CHICAGO - For 60 years, Jerry Lewis has hosted the Muscular Dystrophy Association annual Labor Day telethon. And for about 20 years, one of "Jerry's Kids" has been at odds with him over the way the money is raised.

Mike Ervin appeared on the telethon when he was six years old. Now he's a writer and disability rights activist who speaks out against the telethon because he claims it promotes stereotypes of people with disabilities as objects of pity.

At the same time, Ervin says he understands that people who answer the phones and appear on the show mean well.

"Of course we all want to give, but we really need to use the telethon as an opportunity to really seriously think about what charity is. At what point does it become something to deny or to ignore what we have to do?"

Ervin says with the unemployment rate up around 20 percent for people with disabilities, he prefers investments in programs that promote jobs and help people stay out of institutions.

"The infrastructure is still bad. They're still in institutions because services aren't there, and all these problems continue to exist."

Because of stereotypes, Ervin says many people treat him like a helpless person when they see him in his power chair. He cites, for example, an incident outside a coffee shop as he waited for the streetlight to change. A passerby mistook Ervin's newly purchased cup of tea for a beggar's cup.

"A man came out and held out his hand, and his hand had change in it. Then he saw that I had a lid on the cup, and he said 'Oh, shut down for the day, huh?'"

People with disabilities need jobs, not pity, Ervin says. In past years, he has contacted the state attorney general to check the telethon organization's 990 federal tax form to try to get clear info on how much is raised in contrast to how much it costs to produce the telethon.

"That form will tell you exactly what they make and how they make it. And they raise, curiously enough, quite a bit of money without their telethons."

He adds that he has nothing against the Muscular Dystrophy Association raising money, he just thinks the organization should take a different approach. An association spokesman says that they try to portray people with disabilities as leaders in the community.

Disability rights groups have produced a half-hour documentary on Ervin's fight and posted it on the Web. It can be viewed at www.thekidsareallright.org.




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The Montana chapter of the American Civil Liberties Union has filed class-action lawsuit challenging a measure barring people from listing a gender on their birth certificate other than the one they were born with.

Montana lawmakers passed Senate Bill 280 in 2021, which requires a court order to change gender on a birth certificate. A state court issued an injunction against the measure but now the state health department has put a total ban on changes to sex designations on birth certificates.

Akilah Deernose, executive director of the ACLU of Montana, called the measure part of a "concerted and unrelenting attack" on the civil rights of people who identify as transgender.

"We've previously sued on the birth certificate issue," Deernose pointed out. "Once again, we're seeing the state implement laws and rules and policies that unfairly target transgender people."

On the other side, some people argued birth certificates contain vital statistics and should be based on the facts at the time of birth. The suit awaits action in state court.

Deernose noted beyond privacy rights, the birth certificate measure has the potential to force a person to declare themselves to be someone other than who they are, based on their declared identity.

"And who they know themselves to be," Deernose observed. "That puts them at risk of discrimination and also forces them to out themselves every time they share those identity documents."

The suit also challenges a motor vehicle department policy forbidding changing sex designations on driver's licenses.

New York state lawmakers have appointed members to the Community Commission on Reparations Remedies, created through legislation Gov. Kathy Hochul signed in 2023.

Its goal is to examine the legacy of slavery and its continuing impacts on black New Yorkers. The commission will develop a report outlining recommendations for addressing these inequities.

Linda J. Mann, co-founder of the African American Redress Network, said there is one problem facing the commission: a lack of funds.

"It is absolutely imperative that funds for these types of task force, because of the amount of research that's going into it, is an imperative," Mann emphasized.

While the bill had plenty of Democratic support, it drew the ire of Republican lawmakers.

Many areas of the country are determining how to redress past disparities Black people face. A recent report found philanthropies have received millions in funds stemming from depriving Black people of opportunities to build wealth similar to those of their white counterparts.

The New York commission will have to present its findings in 2025.

A 2021 Pew Research survey showed three-quarters of Black Americans surveyed support reparations, while only 18% of white Americans support it.

Along with the U.S., countries worldwide are navigating reparations, with Mann noting they are not always compensatory.

"We're not talking about just altering economic wellness," Mann pointed out. "There's other ways in which historical harms have led to disparities in education, in health, in housing."

Beyond New York, California is the only other state to have created a reparations commission. California's reparations task force recommended some compensatory reparations based on factors such as health harms, mass incarceration and over-policing, housing discrimination and the devaluation of African American businesses. But, it wasn't certain how much all of this would amount to.

