Incapacity Satisfaction Month: Incapacity Is Broader Than You Suppose

Disability Pride Flag. A black flag with blue, yellow, white, red, and green flashes on it.

Source: Ann Magill / Public Domain

What do you imagine when you think of disability? You are likely envisioning a person in a wheelchair, the literal symbol of disability on parking lots and bathroom doors. This July, Disability Pride Month, remember that disability goes beyond what you might think.

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

I have a rare, non-stereotypical disability. I was born with Moebius Syndrome, a condition that causes facial paralysis. My disability is very visible, but because of its rarity, most people do not understand the cause or essence of my different appearances. Even if many people quickly judge me as different or even mistakenly as mentally handicapped, I have not considered myself handicapped for most of my life. When I was in my early twenties, I worked as a support coordinator for people with disabilities. Although I took pride in the job and took great care of my clients, I saw myself as an ally rather than one of them because it wasn’t the disability stereotype, I wanted to get around the stigma. I look back now and wonder how much more passion and connection I could have brought my clients if I had identified myself as disabled.

People like me with non-stereotypical disabilities seem less likely to identify with the term “disability”. One of the main reasons for this is that there is a stigma attached to the term disability; we consider it a “bad word”. Identifying with disability in most cultures means being limited or weak. So a common but misguided compliment is, “I don’t think you’re disabled.” Disability isn’t a bad thing. It’s easy. It’s a common form of human variation, like hair color. It can also be a source of community and pride. Many people were previously taught to use language “first”, but now some prefer “identity-oriented” language to show that disability is a valid identity, not something that needs to be qualified.

Our primary civil rights law on disabilities, the Americans with Disabilities Act (ADA), defines disability as a physical or mental impairment that significantly restricts, has in the past, or is considered to be one or more important life activities. At least 25 percent of American adults have a condition that the ADA classifies as a disability. Disability overlaps with all other identities such as sexuality, race, and gender. Even fewer see themselves as people with disabilities. In a study of people with some type of health condition, we found that people are unlikely to identify as a person with a disability unless they had ableism and their condition was severe. This is a lost opportunity because my research shows that having a disability and pride increases self-esteem and well-being.

Another reason people don’t want to be labeled “disabled” is because they don’t want to take away resources from others with a disability. Someone with debilitating chronic back pain may feel that identifying as disabled can diminish the legitimacy of what is felt to be a more severe impairment. Again, this is well-intentioned, but it serves to maintain the notion that disability is rare and hierarchical.

We can learn a lot about pride from the LGBTQIA + community; they have acquired legal rights and a great change in public attitudes in a single lifetime. Harvey Milk, the first openly gay elected officer in California, implored the gays, “Come out, come out wherever you are.” This made LGBTQ problems visible. Americans realized that trusted community leaders, friends, and family members among them were gay. People with disabilities need to do the same to create a critical mass of visibility.

Like the early gay pride movement, disabled pride is a radical departure from the typical mindset. Why should someone be proud of their disability? I am proud, for example, because my disability motivates me and has given me the specific know-how and lived experience to dedicate myself professionally to improving the quality of life of disabled people. I’m proud because my face makes me distinctive – I have a little bit of celebrity status. After seeing me once, people remember me much better than I remember them. I am proud because my disability gives me a unique perspective on the world. I am proud because my disability has connected me to so many interesting and friendly people in my disabled community.

All social groups are faced with the question “Lump vs. Many social groups with nuanced differences come together to organize politically, such as LGBTQIA + and Latinos. While there are significant differences in history, art, food, and politics between Cubans and Mexicans living in America, for example, activists purposely sought to count them as one in the U.S. census to illustrate the size of the group. The fact that Latinos are now being counted means positive action, vaccine distribution plans, etc. are using the base rate of the population as a guiding star, meaning that the strength of the number has given them rights.

In this Disability Pride Month, let’s build a critical mass of disability advocacy groups. People with disabilities, especially those with invisible and non-stereotypical 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.

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