Demystifying Disability: What to Know, What to Say, and How to Be an Ally

by Emily Ladau

You might think that our both having LS is a tragedy, but we don’t.

If the disability community wants a world that’s accessible to us, then we must make ideas and experiences of disability accessible to the world.

So it’s important to remember that if you’ve met one disabled person, you’ve met one disabled person. And if you have a disability, then the only disability experience you’re an expert on is your own.

After years of existing in this body of mine, my definition is Disability: a state of being; a natural part of the human experience.

Cara Liebowitz, writer and activist: “Disability, to me, is a social identity, but it’s also about having functional limitations.”

“Disability is a holistic experience, so it must have a holistic definition. Disability is not just a physical diagnosis, but a lived experience in which parameters and barriers are placed upon our lives because of that diagnosis.”

Thus, deafness—and disability more broadly—is an oppression of difference rather than an impairment.”

Instead, I was tired of mostly nondisabled people telling me that PFL was right and IFL was wrong. I was tired of calling myself “disabled” and being told “oh, you shouldn’t talk about yourself like that,” or “I don’t even think of you as disabled.”

hearing such things makes me feel as if a whole facet of my existence is simply being erased.

These are not qualities or conditions that I have. They are part of who I am. Being Autistic does not subtract from my value, worth, and dignity as a person. Being Autistic does not diminish the other aspects of my identity. Being Autistic is not giving up on myself or limiting myself or surrendering to some debilitating monster or putting myself down. Being Autistic is like being anything else.

Please do not ever refer to someone by their mobility equipment. Not only is this rude but to equate a person to an object completely undermines one’s humanity.

the terms “confined to a wheelchair” and “wheelchair-bound.” I can’t tell you how many articles I read that have otherwise good points about disability but then refer to wheelchair users as confined to their mobility equipment. I’m not confined or bound to my wheelchair. It’s literally designed to enable me to move.

There’s no need to dwell on it by apologizing multiple times or to make it about you by going on about how embarrassed you are.

So whenever possible, ask people to share their preferred terminology. It’s as easy as saying, “Would it be okay to say that you’re disabled, or is there another term you prefer?” But if the opportunity to ask doesn’t come up and you’re unsure about a person’s preference, go ahead and say “disabled.” It’s perfectly okay and not a bad word, I promise!

‘Low functioning’ is used to deny agency to disabled people who have high support needs,” he states, “while ‘high functioning’ is used to deny resources to people who can mask their disability well. Any person’s support needs can shift from year to year, or even day to day, making ‘functioning’ a flawed concept.”

Instead, it’s better to speak openly and directly about needs, abilities, and disabilities.

Some of the most common examples to look out for include crazy, dumb, idiot, imbecile, insane, lame, moron, slow, and stupid. Words such as these were historically used to refer to people with disabilities, often as official diagnoses for people who were housed in institutions. Practice removing these terms from your vocabulary. Not only are they outdated; they’re hurtful and offensive. And there are plenty of alternatives.

It’s easy to fall back on using disability as a metaphor, but it’s just as easy to avoid.

Disability is not an insult. I cannot stress this enough. Do not use disability as an insult.

When we use disabilities in this negative way, we’re perpetuating harmful stereotypes.

And when we say “intersectionality,” we have to recognize that it’s about centering the lived experiences of marginalized people whose multiple identities overlap.

But keep in mind that disabled people aren’t exempt from experiencing privilege simply because they’re disabled. As a white disabled person, I am afforded privilege that people of color (both disabled and nondisabled) are not. And because my disability doesn’t impact my ability to communicate verbally, I experience privilege not shared with people who don’t communicate verbally. Privilege and lack thereof take many forms, and we can’t talk about disability without constantly acknowledging that humans are complex, with overlapping, intersecting identities and opportunities that influence how we perceive the world and how the world perceives us.

This work is necessary for both nondisabled people and disabled people because, as doctoral student D’Arcee Neal rightly pointed out to me, “being part of one marginalized community doesn’t absolve you from understanding discrimination toward marginalized people whose experiences are different than your own.”

Neal does experience difficulties, but not because of who he is. They’re because of who society determines him to be, based on prejudice.

Bias and privilege are deeply linked to our understanding of identity—our own and others’—and we must keep this front and center in our minds as we dig deeper into ideas and concepts connected to disability.

We need to reframe these fears and turn them into an understanding of disability as part of the human experience.

The medical model, also known as the “individual model,” focuses on disability as a person-based issue. It’s about defining disability as a diagnosis or impairment that has an effect on an individual.

