The Americans with Disabilities Act (ADA) is a landmark civil rights law from 1990 that prohibits discrimination against people based on disability. But discrimination against people with disabilities continues, and that discrimination is often referred to as ableism. Here's what you should know about ableism, including why it exists, how it affects health and society, and how to help end it.
What Is Ableism? Here’s What You Need to Know About the Form of Discrimination
What is ableism?
Merriam-Webster defines ableism as "discrimination or prejudice against individuals with disabilities." This discrimination—which can be based on physical or mental abilities—happens in digital and in-person spaces and can occur on an individual or a systematic level. Designing a building or website without accessibility in mind, making fun of people with disabilities, not making reasonable accommodations so disabled people can access public spaces, and assuming that people with disabilities want or need to be "fixed" are a few examples of ableism.
When it comes to systemic ableism, there's an assumption that everybody does things the same way, and that assumption is institutionalized through policies and societal values, Kathy Martinez, president and CEO of Disability Rights Advocates, tells Health. "When that happens, a large swath of the population is at a disadvantage."
Regardless of what level ableism is happening on, it starts with the attitude "that typical abilities are superior" and "that people with disabilities are less than," according to Martinez.
Who does ableism affect?
Ableism most directly affects those who are disabled. But it will also have an impact of almost everyone at some point. "For better or worse, the disability community is a community that can be joined at any time—even if you join the disability community on a temporary basis, like if you break your leg or if you're injured and you lose function," Martinez says.
Martinez points out that as the US population ages and lives longer, the disability community will swell, since older people are more likely to need physical accommodations in public spaces. Martinez says that recognizing and addressing ableist designs and attitudes is "a societal imperative."
Ableism also affects the labor force. As of July 2021, the unemployment rate for people with disabilities is 12.1%—compared to 5.4% for people without disabilities. If just 1% more of those with disabilities were welcomed into the US labor force, the country's gross domestic product could increase up to $25 billion, according to a report from the American Association of People with Disabilities (AAPD).
"If you hire someone with a disability or you spend time with people with a disability, you get a different perspective, you learn that there's more than one way to do things," Martinez says. "When we're connected to something, the stigma goes away because you see things from somebody else's point of view, you understand how they survive in the world, and I think that we realize that there's this entire population out there that's systematically been left out."
Where does ableism exist?
"Ableism has unfortunately been baked into the societal values," Martinez says. Accessibility has improved over the decades—more buildings have ramps now, in large part due to the ADA—but certainly areas still need further change.
According to Martinez, websites are not built with people who have different communication styles. Martinez, who is blind, says she had a "terrible time" making her COVID-19 vaccination appointment because the website wasn't accessible.
"I think, as a blind person, my fervor has been with the health apps. They're not designed with accessibility in mind, so we have to struggle in a way to find a workaround to get the same task done that a non-disabled person does," Martinez says. "And people don't even think about it when they're creating websites; they assume that everybody's able-bodied and right-handed, and so that's how many things are designed."
Ableism in the doctor’s office
Many doctors' offices lack equipment, such as a wheelchair-accessible scale or a height-adjustable exam table, to accommodate those with a physical disability. Many also don't have ways of communicating to those who are deaf, hard of hearing, or who have an intellectual or developmental disability. Few offer large-font print materials, like pamphlets and prescriptions, for people who are blind or have low vision.
This lack of access might be part of the reason why only 56% of US doctors say they strongly welcome people with disabilities into their offices. That was just one of the findings that Lisa I. Iezzoni, MD, a professor of medicine at Harvard Medical School who has spent decades researching health care disparities among people with disabilities, uncovered through a recent survey of more than 700 practicing physicians from seven specialties.
The survey also revealed that only 41% of doctors feel very confident that they can provide the same quality care to their patients with disabilities as they provide to other patients, and that 82% of doctors think that people with "significant disability" have a worse quality of life than other people. "We knew that doctors have bad attitudes about people with disabilities, we know that they stigmatize, we just didn't know the rate at which they did," Dr. Iezzoni tells Health.
How does ableism affect health outcomes?
Ableism can lead to diagnostic overshadowing. That's when somebody with a disability visits a doctor with a concern unrelated to their disability, but all the doctor wants to focus on is their disability, potentially missing a diagnosis. "This notion [of diagnostic overshadowing] started with intellectual disability and mental health conditions," Dr. Iezzoni says. "Doctors would say, 'It's all in your head,' about any complaint that you have because they wouldn't take seriously that a person with a disability might be able to sense things with their bodies that need to be evaluated."
Ableism might also lead to a lack of necessary testing. "Physicians may think that women with disability are not sexually active, and so they don't need to get a pap test because they don't have a risk of contracting human papillomavirus," Dr. Iezzoni explains.
The COVID-19 pandemic raised concerns about the way disabled people who contracted COVID would be treated by hospitals and health care workers. Dr. Iezzoni points to the case of Michael Hickson, a 46-year-old with COVID-19 who died last year after the hospital ended all treatment for him, including nutrition and hydration. While the hospital says it stopped COVID treatment because his prognosis was grim, Hickson's wife believes that he was "denied potentially lifesaving treatment because doctors at the hospital made a decision based on their biases that, because of his disabilities, Hickson had a low quality of life," NPR reported.
It's been a fear of disability rights advocates since the beginning of the pandemic. In March 2020, Office for Civil Rights Director Roger Severino told NPR that he's "concerned that stereotypes about what life is like living with a disability can be improperly used to exclude people from needed care."
RELATED: Your Patient Rights: 10 Accommodations You Can Request Before and During a Medical Visit
How to end to ableism in health care
Extra training, both in medical school and after, is key, Dr. Iezzoni says. This can help doctors feel confident that they can provide the same quality medical care to all patients, regardless of disability status. She also suggests that doctors evaluate their equipment to ensure that they can effectively treat people with disabilities and make them feel more welcomed—something the law requires them to do anyway.
Until ableism comes to an end in the health care setting, there are steps that people with disabilities can take to get the care they need. The first is to be an "empowered consumer," Dr. Iezzoni says. "Everybody needs to know what questions to ask their physician, needs to be tenacious, needs to follow up if they aren't getting the right answers, needs to be willing to change doctors if they feel like they're not getting the care that they need from the doctors that they have at the time."
Another reality: People with disabilities often need more time than the typical 15-minute block that a physician's office sets aside for each patient. Get the time you need by asking to have a double-block appointment, recommends Dr. Iezzoni. Or, request to be the first or last appointment of the day, and maybe your doctor can come in a few minutes earlier or leave a little later.
RELATED: A Patient Advocate Can Help You Get the Medical Care You Need—Here's How to Find One
How can we put an end to ableism everywhere?
It starts with changing attitudes. "What changes people's minds is their connection to someone with a disability," Martinez says. "Weaving accessibility into programs, services, our culture will allow people with disabilities to participate at a higher level."
Even if you don't know someone with a disability, volunteer opportunities and disability rights organizations can help you build that connection. Some research even shows that getting to know people with disabilities can help doctors combat their own ableism, according to Dr. Iezzoni.
"I think the more we mix it up with people with disabilities, the less fear people have about and stigma about disabilities; we fear less what we know best," Martinez says. "So if disability is just part of our day, it becomes less [stigmatized]… But the way to combat ableism is to realize that disability is a natural part of the human condition and that designing a world and expanding our culture to include people with disabilities benefits everyone."
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