Andrew Pulrang
Forbes Magazine, Oct. 25, 2020
If you read more than one or two articles on disability issues, or talk to just about any disability rights activist, you will run across the word “ableism.” The word does a lot of work for disability culture. It carries the weight of the worst of what plagues disabled people the most, but can be so hard to express.
But for that reason, “ableism” can also seem like an overworked term. It often adds as much confusion and dissension to disability discourse as it does clarity and purpose. While it gives voice and substance to very real beliefs and experiences, the word “ableism” can also feel like a rhetorical weapon meant to discredit people at a stroke for an offensiveness that many people simply don’t see or agree exists.
But as any disabled person will tell you, ableism, or something like it absolutely exists. Having a word to talk about it is essential to understanding it and fighting it.
What, exactly is “ableism,” or what is it supposed to be? We may as well start with “textbook” definitions of “ableism” …
Urban Dictionary: “Ableism is the discrimination or prejudice against people who have disabilities. Ableism can take the form of ideas and assumptions, stereotypes, attitudes and practices, physical barriers in the environment, or larger scale oppression. It is oftentimes unintentional and most people are completely unaware of the impact of their words or actions.”
These definitions are fine as far as they go. But it’s always useful to try coming up with our own definitions, based on real-life experiences of disability. For example, ableism is:
Any statement or behavior directed at a disabled person that denigrates or assumes a lesser status for the person because of their disability.
Or …
Social habits, practices, regulations, laws, and institutions that operate under the assumption that disabled people are inherently less capable overall, less valuable in society, and / or should have less personal autonomy than is ordinarily granted to people of the same age.
These two definitions point towards an important dual nature for ableism. In one sense it is about individual behavior, but it is also about social structures and institutions. It’s important to explore the essential components both.
Personal ableism:
1. Feeling instinctively uncomfortable around disabled people, or anyone who seems “strange” in ways that might be connected to a disability of some kind. This manifests in hundreds of ways, and can include:
- “¢ Being nervous, clumsy, and awkward around people in wheelchairs.
- “¢ Being viscerally disgusted by people whose bodies appear to be very different or “deformed.”
- “¢ Avoiding talking to disabled people in order to avoid some kind of feared embarrassment.
2. Holding stereotypical views about disabled people in general, or about certain sub-groups of disabled people. For example:
- “¢ Assuming that disabled people’s personalities fit into just a few main categories, like sad and pitiful, cheerful and innocent, or bitter and complaining.
- “¢ Associating specific stereotypes with particular conditions. For example, that people with Down Syndrome are happy, friendly, and naive, mentally ill people are unpredictable and dangerous, or autistic people are cold, tactless, and unknowable.
- “¢ Placing different disabilities in a hierarchy of “severity” or relative value. A prime example of this is the widely held belief, even among disabled people, that physical disability isn’t so bad because at least there’s “nothing wrong with your mind.”
3. Resenting disabled people for advantages or privileges you think they have as a group. This is one of the main flip sides of condescension and sentimentality towards disabled people. It’s driven by a combination of petty everyday resentments and false, dark, and quasi-political convictions, such as:
- “¢ Disabled people get good parking spaces, discounts, and all kinds of other little unearned favors.
- “¢ Unlike other “minorities,” everyone likes and supports disabled people. They aren’t oppressed, they are coddled.
- “¢ Disabled people don’t have to work and get government benefits for life.
It’s interesting to note that there seem to be two main schools of ableist belief. One is that disabled people are unfortunate but innocent victims of circumstance who should be loved, cared for, and shielded from harm. The other is that disabled people are naturally inferior, disagreeable, and at the same time beneficiaries of unfair and unjustified generosity and social protection. Neither belief is true, and both beliefs are limiting and poison relationships between disabled and non-disabled people, and sometimes between disabled people themselves.
At the same time, we can’t lay all of this on individual beliefs and behaviors. Those beliefs are heavily influenced by longstanding social practices and institutions. And those practices and institutions take much longer to change than individual attitudes. Long after people’s beliefs about disability improve, laws, regulations, and institutions keep ableism alive and do enormous harm to disabled people.
Systemic ableism:
Any time we talk about “systemic” forces, we run the risk of wandering off into so much abstraction that we lose connection with everyday reality. But institutional ableism really isn’t that mysterious. The components of it are easy to see, once we know what we are looking for.
- 1. Laws and regulations that restrict the freedom and equality of people with disabilities.
