Disability Pride Month: Disability Is Broader Than You Think

Disability Pride Flag: A charcoal grey flag with a diagonal band from the top left to bottom right corner, made up of five parallel stripes in red, gold, pale grey, blue, and green.

Source: Ann Macgill/Public Domain

What do you picture when you think about disability? You probably envision a person in a wheelchair, the literal symbol of disability plastered on parking spots and bathroom doors. This July, Disability Pride Month, consider that disability is broader than you may think.

Disability can be physical or mental, like cerebral palsy or bipolar disorder; common or rare, like chronic back pain or narcolepsy; visible or invisible, like Down syndrome or learning disabilities. In fact, most disabilities are invisible. Despite differences across disabilities, the one experience most people with disabilities share is ableism, or stereotyping, prejudice, or discrimination toward people with disabilities.

I have a rare, non-stereotypical disability. I was born with Moebius syndrome, a condition resulting in facial paralysis. My disability is very visible, but because of its rarity, most people don’t understand the cause or nature of my different appearance. Even though many are quick to judge me as different or even, erroneously, as intellectually disabled, I did not consider myself to be disabled for most of my life. In my early 20s, I worked as a support coordinator for people with disabilities. While I took pride in the job and cared deeply for my clients, I considered myself an ally, not one of them because Moebius syndrome didn’t fit the stereotype of disability, I wanted to skirt the stigma. I look back now and wonder how much more passion and connection I could have brought to my clients if I had identified as disabled.

People like me with non-stereotypical disabilities seem less likely to identify with the term “disability.” A major reason is that the term disability is mired in stigma; we think of it as a “bad word.” To identify with disability in most cultures means to be limited or weak. That’s why a common but misguided compliment is: “I don’t think of you as disabled.” Disability is not a bad thing. It just is. It’s a common form of human variation, like hair color. It can also be a source of community and pride. Many people have been previously taught to use “person-first” language, but nowadays, some prefer “identity-first” language to reflect that disability is a valid identity, not something to be qualified.

Our major disability civil rights legislation, the Americans with Disabilities Act (ADA), defines disability as a physical or mental impairment that substantially limits one or more major life activities, having a history of such, or being regarded as such. At least 25 percent of American adults have a condition that is considered a disability according to the ADA. Disability intersects all other identities, like sexuality, race, and gender. Far fewer consider themselves to be people with disabilities. In a study of people with any kind of health condition, we found that people were unlikely to identify as a person with a disability unless they had experienced ableism and their condition was severe. This is a missed opportunity because my research finds that disability identity and pride is associated with self-esteem and well-being.

Another reason people may not want to identify as disabled is that they don’t want to take away resources from others with a disability. Someone with impairing chronic back pain may feel that identifying as disabled may diminish the legitimacy of an impairment that is perceived as more severe. Again, this is well-meaning, but it serves to perpetuate the idea that disability is rarified and hierarchical.

We can learn a lot about pride from the LGBTQIA+ community; they have earned legal rights and a great deal of public attitude change within a single lifetime. Harvey Milk, the first openly gay elected official in California, implored gay people to “Come out, come out, wherever you are.” Doing so made LGBTQ issues visible. Americans realized that trusted community leaders, friends, and family members among them were gay. Disabled people need to do the same to create a critical mass of visibility.

Like the early gay pride movement, disability pride is a radical shift from the typical way of thinking. Why would someone be proud of their disability? I, for example, am proud because my disability motivated me and gave me the specific expertise and lived experience to devote my career to improving quality of life for disabled people. I am proud because my face makes me distinctive—I have a tiny bit of celebrity status. People remember me after seeing me once, far better than I remember them. I am proud because my disability gives me a unique perspective of the world. I am proud because my disability has connected me to so many interesting and kind people in my disability community.

All groups face the question of “lumping vs splitting.” Many social groups with nuanced differences come together collectively for political organizing, like LGBTQIA+ and Latinos. Although there are meaningful differences in history, art, food, and politics among, for example, Cubans and Mexicans living in America, activists made an intentional effort to count them as one in the U.S. Census to illustrate the size of the group. The fact that Latinos are now counted means that affirmative action, vaccine distribution plans, etc., use the population base rate as a lodestar, meaning strength in numbers has afforded them rights.

This Disability Pride Month, let's form a critical mass of disability representation. Disabled folks, especially those with invisible and non-stereotypic disabilities, come out and come together with pride. Our rights depend on it.

A version of this post also appears in the Harvard Social Impact Review.