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Igniting a disability rights revolution

‘Crip Camp’ tells story of pioneering protesters who won new rights

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Kathi Wolfe, gay news, Washington Blade

Kathi Wolfe (Washington Blade photo by Michael Key)

Recently, my cousin Marsha asked me if I wished I didn’t have a disability. I’ve been low vision since birth. Almost daily, a family member, friend, or stranger tells me my life must suck because I’m blind. I love Marsha. But, “I don’t want to be non-disabled,” I told her, “my disability is part of who I am. It’s part of what makes me Kathi!”

“I like being who I am,” I added. Why am I proud to be myself in a culture that often stigmatizes me because of my disability and sexuality? The roots of my pride go back to a group of teens who listened to rock music, smoked pot and made out at Camp Jened, a summer camp for disabled teenagers in the Catskills in the 1960s and 1970s.

The story of those campers and how they moved on from their “mini-Woodstock” to change the world is told in the Oscar-nominated documentary “Crip Camp: A Disability Revolution.” The documentary, produced by Barack and Michelle Obama, is directed by Nicole Newnham and Jim LeBrecht, a former Camp Jened camper. The doc, featuring rock music, raging sexuality and disability pride will give you, non-disabled, disabled, hetero or queer, a contact high.

You’ll learn from “Crip Camp” about how more than 100 disabled protesters, hetero and queer, led by Camp Jened alums, took over a San Francisco federal building for nearly a month in 1977. The sit-in, believed to be the longest non-violent takeover of a federal building, ignited a disability rights revolution.

Thankfully, the documentary doesn’t lecture us. The doc does what great documentaries do: It tells a riveting story.

I spent a week at camp when I was nine. I’m sure the camp staff meant well, but I was the only disabled camper there and ableism prevailed. My counselor cut my meat for me at dinner (though I had no problem with feeding myself). I was given a “special” award for my “courage.” Though I screamed when I found a tick in my hair.

I would have loved to have been at Camp Jened. There, the campers were treated as three-dimensional human beings. They weren’t “special.” At school during the year, they were often segregated in special education classes and shunned by the non-disabled kids. “I didn’t date in high school,” Judith (“Judy”) Heumann, a Camp Jened alum and author with Kristen Joiner of “Being Heumann: An Unrepentant Memoir of a Disability Rights Activist,” says in “Crip Camp.”

But, at Camp Jened, there were make-out sessions behind the bunks, she adds.

Lionel Je’Woodyard was a counselor at Jened. The disabled teens at Jened faced some of the same discrimination that he encountered as a Black man, Je’Woodyard says.

Years later, the seeds of self-respect planted in the teens at Jened bore fruit.

Heumann, who has polio and uses a wheelchair, is a founder of the disability rights movement. In April 1977, she and (the late) disabled, lesbian activist Kitty Cone led a month-long disability rights protest. The takeover was supported by the Black Panthers and the LGBTQ community.

Crip Camp, through archival footage and interviews with Heumann, Cone, queer disability activist and writer Corbett O’Toole and others, conveys the significance of this historic sit-in.  Protests were held in federal buildings in other cities, including, Washington. D.C.  as  result of the protests, on April 28, 1977, the regulations implementing Section 504 of the Rehabilitation Act of 1973 were signed.

“Section 504” says if you receive federal funds, you can’t discriminate against people because they’re disabled. For example, an employer receiving federal funds can’t deny you employment because you’re disabled. This was manna from heaven for we who’d been excluded. Section 504 was a precursor to the Americans with Disabilities Act.

The 504 sit-in was the Stonewall of the disability rights movement. Like many, I wasn’t there at the sit-in. Yet, I wouldn’t be out and proud today, if not for section 504 or Camp Jened.

 

Kathi Wolfe, a writer and a poet, is a regular contributor to the Blade.

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Rosenstein: Vote McGuiness for Delaware’s 14th District

For responsible growth and continued improvements in Sussex County

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I know Kathy McGuiness, and there is no one more qualified to replace Pete Schwartzkopf as 14th District Representative. 

I have owned a home in Sussex County for more than 25 years, and have been coming to Rehoboth Beach for 40. I followed Kathy’s career, and know the time she has given to the people of the state and District. No one can match her ability to do the job. Kathy is a health care professional, and a mother, committed to continue to fight to protect every woman’s health and reproductive rights.

“As a registered pharmacist, I’ve been on the front lines when it comes to health care,” she said. “I’ve been with patients who cried at the counter when they couldn’t afford their medicines, administered COVID shots during the pandemic, struggled when my mother couldn’t schedule a doctor’s appointment for weeks, and joined my sister to advocate for her son, who is in a wheelchair, when he can’t get the services he needs. We have a health care crisis in Sussex County.”  