- “¢ Before laws like Section 504 of the Rehabilitation Act, the Individuals with Disabilities Education Act, and the Americans with Disabilities Act, it was perfectly legal to simply exclude disabled people from government services and employment, going to public schools, and even enter businesses and buy goods and services. And long after those laws removed legal barriers, discriminatory practices continue live on.
- “¢ There are current guardianship laws that are meant to protect people with certain disabilities, but which can easily be misused or overused to restrict freedom and autonomy far more than may be strictly necessary. For example, disabled adults placed under guardianship are often deprived of the right to vote without any real justification, sometimes without their knowledge or even their guardians realizing it.
- “¢ Bits and pieces of otherwise helpful programs often survive multiple efforts at reform, and still impose pointless restrictions and counterproductive inequalities on disabled people. A classic example is Social Security Disability and SSI rules that penalize disabled people for working or getting married.
2. Social policy that seeks to “care for” disabled people through intensive supervision, protection, and isolation from everyday society.
- “¢ Large institutions, smaller group homes, assisted living, and nursing homes are far less dominant than they used to be, but they are still too often the default option offered to disabled people, or imposed on them, when they need everyday help. And they are all still based on a model of segregation and control, where unrelated disabled people live together under one roof they do not own, not by mutual choice, and closely supervised by non-disabled people.
- “¢ Not that many decades ago, physically separating disabled people from society, including from their families, was not seen as a sad side effect, but as an agreed upon social goal to protect disabled people society, and protect society from disabled people.
- “¢ Despite significant expansion of individually-based community supports like home care, many of the structures of institutionalization keep going by force of habit, bureaucratic inertia, and the persistence of outdated ideas about the safety of institutions vs. independent living ” and of course because “caring for” disabled people, if done in particular ways, can still be very profitable.
3. Policies and practices that seek to reduce or eliminate disability from society, not just as a benefit to any individual disabled person, but as a perceived benefit to society as a whole.
- “¢ Dozens of organizations still strive for identification, treatments, and cures for disability, not just to make disabled people’s lives better, but to achieve some kind of betterment of society.
- “¢ Sometimes the hoped-for benefit is essentially practical, like saving money on help and support of disabled people. But often it is still a more abstract improvement people seek ” a general sense that disability is a blight on society, so fewer disabled people would be good for society.
- “¢ Much of this traces back to the popularity of eugenics, the idea that humanity as a whole, or a nation specifically, can and should be improved or “purified” by controlling who is allowed to reproduce, and, in extreme cases, who is allowed to live. “Eugenics” is a loaded word because of its connection with Nazi Germany. But we shouldn’t forget how universally accepted it was less than 100 years ago, including here in the United States.
Some even argue that entire economic systems, like capitalism, other prejudices, like racism, and conventional values like paternalism and conformity both generate and depend on deep-seeded and often unconscious ableism. Far from being a new or niche social phenomenon, ableism may be a key component of oppression and injustice themselves.
So what does all of this suggest about how we should understand ableism? Here are a few suggestions:
- 1. Regardless of the situation where you hear the term, don’t take it as a personal insult or condemnation. Ableism is much more important as a set of social structures than a set of personal behaviors or attitudes. Also, the very fact that ableism is so pervasive in society means that it’s hardly surprising that many if not most of us probably harbor ableist beliefs and act in ableist ways now and then.
- 2. Don’t argue with a disabled person over the technical semantics or validity of the word “ableism.” “New” words and concepts seem to make some people especially upset and suspicious. But coining and using a term like “ableism” is simply a way for us to talk about a real set of experiences and feelings most disabled people face at some time or another. It’s liberating to be able to give them a name, a way to talk about them.
- 3. Remember that disabled people can be ableist too, to each other, and to themselves. Very few of us grow up within a disability culture. Whether from childhood, accident or illness in adulthood, or aging, we learn about disability mostly from non-disabled parents, and / or non-disabled doctors, therapists, and teachers. So most disabled people’s first exposure to ideas about disability are heavily ableist. Though we may not always realize it, a great many of us who are disabled accept the idea that we are inferior, at least in regard to our disabilities. It takes most of us a lot of time to meet other disabled people, come to realize the experiences we all share, and identify the external barriers we all face.
Ableism is bad. It hurts people. But it shouldn’t shock us. We should be able to identify it and work against it with urgency, but without undue shame or anguish. The word “ableism” itself may sound artificial to some, but what it represents is as old as human civilization, and as immediate as every awkward encounter disabled people face every day.