personal stories

Willie Levi, 73, Dies; He Escaped a Life of Servitude

 

A man wearing a red baseball cap looks into the camera.
Willie Levi in 2013. Intellectually disabled, he spent years working at a turkey-processing plant for $65 a month but found justice in a successful lawsuit. Photo: Nicole Bengiveno, The New York Times

By Dan Barry, The New York Times

Willie Levi died at the age of 73 on April 23 after contracting the novel coronavirus.

Levi, who lived with an intellectual disability, was part of a successful Equal Employment Opportunity Commission lawsuit that fought for proper pay and working conditions for people with disabilities.

Levi was sent from his hometown of Orange, Texas to Iowa, where he worked alongside other men at a turkey-processing plant for decades. According to The New York Times, the men worked “in virtual servitude” for Henry’s Turkey Service.

Although Levi never made it back to Orange while he was alive, after his passing he was set to be buried in the same historic African-American cemetery that holds the remains of his mother, according to The New York Times.

Read the full article here: https://www.nytimes.com/2020/04/30/us/willie-levi-73-dies-he-escaped-a-life-of-servitude.html?referringSource=articleShare

State Policies May Send People with Disabilities to the Back of the Line for Ventilators

Vestavia Hills, Alabama, resident Matthew Foster, who has Down syndrome, holds a sign reading: "I am ventilator worthy! I want the right to live"
Vestavia Hills, Alabama, resident Matthew Foster, who has Down syndrome, worries he could be in the back of the line for a ventilator if he contracts severe COVID-19. Half of states have policies with the type of provisions that advocates say discriminate against people with disabilities. (Photo Courtesy of Susan Ellis)

By Liz Essley Whyte, Center for Public Integrity/The Daily Beast

An analysis by the Center for Public Integrity reveals that policies in at least 25 U.S. states have provisions that could de-prioritize health care for people with disabilities if cases of COVID-19 continue to ravage hospitals’ supplies.

Disability advocates have filed formal complaints in several states for their policies on who should get ventilators if hospitals run out. These policies take into account patients’ expected lifespan; need for resources, such as home oxygen; or specific diagnoses, such as dementia. Some policies even permit hospitals to take ventilators away from patients who use them as breathing aids in everyday life, and give the ventilators to other patients.

Twenty-five states have similar provisions in their rationing policies — and many other states either don’t have policies, or aren’t releasing them.

“There is a long history of people with disabilities being devalued by the medical system. That’s why we have civil rights laws,” said disability-rights activist Ari Ne’eman. “We don’t have an exception in our country’s civil rights laws for clinical judgment. We don’t take it on trust.”

Read the full article here: https://publicintegrity.org/health/coronavirus-and-inequality/state-policies-may-send-people-with-disabilities-to-the-back-of-the-line-for-ventilators/

NCDJ Board Member Becky Curran Kekula Discusses Facing the Fear of Inclusivity

NCDJ board member Becky Curran Kekula speaks with a TMJ-4 reporter on “The Morning Blend” about inclusive ways to discuss disability.

By “The Morning Blend” show on TMJ-4 Milwaukee

NCDJ board member Becky Curran Kekula appeared on this morning talk show to discuss tips for treating people with disabilities fairly and respectfully. Part of the discussion focused on the fact that since 70% of disabilities are invisible, many people are nervous to either admit they have a disability, or to speak about someone who may have a disability that isn’t immediately apparent.

Also featured are some of Becky’s favorite tips for working remotely — a particularly relevant topic in the midst of the coronavirus pandemic.

Watch the full segment here: https://www.tmj4.com/shows/the-morning-blend/facing-the-fear-of-inclusivity

These women are making Charlotteans with disabilities a priority

Monique Stamps and Judith Brown are using their personal experiences to advocate for Charlotteans with disabilities.

