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Dot Nary: What is disability pride? (Column)

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Disability Pride Month has ended, but we can celebrate disability pride every day of the year.

However, I want recognize Disability Pride Month in July as well as the 32nd anniversary of the July 26, 1990 signing of a major civil rights law, the Americans with Disabilities Act (ADA). As part of this belated recognition, I’d like to discuss the “disability pride.” 

Some people express surprise at the juxtaposition of these two terms: “disability” and “pride,” as they regard them as mutually exclusive. I cannot comment on the meaning of the phrase to all disabled people but want to share my experience of it. 

To me, disability pride means:

Celebrating solidarity with the one in four or five people with disabilities in the U.S. (estimates vary) who cope with discrimination but persist in surviving and, often, thriving in a world that often excludes us; 

Collaborating with other disabled people and our allies to create communities that welcome everyone living with a disability;  

Honoring both our history of breaking down systemic barriers and the disability rights leaders who have led us in creating a more accessible world;

Creating a culture of accessibility, accommodations, and acceptance so that the experience of disability is simply another facet of humanity versus relegation to second class status.

Does this mean that living with a disability is all roses and sunshine? Of course not. As I mentioned above, discrimination and exclusion are common experiences, and, for too many, employment discrimination relegates them to lives of poverty, at worst, or financial insecurity, at best.

Some people’s disabilities result in their living in constant pain; others, such as many with intellectual or developmental disabilities (IDD), are still denied the right to live in the community and make decisions about their lives, with support; and so many people with psychiatric disabilities, mental illness, or brain injuries are denied the services that they need to cope with their condition and achieve quality of life. 

Personally, I just ended a six-month stint of being largely bedbound to heal a pressure ulcer resulting from paralysis due to spina bifida. Along with the critical support of my husband, family, and friends, I was able to get through those six months by recalling the example of disability rights leader Ed Roberts.

Struck by polio as an adolescent, Roberts was paralyzed from the neck down and attended high school by participating by phone from his iron lung. He defied the odds by learning how to “frog breathe” with a portable ventilator and went on to attend the University of California at Berkeley, found a movement to support others with disabilities to live in the community, head the vocational rehabilitation agency for the state of California, and co-found the World Institute on Disability, a think tank on disability policy. I channeled Roberts as I found ways to stay involved and productive while flat on my back. (See a video on Ed’s extraordinary life at this link.)

Years ago, I had to turn down an invitation to attend the Americans with Disabilities Act signing ceremony in the White House Rose Garden as I’d just had surgery on my spinal cord and was unable to travel. Fortunately, I was invited to attend an ADA anniversary event at the White House four years later. That experience, celebrating with thousands of other disability activists from across the nation and seeing disability rights leaders on the dais with President Bill Clinton, was an affirmation of the power of organizing to achieve civil rights. The disability pride at that event was palpable; what an honor it was to experience it.

If you would like to learn more about disability pride and people with disabilities in contemporary society, I recommend a 2021 book: “Demystifying Disability: What to Know, What to Say, and How to be an Ally,” by Emily Ladau. Ladau is a disability rights advocate, writer, and speaker whose book touches on everything from disability history to language about disability in a succinct and readable volume. Locally, the Lawrence Public Library has a copy in its holdings, and the Raven Book Store can order a copy quickly if you don’t find the book there. 

I’m sure that everyone reading this has family members, friends, colleagues, neighbors, or acquaintances with disabilities or chronic conditions. Learning about disability pride and the disability rights movement can prepare you to celebrate Disability Pride month when it rolls around again next July!

— Dot Nary is a disability activist, retired KU researcher, and educator. She grew up on the east coast and still misses the ocean but delights in the beauty of the prairie. She loves living in Lawrence and works to make it a community that is equitable, accessible and welcoming to all. Read more of her columns for The Lawrence Times here.

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