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ADA at 30 years: ‘Hey, we’re here’

Visibility for disabled people is increasing

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Americans With Disabilities Act, gay news, Washington Blade
President George H.W. Bush signs the Americans With Disabilities Act in 1990. (Public domain photo by the National Museum of American History via Flickr)

(Editor’s Note: This is the first in a series on the Americans with Disabilities Act 30th anniversary.)

In the late 1980s, white cane in hand, I walked from my office in Manhattan to grab a burger for lunch at McDonald’s. “Sorry, ma’am,” the guy behind the counter said, “blind people can’t eat here.”

After I said I wouldn’t leave until I was served, I was allowed to order. The cheeseburger was delicious! But there wasn’t much I could do to hold McDonald’s legally accountable for its attempt to exclude me because of my disability.

Why am I telling you this story? Because, 30 years ago this month, life changed for people like me. On July 26, the Americans with Disabilities Act became law. From the moment that President George H.W. Bush signed the landmark legislation, there was hope for the one in five Americans, queer and non-queer, with disabilities.

Restaurants and hotels could turn us away. Hospitals could refuse to provide sign language interpreters for deaf patients. A library (as had once happened to me) could tell us that we shouldn’t be out in public alone. But though the discrimination would be hurtful or even life-threatening, we could fight back with the ADA.

I’ll never forget hearing Bush at the ADA signing say, “Let the shameful walls of exclusion finally come tumbling down!”

At that moment, a feeling of power began to bubble within me. The struggle would be long – we’d lose battles along the way. But, we had a legal weapon in our fight for justice.

Sometimes, I almost forget what it was like before the ADA. Until memories come back. My (late) mother, who had diabetes, was part of the World War II generation. She worked as a lab technician when my Dad was in veterinary school. She didn’t disclose her disability to her employer, and said, “If I did I would have been fired.”

I wish I could tell you that with the ADA the walls of exclusion had totally tumbled down. That ableism with its prejudice and lack of disability accessibility had completely melted away. That the LGBTQ community had left its ableism behind to welcome and celebrate queer and disabled folk. If only.

The ADA, in many ways – from curb cuts to closed captioning – that have transformed the landscape for disabled and non-disabled people. (Think moms and dads pushing their babies in strollers over curb cuts. Turning on closed-captioning when you’re watching TV in a noisy place.)

Yet, 70 percent of people with disabilities of working age are unemployed.

“If history is a guide, one of the surest ways to get an Oscar is by being a non-disabled person playing a disabled character,” the New York Times said in its series of articles marking the ADA 30th anniversary.

Some 80 percent of characters with disabilities on TV were played by non-disabled actors, according to a report released by the Ruderman Family Foundation released early this year. How ironic, when most of us either are disabled, have a loved one with a disability or will likely to become disabled as we age.

The fear of disabled people – the desire to keep us hidden away, closeted — is similar to how society historically viewed LGBTQ people. “The psychological longing to keep disabled bodies invisible– much as with trans bodies – is still so strong, Sheila Black, co-editor of the anthology “Beauty Is a Verb: The New Poetry of Disability,” said in an email.

Yet, there’s hope! Visibility for disabled people, queer and non-queer, is increasing. Ali Stoker, an actress with a disability, won a Tony in 2019 for her role of Ado Annie in “Oklahoma.” Ryan O’Connell, a gay actor and writer with cerebral palsy, is editing season 2 of the fab Netflix series “Special.”

The LGBTQ community is beginning to become inclusive toward its queer and disabled members. More gatherings have sign language interpreters. Festivals, such as OutWrite, are having readings and performances by disabled writers and artists. “There’s been a greater awareness of our existence,” Raymond Luczak, editor of “QDA: A Queer Disability Anthology,” emailed me, “We just have to be steadfast and remind them, ‘Hey, we’re here.’”

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

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Opinions

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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Commentary

BookMen DC: Still going strong at 25

Celebrating the longest-running LGBTQ literary group in the area

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On May 11, 1999, what was originally known as the Potomac Gay Men’s Book Group convened for its first meeting. A lot has changed over the ensuing quarter-century, starting with our name. But our identity remains true to the description on our blog: “an informal group of men who are interested in gay literature (both fiction and non-fiction).”

Our founder, Bill Malone, worked at the Whitman-Walker Clinic and started the group using donations of remainder books from a wholesaler in New York. Soon after that, members decided to get their own books, and began purchasing them through Lambda Rising, which offered a discount for such orders until it closed in 2010. The group later renamed itself BoysnBooks, and then became BookMen DC in 2007, which is also when we started our blog

Following Bill’s tenure, Tom Wischer, Greg Farber and Tim Walton (who set up our blog) have served as our facilitators. I succeeded Tim in that role in 2009, and am grateful to him and all my predecessors for laying such a solid foundation for our group. 

Twenty-five years after our founding, we are the longest-running LGBTQ literary group in the DMV. So far, we have discussed nearly 400 books, ranging from classics like Plato’s Symposium to graphic novels, gay history and memoirs, and novels by James Baldwin, Michael Cunningham, E.M. Forster and Edmund White—to name just a few of the many authors and genres we’ve explored.

Currently, we have more than 120 names on our mailing list, of whom about a quarter attend meetings at least occasionally. (Average attendance at our meetings is about 10.) Our members variously consider themselves gay, queer, bisexual, or transgender, and those varying perspectives enhance our discussions. I would be remiss if I didn’t acknowledge that, like many LGBTQ organizations, we are not nearly as diverse as I wish we were. Although we do have young members and people of color within our ranks, we are predominantly white and middle-aged or older. We have tried various forms of outreach to further diversify our membership, and will keep working on that.