Judith Brown is executive director of Project 70Forward, a nonprofit working to create an inclusive community for Charlotteans with disabilities. Photo courtesy of Judith Brown
By Bryant Carter, Q City Metro

Among Charlotte’s diverse population, those who are disabled rarely get the attention they deserve. Monique Stamps and Judith Brown want to use their personal experiences to help change that, especially for people of color with disabilities.

At 16, Stamps was involved in a car crash in Rock Hill resulting in injuries that left her reliant on a wheelchair. Following the accident, she found it difficult growing up with a disability. Doctors warned her against having children, friends and family suggested she collect disability insurance instead of going to college, and the agency that was supposed to be a resource wasn’t very helpful.

Under section 14(c) of the U.S. Fair Labor Standards Act, companies can pay disabled workers below the federal minimum wage. When the local Vocational Rehabilitation office placed Stamps in a job sorting plastic spoons, she fought back.

“They told me I was being arrogant versus trying to get an education and live a full life,” she said. “If that made me arrogant, then so be it.”

In 2000, Stamps earned her bachelor’s degree in social work from Winthrop University. Four years later, she relocated to Charlotte to work at an independent-living facility mentoring others with disabilities. That was her first meeting with Judith Brown, who had come to the center for assistance.

Motivation to change the system

Brown lived in New York City and Baltimore before moving to Charlotte in 2010. She suffered hearing, vision and spinal cord injuries in her late 30s that prevented her from working. Brown also discovered that her two sons were autistic. Doctors misdiagnosed her family, she said, because their symptoms weren’t common in African Americans.

The two women immediately bonded as Black women with disabilities who experienced unfair treatment by social services.

Read the full article here: https://qcitymetro.com/2019/12/20/these-women-are-making-charlotteans-with-disabilities-a-priority/

My Fight With a Sidewalk Robot

A life-threatening encounter with AI technology convinced me that the needs of people with disabilities need to be engineered into our autonomous future.

A mid-sized robot on a sidewalk
A Starship Technologies commercial delivery robot navigates a sidewalk. Wolfgang Rattay/Reuters
PERSPECTIVE

By EMILY ACKERMAN

One afternoon last month, as I was crossing a busy four-lane street that runs through the University of Pittsburgh campus, I looked up to see a robot blocking my path.

This wasn’t unexpected. Over the summer, several four-wheeled, knee-high robots had been roaming campus, unmarked and usually with a human handler several feet behind. Recently they’d multiplied, and now they were flying solo. They belonged to Starship Technologies, I learned, an autonomous delivery service rolling out on college campuses across America.

As a chemical engineering Ph.D. student at the University of Pittsburgh who uses a power wheelchair, I figured it wouldn’t be long before I met one of these bots in a frustrating face-off on a narrow sidewalk. What I didn’t realize was how dangerous, and dehumanizing, that scenario might be.

The robot was sitting motionless on the curb cut on the other side of Forbes Avenue. It wasn’t crossing with the rest of the pedestrians, and when I reached the curb, it didn’t move as the walk signal was ending. I found myself sitting in the street as the traffic light turned green, blocked by a non-sentient being incapable of understanding the consequences of its actions.

I managed to squeeze myself up on the sidewalk in a panic, climbing the curb outside the curb cut in fear of staying in the street any longer—a move that causes a painful jolt and could leave me stuck halfway up if I’m not careful.

Then I did what a lot of upset people do: I sent off a thread of angry tweets about the experience.

Read the full article here: https://www.citylab.com/perspective/2019/11/autonomous-technology-ai-robot-delivery-disability-rights/602209/

PublicSource Essay on Lou Gehrig’s Disease and Laughter

In a first-person essay for PublicSource, Sarah Wood writes about a moment of levity she shared with her husband Charlie, who died from amyotrophic lateral sclerosis (ALS) in October 1997. Read Sarah Wood’s story here.

ALS and Laughter PublicSource
Sarah Wood holds a framed photo of her and her late husband, Charlie, at her home located in Export, Pa. The couple bought the house in 1988 and raised their daughter there. (Photo by Kat Procyk/PublicSource)