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

by Emily Ladau

More than one billion people around the world are disabled. In fact, we’re the world’s largest minority.

There’s much work yet to be done to change hearts and minds—or, at the very least, to get nondisabled people to stop treating disabled people as a weird cross between precious gems and alien creatures.

listen. It makes sense not to want to live our lives moving from one teachable moment to the next.

Disability: a state of being; a natural part of the human experience.

Imani Barbarin, writer and activist: “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.”

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.

Noor Pervez, an Autistic activist, further explained to me why functioning labels are both inaccurate and harmful. “ ‘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.”

Disability must be considered within an intersectional framework because it cuts across political, social, and cultural narratives and identities.

Disability is the only identity that anyone can suddenly take on at any time.

Disability is deeply personal and means different things to different people. Some people consider disability to be an identity. Some consider it part of who they are, but not an identity. And some who technically have disabilities choose not to identify as disabled at all.

How can we unlearn and disentangle ourselves from the mess of stigma and prejudice toward disabled people—especially disabled people of multiple marginalized identities—and begin to move toward a more inclusive, accepting world? We have a long way to go, but we can and should focus on doing the work of examining our own biases and privileges. This work is necessary for both nondisabled people and disabled people

At the helm of the effort to push for its passage was Justin Dart Jr., an activist known as the father of the ADA. He and his wife, Yoshiko, along with other members of the disability community, went on a nationwide tour to speak with disabled people about the issues that mattered most to them and then used the information shared in these conversations while drafting the ADA.

March 1990 to galvanize legislators into action, among them a group of disabled people who left behind their mobility aids and hauled themselves up the steps of the U.S. Capitol building to prove a point about the barriers they faced every day. Known as the “Capitol Crawl,” it was one of the most iconic moments in the disability rights movement.

While we do have many shared values regarding our rights as human beings, different movements within our community have developed based on the types of discrimination experienced by specific groups of disabled people. These

movements do not always operate in unity; in fact, they are sometimes at odds with each other due to the dynamics of who holds power and privilege in our society. When people with different disabilities who identify with different movements work together, this is considered “cross-disability” work.

not all people with disabilities are the same, and we are engaged in different fights for our rights.

Justice. On her blog Leaving Evidence, Mia Mingus, writer, educator, and community organizer for 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.”

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

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.

We all need to check ourselves to make sure that we’re not holding on to ableist ideas and biases.

common example of this is referring to racist people as mentally ill or calling racism a “sickness” or “disease.” The sentiment that people are trying to express is that racism is BAD, but calling any form of prejudice “a disability” is both dismissive of the issue at hand and an expression of prejudice against disability.

It’s about removing barriers to participation, engagement, and understanding so that all people, regardless of ability, can experience the world around us to the fullest extent possible in ways that work for our minds and bodies. Accessibility is not about special treatment or privileges.

What people are really saying when they make excuses about accessibility is “Disabled people are unwelcome here.”

If you’re feeling uncertain about specific access issues, it’s often helpful to ask how you can best ensure accessibility rather than making assumptions.

Curiosity may be part of human nature, but please remember that you’re not entitled to information just because someone is disabled, especially if you don’t have any level of familiarity with that person. People with disabilities don’t exist to be, as Autistic activist Jim Sinclair phrased it, “self-narrating zoo exhibits.”

Do Keep Your Hands to Yourself

We’re so often taught that there are rules for communicating effectively—firm handshakes, direct eye contact, responsive facial expressions and body language, and so on. However, these so-called skills aren’t always accessible to disabled people, and we shouldn’t expect them as the norm. Really, the best way to communicate with any disabled person is simply to not overthink or try too hard.

presume competence.

The problem with this isn’t misreading what type of disability someone has, but rather using stereotypes about cognitive disabilities as justification for being patronizing. You shouldn’t be condescending to anyone based on prejudiced assumptions. Everyone deserves to be treated with dignity and respect, simply because they are human.

ableist, there are more options for handling

so. Remember, every situation is different and you might not always get it right when it comes to pushing back against ableism. But by being more aware of the impact of your actions and the actions of others, we can all help make the world a better, less ableist place.

Indeed, the history of disabled people in the Western world is in part the history of being on display, of being visually conspicuous while being politically and socially erased. — Rosemarie Garland-Thomson, professor of English and bioethics

GLAAD’s 2019–2020 “Where We Are on TV” report, which looked at 879 series regulars on broadcast programming, only 3.1 percent—just twenty-seven characters—were people with disabilities. This is nowhere close to being representative of the 15 percent of the world’s population who are disabled.