Kathy is committed to attracting, and retaining, doctors, nurses, specialists, and pharmacists, to the fastest-growing county in the state. She has committed to seeing state and federal regulators never again identify the families, and retirees, in the 14th district, as being under-served in healthcare.  

Kathy graduated from Cape Henlopen High School and her mom taught 6th grade at Shields Elementary. She knows first hand the struggles of our children, and teachers. She is committed to listening to, and working with, local and state officials, parents, and teachers, to ensure the resources needed to facilitate the best possible education for all our children.

Born and raised in the district, now bringing her family up here, Kathy understands the value of the unique, precious, natural resources in Eastern Sussex County. She will continue to work to protect our beaches and natural resources. She will fight for state funding for sensible, responsible, infrastructure and traffic projects, that truly meet the needs of the community. Kathy takes the fight to Dover understanding tourism with her experience as a six-term Rehoboth Beach Commissioner. She is a businesswoman, and founding president of Rehoboth Beach Main Street. She will fight to protect and promote local businesses, press DelDOT to improve traffic flow, and importantly, work with state and county officials to create more safe and affordable workforce housing.

No one has the broad experience Kathy has. She has been a member of the 14th District’s Democratic Committee; a trustee at Delaware State University; a member of the Delaware Film Commission; a member of CAMP Rehoboth Board of Directors and the YMCA Sussex Board; and Lewes-Rehoboth Meals on Wheels board. She volunteered with Delaware Food Bank, Just Soup Ministry, Shepherd’s House, Planned Parenthood, and the Seashore Striders.

Kathy was named State of Delaware, Tourism Person of the Year; Business and Professional Women’s Employer of the Year; and recently, 2022 Delaware Pharmacist of the Year. She is married to Steve, a river boat pilot, and is mom to three amazing children. Has one grandchild, and another on the way. 

Let me address the only issue some may have with Kathy. She was accused of six very questionable criminal counts when serving as a successful State Auditor. Of the most serious, the jury found her not guilty on three, and the judge threw two others out. She was convicted of one simple misdemeanor, for hiring her daughter as an intern, which she only did after the Delaware Attorney General assigned to her office, said it was legal. As Pete Schwartzkopf said at her campaign announcement, this is nothing that so many others in the state have done. Kathy said, “I’ve paid my debt to the state through a fine and community service. Now I’m ready to get back to what I have done my entire adult life — help and serve the people of Eastern Sussex County.” 

So, I am honored to add my name to those of Speaker of the Delaware House Pete Schwartzkopf, 20th District Representative Stell Selby, Dewey Beach Mayor Bill Stevens, Dewey Council member Paul Bauer, former Rehoboth Planning Commission Chair Richard Perry, former Ambassador Tom McDonald, former Rehoboth Beach Commissioner Steve Scheffer, former Dewey Mayor Pat Wright, and former Democratic County Chair and Judge, Mitch Crane, all endorsing Kathy McGuiness for 14th District Representative. 

They know Kathy is the candidate for those who want to see responsible, sustainable growth, and continued improvements in Sussex County. She said, “When elected, I promise to listen to your questions and concerns. I will reach out, and remain available for conversations with everyone. I will serve with renewed dedication and humility. I promise to give it everything I’ve got.” So, vote Kathy McGuiness for District 14th Representative on Sept. 10. She will make us all proud.

Peter Rosenstein is a longtime LGBTQ rights and Democratic Party activist. He writes regularly for the Blade.

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Advocating for the Queer Community On and Off The Job

One organ donor can save up to eight lives

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Kai Sprando (Photo Courtesy Infinite Legacy)

As a proud trans man, Kai Sprando recognizes the importance of visibility and education in fostering understanding and acceptance of the LGBTQIA+ community. His commitment to spreading awareness and advocating for queer experiences is something he champions on both a personal and professional level. 


In 2019, Kai began working in the organ donation field as it provides a convergence of purpose and opportunity, which he embraced wholeheartedly to make a difference in people’s lives. Kai works as an Instructional Designer at Infinite Legacy, where he develops educational resources, curriculum and training plans primarily for clinical staff. At Infinite Legacy, he found not just a job, but a community of compassionate individuals who support him in every aspect of his trans journey.

In Kai’s eyes, organ donation is more than a medical procedure; it is a lifeline and second chance for individuals with end stage organ failure. He also sees it as a way for organ donors to continue their legacy of kindness beyond their time on Earth. He is deeply moved by the profound impact that one organ donor has to save up to eight lives. This knowledge fuels Kai’s passion for his work, driving him to encourage others to learn about the transformative power of organ donation.

For Kai, education is key. He believes that the more people know about and understand organ donation, the better equipped they are to make informed decisions and advocate for the cause.

