Pandemic can't kill Disability Pride

by Suzanne Hanney

“Pandemic Can’t Kill Disability Pride” is the literal theme of Chicago’s 18th Disability Pride Parade, which will go virtual at 11 a.m., July 24, with a series of videos on its website by participating nonprofits. Chicago’s parade, begun in 2004, is the oldest in the United States.

Lia Niederberger, secretary of the parade, said that, post-pandemic, the parade is needed more than ever. “It’s kind of in me both a pride thing and also self-advocacy. There have been underthe-surface stereotypical social norms that, after the pandemic, are more exposed in a certain sense. I’ve personally experienced hardships just in terms of people’s attitudes and social environmental barriers.”

At home during the pandemic, she was able to work at her own, slower pace. But when things started to open back up, “I just started experiencing people’s rudeness and impatience.”

Niederberger, 26, was diagnosed at a very early age with multiple learning disabilities that can be non-apparent and confusing for people who do not know her well. She also has a neurological disability that connects to her learning disabilities and she does advocacy work for other people with non-apparent disabilities, such as autism and ADHD.

What outsiders may not realize, however, is that Niederberger has an IQ that falls within the typical range. A graduate of Hyde Park Day School, Jones College Prep and Lake Forest College, she is self-supporting, helping out with editing and clerical work at a company that does digital healthcare innovation. In terms of assistive technologies, she uses a keyboard for speed and an earpiece to edit out ambient noise in conversations.

Lia Niederberger

“I am a lot more capable than people think,” she said.

The Americans with Disabilities Act (ADA) was signed into law 30 years ago, but was primarily focused on people with physical disabilities, she said, “so it’s really interesting in some ways people with non-physical disabilities are protected and in some ways not. What has happened to me over my personal life, but also during the pandemic, has added a sensibility of personal strength and perseverance that I feel in so many ways has contributed to my pride. It’s more important to have these conversations with people now. The pandemic has added a certain sense of self-awareness to that level of pride.”

Justin Cooper, who is head marshal of the Disability Pride Parade, in charge of making sure it is running smoothly, was 8 years old when the ADA was passed. As a youngster, he didn’t see how the law applied to him, but as an adult he knows it “has done a whole lot for me. It has provided the opportunity to live my life and do the things I want as a disabled person. Doing the work I do is so important to so many people in our community. Being a part of this parade and also doing a lot of actions and protests over the years have shaped things I want to focus on with the disability community: affordable housing, all the things in the past year in terms of racial and social justice, dealing with mental health in people with disabilities – their ability to be out there.”

Cooper was diagnosed at birth with cerebral palsy – damage to the prenatal brain that affects movement -- but at age 30 he learned that was incorrect. What he had was Becker’s Muscular Dystrophy, a genetic condition that slowly diminishes the muscles in his body. He uses a wheelchair at home and outside to enable him to work as a filmmaker, photographer, website and social media expert and advocate.

The importance of showing disability pride, he said, is that “often in society we are shunned or seen as invisible. For us, the parade is always an opportunity for people with disabilities to be showcased, to say we're out here, whether taking part in a parade or activism. You will notice us.”

Entrants so far in this year’s parade include:

• the University of Illinois at Chicago Department of Disability and Human Development,

• Chicago Public Library

• Great Lakes ADA Center

• Inclusive Dance Workshops at Access Living

• HEART, an Inclusive Arts Community in Charleston, S.C., which hosted that city’s own first disability pride celebration on July 10. HEART describes disability pride on its website in terms of “intersectionality.” Disability is merely part of someone’s identity, in addition to gender, race, religion, ethnic background and more. “Pride is the embracing of these facets beyond simply acceptance, but with full inclusion and full-hearted love.”

Bill Thomasson, treasurer of the parade, has been around since its inception in 2004. What’s important to him is that the parade is still happening. “Disability pride is still the same thing it was despite all the pandemic has done to society and individuals; it hasn’t affected disability pride or the fact we are having a parade.”

Bill Thomasson

Thomasson was 63 years old in 2000 when he developed “wet” macular degeneration in his second eye that produced retinal scarring and left him legally blind. Assistive technology – Zoomtext that produced enlargeable yellow words on a black background and special magnifier eyeglasses from Chicago Lighthouse – enabled him to continue working as a freelance science and medical writer. Otherwise, he would have had to stop working and to live on Social Security.

Instead, Thomasson supported himself and “retired” in 2019. He has spent the last two years writing his first novel, which is nearly finished. “Assistive technology allowed me to continue doing what I had been doing before,” he said. “It helped my life to not change.”

Earlier, Thomasson had worked as a railway clerk, spent two years in the peacetime Army, obtained a Ph.D. in biochemistry, married and had a son. He taught at California State University at Long Beach, at California Institute of Technology and at the Chicago College of Osteopathic Medicine.

Thomasson marvels that he has always had disability pride. In the earliest days of his disability, he called for assisted transportation for seniors and people with disabilities in Oak Park, where he lived. Someone told him he sounded “proud” of his disability.

“Disability was simply a new part of my identity,” he said. “It’s part of who I was, and I am proud of who I am.”

Clockwise from top: Lia Niederberger, secretary of the Disability Pride Parade (courtesy photo); Bill Thomasson, treasurer of the Disability Pride Parade (courtesy photo); participants dance at Access Living's Inclusive Dance Workshops (Access Living Facebook); members of the University of Illinois at Chicago Department of Disability and Human Development (UIC photo).

Access Living Inclusive Dance Workshop

University of Illinois at Chicago Department of Disability and Human Development