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Nothing about us without us Disability rights activist and author share history with rehabilitation services students

A woman stood in the back of a busy train in Boston, teeming with excitement. As the train reaches her stop, a rear door opens and a whir of machinery prompts a round of frustrated groans from the other passengers. Denise Karuth wheeled her chair onto the lift and said, “I’m sorry it took so long but I’ve been waiting 22 years to take this train and I’m not goin’ to let you ruin it for me!”

Karuth has been fighting for disability rights for most of her lifetime. As a political organizer with vision impairments who is in a wheelchair, she works to help empower and care for the disability community. To UTRGV Graduate Teaching Assistant Deborah Ashley’s Disability Policy and Advocacy class, she is a legend as well.

Karuth and Fred Pelka, her partner and the author of “What We Have Done: An Oral History of the Disability Rights Movement,” spoke with Ashley’s class on last Thursday via video conference.

In his discourse, Pelka touched on the importance of letting marginalized people tell their own stories. He doesn’t see himself as a voice for people with disabilities, but as a means to amplify those voices.

Karuth is one of the voices featured in this book. As a political organizer, she helped spearhead the movement for accessible public transportation and this encounter was only one of many that she and countless other disabled people face on a daily basis. She addressed the stigma around disability and how it affects her community.

“All things we take for granted now came out of struggle,” Karuth said. “People seem to imagine that people with disabilities live sheltered lives but the reality is that people have to fight to simply get the things that they need. That’s our reality.”

Pelka defines ableism as a common attitude toward people with disabilities that needs to be confronted. He used the character Lt. Dan, from the film “Forrest Gump,” as an example for the ableist perception, how it has changed and how it is changing.

“When you think about it, the end of ‘Forrest Gump,’ where you see the veteran who lost his leg and he’s suddenly happy and hobbling along on a prosthetic at the wedding, that is to make us more comfortable with his disability,” Pelka said. “They are trying to make him seem normal, like he has both legs. It’s the idea that, ‘We won’t accommodate for you,’ but ‘You have to accommodate for us’. So much of this attitude focused on making people look normal rather than enabling them to get on with their lives and that persists today.”

Ashley, who arranged the discussion after sending Pelka a shot-in-the-dark message on LinkedIn, thought it would be a rare experience to give the rehabilitation services students the chance to exchange thoughts with the author of their textbook.

“We’ve been super excited about this,” Ashley said. “Hopefully, they will be encouraged to be advocates for themselves and to help people with disabilities be advocates for themselves. I want them to go forward and share the life and challenges that many face, and to make it known that these are just challenges.”

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