“The opportunity to make a difference by saving lives as an organ donor is very powerful. When I pass, I want to know that if nothing else, I tried my best to help others. That’s what life is all about to me…finding ways to make the hard things in life a little less hard, one act of kindness at a time.” said Kai.

With his background in teaching and his viewpoint as a trans man, Kai has been invited to and spoken at several national organ donation and transplantation conferences providing insight and perspective on what it means to be trans and queer, allowing his peers the ability to be more effective and caring while interacting with LGBTQIA+ people and their families. 

Kai is passionate about advocating for marginalized communities and through his openness, vulnerability and willingness to share his lived experiences, Kai contributes to positive change in healthcare, particularly around gender and sexuality representation.

As he continues to advocate for change and build a better infrastructure around LGBTQIA+ needs and representation, Kai remains hopeful for the future. He has seen the important shifts and positive changes in healthcare in recent years and is determined to keep pushing for progress, one conversation at a time.

Everyone can register to be an organ donor. To learn more, visit infinitelegacy.org

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Proposed Medicaid rule may hurt people with HIV

A freeze on drug development would be a crushing blow

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We’re fortunate to exist in a world where it’s possible to live for a long time with HIV. Medical science has made astounding progress since the 1980s, when a positive diagnosis was considered a death sentence. Queer activism helped bring about the shifts in policy and attitude that made this success possible.

But our job isn’t over yet.

HIV isn’t spread evenly across the United States. In urban areas with high poverty, it’s as prevalent as it is in low-income countries with generalized HIV epidemics, like Ethiopia and Burundi. This means that almost 40% of Americans with HIV get their health coverage through Medicaid, the government insurance plan for low-income people. And recently proposed changes to the program could halt future progress toward finding a cure.

Under the current Medicaid Drug Rebate Program, Medicaid receives a sizeable manufacturer rebate on brand-name drugs — calculated in part based on either 23.1% off the average price of the drug, or the best price available to another purchaser if that discount is higher.

But now, the Centers for Medicare & Medicaid Services (CMS), the federal agency that runs Medicaid, has proposed a new rule. It would require calculating a medicine’s best price by stacking the rebates and discounts on a single unit of drug that a manufacturer provides to different eligible purchasers.

Due to the interplay with other recent changes to Medicaid, in some cases, the total markdown could exceed 100% of the average price of the drug — meaning manufacturers would be forced to effectively sell the medications at a loss to Medicaid.

This could mean trouble for drugs whose largest market is Medicaid, like those that treat HIV. If manufacturers and their investors decide that it’s no longer financially viable to make drugs that primarily serve disadvantaged patients, then those medications might not be developed at all.

That’s concerning, given that many groundbreaking HIV therapies stemmed from private sector research and development. And with research inching ever closer to a cure, a freeze on HIV drug development would be a crushing blow to those of us living with the disease.

The proposed rule change also threatens the search for a cure with policies that target cell and gene therapies, areas in which scientists have recently made promising HIV-related breakthroughs. When cell and gene therapies come to market after years of research, they can often have high up-front costs — sometimes more than $1 million per patient. That’s in part because the field is so cutting edge and the therapies deliver long-term benefits, and in part because research failures in drug development are far more common than successes.

One CMS policy change would require manufacturers to report their research and development costs for specific high-price medicines to the agency. The government could make such information public, and use it to challenge drug prices. In addition, the rule proposed to specifically target accelerated approval drugs, a pathway that has allowed many patients with HIV/AIDS early access to lifesaving treatments.

The problem is that for every drug candidate in clinical trials that succeeds, nine fail. Sometimes they fail after years of research and hundreds of millions of dollars invested. To keep  the research money flowing, that one success needs to make up for the cost of the nine that washed out.

If Medicaid drives drug mandatory rebates so low that companies can’t recoup their investments, it will discourage them from pursuing the most cutting-edge avenues of research — and put some of them out of business. Biotech investors will abandon gene therapy and seek out more stable markets, and HIV research will suffer. Ultimately, patients living with HIV who rely on Medicaid will miss out on potential cures that never get developed. They may also lack access to therapies that do get created, given that the companies behind them could pull out of the Medicaid market altogether.

Forty percent of Americans living with HIV are Black, and 63% are gay and bisexual men.

As a queer Black man with HIV myself, I know all too well how devastating it is to receive that diagnosis, especially when you’re underinsured and living in poverty. But I also know that effective treatment can vastly improve quality of life. Without the sacrifices and the activism of those who came before us, HIV might still be a death sentence.

It’s up to us to continue the fight now. Our community deserves a shot at a cure. CMS officials urgently need to reverse course on this disastrous proposal. And if they fail to do so, it’s incumbent on HIV activists to push for the federal government to adopt policies that support affordable HIV treatments and research funding.

Guy Anthony is the president and CEO of Black, Gifted & Whole.

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