serious implications on medical and mental health disparities, as well as mortality rates,” said Costley. “The extreme stress, anxiety, isolation, and sleep loss that come with homelessness, worsen mental and physical health problems, demonstrating the vicious cycle between homelessness and illness.”
While advocates know that the slow progress to disability justice is a result of a slow-moving culture, they’re not as optimistic that the next 30 years will be very different from the first 30, unless folks in power turn their attention to access over equity. Wilson said that the ADA established rights, which many saw as granting equality, but not accessibility. That means if five children all had the same-sized box to stand on to see over a fence, but some needed two boxes or even help to get onto the box in the first place, and still couldn’t see over, then the system isn’t just and the fence may need to come down altogether.
“The equality framework means we get to go to the same schools. But when we go to the same schools, there are often still questions about whether we have the same access, the same opportunities at those schools,” Wilson said. “Critical Race Theory scholars, for example, have long argued that we would all benefit if we started thinking, not necessarily in terms of equality or in treating everybody the same, but about what we need as a society, in terms of accommodation, in terms of accessibility that is, in terms of what people actually need to thrive, even if that means different people get different things.” It is only when the nation begins to focus on justice alongside rights, on access over equality, will disability advocates feel that they have won.
N. Jamiyla Chisholm is a regular contributing writer to Colorlines and Barnard College’s senior associate director of creative content.