By Faith Fistler for Kent State NewsLab.
Broadcast version by Nadia Ramlagan.

The first time Tyana Barton was singled out because of her hair was when she was told to straighten it before a dance recital.

"That was like the first time in maybe 10 years I've ever had to straighten my hair. So I was like, distraught about that," Barton said. "And everybody was just like, 'it's not that serious'. And I'm like, 'it is, though. It is.'"

At the predominantly white studio in Dayton, Barton's instructor wanted all the dancers to look the same for a particular performance. Barton, being the only Black dancer, was asked to straighten her afro-textured hair to comply.

"I'm looking at all of these other girls with long hair, and it's just like perfectly straight. And then I'm having to go over my hair several times with the straightener just to get it to any form. It made me super emotional," said Barton, who is now a fashion merchandising student at Kent State University.

In Ohio, there is no statewide legal protection against hair-based discrimination from employers and schools. Individuals can be told to change their afros, braids, dreadlocks and twists or denied employment opportunities if it does not align with dress code standards.

The Creating a Respectful and Open World for Natural Hair Act, otherwise known as the CROWN Act, would provide statutory protection for individuals discriminated against for wearing protective hairstyles unique to Black culture.

Rep. Juanita Brent (D-Cleveland) has been trying to get the act off the house floor since 2020. In 2023, she reintroduced House Bill 178 for the third time, now with bipartisan support from republican Rep. Jamie Callender (R-Concord).

"This is my life story. My hair may be straight now, but most times my hair is in braids," Brent said. "And I just think it's crazy that there are people who are being removed from classrooms, who are not allowed to participate in sports events and are being removed from job opportunities because they're choosing to have their hair in braids and afros."

The legislation has already passed in cities such as Columbus, Akron, Cincinnati and Cleveland Heights.

"There are so many places where discrimination is occurring. So sometimes it takes a lot longer to do it in every city, and every community," she said. "Sometimes people don't realize the need for it until it happens to your neighbor, your grandchild, it happens to yourself."

The Ohio Chamber of Commerce has testified against H.B. 178, arguing that it "increases civil liability for employers, limits at-will employment in our state, and hampers the ability for businesses to set their own workplace policies."

Kevin Shimp, who testified on behalf of the Chamber, did not respond to interview requests.

The legislation is currently with the House Civil Justice Committee and has until December 2024 to pass.

"Controlling people's hair is almost like putting people in their place and saying you don't belong here," Brent said.

The history of what is considered an acceptable presentation of Black hair in the United States dates back to slavery when European aesthetics became the standard, said Mwatabu Okantah, department chair and professor of Africana Studies at Kent State University.

"On the one hand, many of our people have just ignored it and have lived according to our own aesthetic values, even within the context of being here in the United States," Okantah said. "Then, others of our people have internalized it and have struggled with extremely negative perceptions of ourselves, seeing ourselves the way white society sees us."

Black people's response to the European aesthetic has gone through cycles of assimilating to the social norm to embracing natural hairstyles in spite of it. Okantah said the cultural shift in recent years could be attributed to changing attitudes and Black people holding more positions of power.

"Enough of us now are scholars, mental health professionals, lawyers, and politicians. And so we have more tools to take that back. So I think the CROWN Act came out of that," he said.

The CROWN Act was introduced in California in 2019. It is now law in around two dozen states. The House of Representatives approved the CROWN Act in 2022, but the Senate did not.

Wendy Greene, a professor at Drexel University Thomas R. Kline School of Law and founder of #FreetheHair, has served as an advisor since the CROWN Act was conceived and has found the experience "rewarding".

"It's been really great to be able to see how this legislation is empowering young people to be advocates, young people to express their racial and cultural identities freely in their schools and their workplaces," Greene said. "And to see in turn, how people are using this legislation to educate and enrich others who may not really be familiar with this kind of discrimination because it's not their experience."

While the legislation will not end racial discrimination, the CROWN Act means employers could be found financially responsible for an individual's loss of job opportunity and emotional or psychological damage, Greene said.

"The major legal obligation is to just to stop engaging in the discrimination in and of itself," she said.


Faith Fistler wrote this article for Kent State News Lab. This collaboration is produced in association with Media in the Public Interest and funded in part by the George Gund Foundation.


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