That said, there are some big downfalls to the medical model; namely, the negative attitudes toward disability that it frequently perpetuates and the idea that disability is a problem needing to be fixed or cured.

The social model emerged as a response to the incomplete perspective of the medical model. According to the social model, people are disabled not by medical conditions but by environments, attitudes, and systems that create barriers. As an example, through the lens of the social model, I can attribute my status as disabled to an environment that isn’t wheelchair accessible, rather than to my medical diagnosis.

some of these models—specifically the charity, economic, and religious—are based on perceptions of disability that are quite inaccurate and harmful. Each of these models is helpful in explaining the ways that our society perceives and understands disability; but ultimately, disability is a complex human experience that can’t be placed squarely into any one category.

This dangerous practice is known as eugenics—a set of beliefs and practices intended to prevent people with “undesirable” traits from reproducing for the supposed betterment of humankind. And who got to decide who qualified as “desirable”? Nondisabled, white, straight, cisgender people.

more than half of the United States followed suit.

The matter was escalated all the way to the U.S. Supreme Court, which ruled that forced sterilization was not a violation of the Constitution. In his haunting opinion on the case, Justice Oliver Wendell Holmes Jr. declared, “Three generations of imbeciles are enough.”

Though supposedly well-intentioned, as of this writing, the law is still in place, which means that wage discrimination on the basis of disability is still legal.

Although the IDEA has led to significant progress in education, it is not nearly enough, and despite having been in effect for decades, the implementation of the law has yet to be fully funded by the government (although the Biden/Harris administration has promised to change this).

Roberts asked, “What’s a life living in an institution or a nursing home? Not much of a life. Yet we spend billions and billions of dollars on these. What we have to do is break that money loose from very strong special interests and move it into the community and deal with quality-of-life issues. We do not want to be segregated.” And that’s exactly what the Independent Living (IL) movement strives for: cross-disability access to life in the community.

Disability Justice is a framework that both builds on and diverges from disability rights, centering marginalized disabled people who are so often left behind in broader conversations about disability rights.

And indeed, recognizing that not all disability experiences are the same is key to Disability Justice.

Disability Justice, explains that it is about “moving away from an equality-based model of sameness and ‘we are just like you’ to a model of disability that embraces difference, confronts privilege, and challenges what is considered ‘normal’ on every front.”

Neurodiversity is a concept that rejects these morality- and value-based judgments of the human mind, instead embracing the naturally occurring fact that no one’s brain is exactly like anyone else’s brain. Within the neurodiversity movement, people with disability-related brain differences are referred to as “neurodivergent,” while people who don’t have such differences are referred to as “neurotypical.”

Sinclair lamented, “The tragedy is not that we’re here, but that your world has no place for us to be.”

Staying alive is a lot of work for a disabled person in an ableist society. — Alice Wong, editor of Disability Visibility: First-Person Stories from the Twenty-First Century

“Ableism is attitudes, actions, and circumstances that devalue people because they are disabled or perceived as having a disability.”

To most of society, ableist beliefs and behavior don’t raise any red flags because they’re woven into the fabric of everyday life, simply accepted as the norm. For disabled people, though, ableism is always there—a part of our lives that never disappears, manifesting in endless forms ranging from broad, systemic discrimination to individual interactions.

Ableist assumptions lead to systemic ableism, such as accessibility, which (whether intentional or not) leads to further discrimination.

People with disabilities aren’t inherently disadvantaged; rather, we’re put at a disadvantage by practices such as this.

But it’s pretty frustrating that disabled people have to fight so hard for something as basic as being able to order pizza.

For that matter, jokes that rely on making fun of people with disabilities shouldn’t be considered funny by anyone

When ableism comes at you from so many directions, it can be challenging to avoid internalizing it. I can’t recall a time when I haven’t struggled with this in some way. My cheeks have burned red with embarrassment as I asked for help with certain physical tasks. I’ve apologized when plans needed to change because the place someone suggested has stairs. I’ve lost sleep over fears that my disability makes me undeserving of being romantically loved. When such thoughts cross my mind, I have to remind myself that my disability does not make me burdensome or embarrassing. If anyone thinks of me that way, that’s their problem. If I can’t go somewhere because of a staircase, that’s not my fault. If I need assistance, that’s okay.

Too many disabled people have been led to believe that our very lives are not worth living. And if there’s one thing—just one—that you take away from reading this book, let it be this: That line of thinking is unequivocally untrue. Disabled lives are worth living.