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.
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.”
A medical assistant and nurse check paperwork during a drive-up COVID-19 screening in Seattle on March 17. (Karen Ducey/Getty Images)
By NCDJ board member Amy Silverman, for ProPublica/Arizona Daily Star
Advocates for people with intellectual disabilities are concerned that people with Down syndrome, cerebral palsy, autism and other such conditions will be denied access to lifesaving medical treatment as the COVID-19 outbreak spreads across the country.
As Silverman reports, several disability advocacy organizations filed complaints this week with the civil rights division of the U.S. Department of Health and Human Services, asking the federal government to clarify provisions of the disaster preparedness plans for the states of Washington and Alabama.
Some state plans — including Alabama’s — make clear that people with cognitive issues are a lower priority for lifesaving treatment. Alabama’s plan reads that “persons with severe mental retardation, advanced dementia or severe traumatic brain injury may be poor candidates for ventilator support.”
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.
A medical professional carries a human organ for transplant. Courtesy FloridaPolitics.com
By A.G. Gancarski, Florida Politics
The Florida Senate just unanimously passed a House bill that ensures people with disabilities can receive organ transplants without fear of discrimination.
Jacksonville Republican Rep. Jason Fischer proposed the bill, claiming that transplant facilitators don’t realize that protections against discrimination covered by The Americans with Disabilities Act also applies to them.
Amy Silverman’s daughter Sophie, who has Down syndrome, wants to be a dance teacher. (Courtesy Amy Silverman)
By Amy Silverman, Here & Now
Amy Silverman‘s daughter Sophie wants to be a dance teacher. But Sophie has Down syndrome and the opportunities for meaningful employment for people with intellectual disabilities are minimal.
This weekend, the New York Times ran a long piece about a 79-year-old man named Richard Shaver who murdered his 80-year-old wife, Alma, who suffered from Alzheimer’s disease, and then killed himself. In a storytelling decision that has infuriated disability-rights activists, the piece was written not as a violent-crime story, but as a poignant romance. As the story’s writer, Corina Knoll, tweeted: “A man shot his wife with Alzheimer’s, then killed himself. I wanted to understand their story. Turns out, it was one of love.”
The piece took readers through the Shavers’ love story, describing how their courtship began at a high-school dance in 1956 and lasted for over 60 years, during which time they raised three daughters. “They were absolutely soul mates — crazy about each other,” says a neighbor quoted in the piece. After Alma was diagnosed with Alzheimer’s, their daughters tried to intervene, but, as they told the Times, Richard insisted he was “taking care of it” and refused to take their advice or assistance. This June, he crawled into bed while she was sleeping and shot her, then himself.
The Shavers’ children seem eager to read their father’s act as one of tenderness, which may have affected the way Knoll framed the story. “So common, yet so personally cruel — [dementia] comes with no road map for those tending to the afflicted,” she writes. The piece doesn’t make it clear whether Alma might have once made an end-of-life plan with her husband, and it could be impossible to know now that both parties are dead. But the critics who found fault with the piece say the way the story is told exemplifies everything wrong with how the media covers crimes against disabled people.
It began almost playfully, like tiny hiccups in her mind. She would forget she had already changed the sheets and change them again, or repeat a thought in the same breath.
Then the illness amplified.
She grew confused by everyday tasks. Became convinced her parents were still alive and insisted upon a visit. At social gatherings, she was anxious and fearful. She forgot how to sew and cross-stitch. Forgot the faces of her children.
She did remember her name. Alma Shaver. But not her age. Eighty.
And sometimes, she did not know her husband.
He was Richard Shaver, a man whose wife of 60 years had been found by dementia, that thief that robs the minds of 50 million people worldwide. So common, yet so personally cruel — it comes with no road map for those tending to the afflicted.
For a while, Mr. Shaver managed. He would sit next to his wife and rub her hand, her knee, to try to calm the unease. He left notes explaining simple tasks. If she was stuck repeating herself, he asked yes or no questions to break the cycle. Did you graduate in 1957, Alma? Why, yes.
When visiting family, he picked out her clothes, usually the beige sweatshirt with the collar and a bird stitched on the front. He resorted to fast food in the drive-through lane so she wouldn’t have to get out of the car.
By the spring of this year, things had gotten worse, as they always do with an illness that takes and takes and takes. Ms. Shaver had slipped beyond a murky fog that her husband could not join.
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.
Student journalist Drew Dees is kind but firm when he interviews people for his Florida college TV station.
Please stand up, he instructs them. Don’t crouch down in front of me. I’m not a baby.
He understands that people might not be used to seeing a journalist in a wheelchair — he never saw any on TV when he was growing up — but he demands to be treated the same as any other reporter.
“One of the big barriers in this career field is getting people to … take you seriously,” he said.
A 24-year-old junior at the University of Florida, Dees said he’s had overwhelming support from his family and professors as he pursues a degree in broadcast journalism. His dream of being an on-air reporter and anchor feels even more real now that his insurance company has agreed to provide him with a new $50,000 wheelchair. The Permobil F5 Corpus VS chair will allow him to move from a sitting position to standing with the touch of a button.
“It’s just going to make such a world of difference for me,” he said. “Just to be able to stand up and be able to talk to people on eye level and not have to look up at someone; that’s just the most amazing feeling to me.”
The chair will also allow him to do what’s known in TV news as a standup, where a reporter shares information on camera while standing or walking.
“It’s going to allow me to be more creative, to have more of that demonstrative standup that we look for instead of just being a talking head,” he said.
Dees got a test run of the new chair during a recent fitting to make sure it’s properly adjusted to his body. The chair won’t be ready for several months, but Dees was so excited that he posted a picture on social media of him using the chair to stand up. On a whim, he shared that photo and story in a journalism Facebook group that has about 15,000 members.