How has BookMen DC not just survived, but thrived, when so many other book clubs and LGBTQ groups have foundered? I would identify several factors.

First and foremost, we are welcoming. We have no minimum attendance requirements and charge no dues. And we expressly encourage members to join us at meetings even if they haven’t finished the selection we’re discussing.

We are also collaborative. Each fall, members nominate titles for the next year’s reading list; I then compile those suggestions into a list for members to weigh in on, and the results of that vote determine what we will read. 

Finally, we are flexible and adaptable. Over the years, we have met in locations all over the District. Currently, we meet on the first Wednesday of each month at the Cleveland Park Library (3310 Connecticut Ave. NW) from 6:30-7:30 p.m. to discuss entire books; afterward, those interested go to dinner at a neighborhood restaurant.

When the pandemic struck four years ago, we took a break for a couple of months before moving operations online. (Thank God for Zoom!) Even after the venues where we’d been meeting reopened, we have continued to meet virtually on the third Wednesday of each month, from 7-8 p.m. During those Zoom sessions, we discuss sections of anthologies of poetry and short stories, as well as short standalone works (e.g.,  plays and novellas).

If you enjoy LGBTQ literature and would like to try us out, visit our blog: https://bookmendc.blogspot.com/ and click the link to email me. We’d love to meet you!

Steven Alan Honley, a semi-retired musician, editor, and writer, has been a member of BookMen DC since 2000 and its facilitator since 2009.

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Opinions

Rosenstein: Vote for Angela Alsobrooks and April McClain-Delaney

Two strong, accomplished women for Maryland

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I am endorsing two strong accomplished women for Maryland. The first is Angela Alsobrooks, for United States Senate. Second is April McClain-Delaney for Congress in Maryland’s 6th District. Both women are superbly qualified, and will fight hard for, and be a credit to, the people of Maryland.

Angela Alsobrooks is county executive of Prince George’s County. She was born and raised in Maryland. She is a graduate of Duke University, and the University of Maryland, School of Law. She was the first full-time Assistant State’s Attorney to handle domestic violence cases in Prince George’s County. She made history as the youngest, and first woman, to be elected Prince George’s County State’s Attorney where she stood up for families, taking on some of Maryland’s worst criminals, while treating victims and the accused with dignity and respect. Under her tenure, violent crime dropped by 50 percent.  

Alsobrooks has said, “This year we know the rights of women to control their own bodies and healthcare, is at the top of the list of concerns for so many Marylanders, and decent people across the country, both men and women.” Because of this Maryland must elect a strong woman to ensure we win the fight on this issue. There are many reasons to support Alsobrooks. One is if we look at the United States Senate, what is clearly missing, is an African-American woman. That is a disgrace. Marylanders have the ability to make that right by voting for Angela Alsobrooks. 

But there are other reasons to vote for Angela. She understands how federal policy impacts states and counties, directly impacting her constituents, because she has dealt with the issues that arise from the bills Congress passes. Angela is a pragmatic progressive, and will work across the aisle to get things done. Nothing prepares you more for negotiating with Republicans in Congress, than negotiating with a county council and community activists, and she has done both successfully for many years. She will continue to fight for LGBTQ equality having named the first LGBTQ liaison in PG County. She supports legislation to fight climate change, and supports student loan forgiveness. Maryland leaders know Alsobrooks is the right candidate. She has been endorsed by Gov. Wes Moore, Lt. Gov. Aruna Miller, Sen. Chris Van Hollen and former Sen. Barbara Mikulski, Congressmen Jaimie Raskin, Steny Hoyer and Glenn Ivey; and an overwhelming number of local legislators and leaders in PG County. They all know how good she is, and how much she will do for Maryland, and the nation. I urge a vote for Angela Alsobrooks in the Democratic Senate primary.

I also join a hero of mine, former Speaker Nancy Pelosi, Congressmen Steny Hoyer and Dutch Ruppersberger, along with a host of Maryland legislators and office holders, who have endorsed April McClain-Delaney. She has more than 30 years’ experience in communications law, regulatory affairs, and advocacy, across a broad spectrum of government, private sector, and non-profit engagements. She has served as the Washington director and a board member of Common-Sense Media, a leading non-profit dedicated to how media impacts kids health and wellbeing. Her policy and advocacy efforts have spanned digital citizenship, bridging the digital divide, and tech equity issues, privacy matters, spectrum, and internet governance. She has served as assistant general counsel and regulatory affairs director at Orion Satellite where she oversaw domestic and international regulatory efforts in approximately 20 countries, and served as one the founding board members of the International Satellite Association.

In addition to her professional endeavors, she has served on numerous boards and councils. These include the Meridian Women’s Leadership Council; Georgetown Institute for Women, Peace and Security; Georgetown Law Center (past chair); Northwestern University Board of Trustees; the International Center for Research on Women; Innocents at Risk; and the Sun Valley Community School. She is a graduate of Northwestern University and has her JD from Georgetown Law Center.  Delaney is the best candidate to win the 6th District for Democrats. Delaney understands rural Maryland having grown up on a farm in Iowa. She understands government today, serving as the Deputy Assistant Secretary for Communications and Information, U.S. Department of Commerce, in the Biden administration. 

When it comes to the issue of protecting a woman’s right to control her own body and healthcare, no one will match April in her vigilance. She is a mother fighting for the rights for her four daughters. She is a strong supporter of LGBTQ rights, and will support policies to fight climate change, support debt relief for students, and will work to protect our national security. She understands what it means to work across the aisle without giving up any of her principles. She is the kind of person we need in Congress. I urge a vote for April McClain-Delaney in Maryland’s 6th Congressional District, Democratic primary. 

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

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