Sisterhood, Support, and Solidarity: Female-Founded Social Media Networks Offer Authentic and Creative Space for Women

By Karen Gullo

Art by Kseniya Makarova for Seismic Sisters

Art by Kseniya Makarova for Seismic Sisters

Author and women’s activist Tiffany Dufu had her own “crew” of peers, a group of women who gave support and advice, and tapped their networks to help her and each other in their professional and personal endeavors. She knew other women wanted crews of their own but, with busy lives, didn’t have the time to network, attend events to find the right people, forge connections, and organize meetings. Dufu saw a business opportunity to raise up women. In 2018 she launched the social networking platform The Cru, which today has matched hundreds of women with their own crew of professional women with whom they collaborate to meet goals, whether it’s getting a promotion, starting a fitness routine, or finishing a personal project.

Tech entrepreneur and startup founder Gina Pell was looking for a new venture after selling her style guide website Splendora in 2011. Pell, a San Francisco native, and business partner Amy Parker, both of whom began creating online communities years before social media networks were a thing, wanted to offer intelligent, edgy, and interesting online content for women. The result was The What List, a weekly email newsletter about their recommendations for everything from books to skincare products. Pell and Parker’s musings tapped into a need among readers for connection and community, and grew into a private women’s online community called The What Women. Today, over 35,000 members in seven cities share stories, exchange ideas, seek advice, and offer support and friendship on a daily basis. Pell and Parker just launched The What Alliance to connect female-focused brands to What List members.

Gina Pell, The What List co-founder

Gina Pell, The What List co-founder

These are just a few examples of a new kind of social media: women-founded social networks aimed specifically at women. They aim to create safe spaces where members can make friends, share stories, network, talk shop, or seek advice about work issues that they don’t feel comfortable talking about with co-workers. Like Facebook, Twitter, or Instagram, these social networks are a way of connecting online, but the similarities pretty much end there. Most don’t run ads; some are free or charge monthly or annual fees (from $10 a month to $10,000 a year). They are more private, personal, and conversational than the typical social network. A turning point for The What Women was when Pell and Parker posed a question to members: aside from sex, how do you derive pleasure? “By the end of the day we had 1,000 new members,” Pell said. “Women are eager for conversation.”

Jana Messerschmidt, partner at Silicon Valley venture capital firm Lightspeed Ventures and co-founder of #ANGELS

Jana Messerschmidt, partner at Silicon Valley venture capital firm Lightspeed Ventures and co-founder of #ANGELS

Female networks are more about community and less about selfies, more about supporting women than tearing people down, say founders. They don’t allow fights over politics, trolling, or computer-generated algorithms that spoon-feed content to users and control what they see on their feed. Because most are exclusively for women, members don’t have to worry that their male colleagues, HR director, or boss are reading their posts.

On traditional ad-supported platforms, with influencers, product placements, troll wars, and an emphasis on persona-building, “there’s so much noise, it’s never ending,” said Naj Austin, founder of Ethel’s Club and Somewhere Good, social media sites for people of color. “It’s a constant deluge of stuff, and we all feel the need to be around it, to be in the loop,” but to what end? It “creates a very weird sense of self,” said Austin. “You become kind of a character. Women feel like they can’t be themselves.”

Tiffany Dufu, The Cru founder

Tiffany Dufu, The Cru founder

Mainstream social media platforms like Facebook and Twitter, with global reach and billions of users, will continue to dominate social networking for the foreseeable future. But with women looking for networks that foster more meaningful connections, social media startups catering to the female perspective have started cropping up all over the place in the last few years. It’s a growing market that should be a wake-up call for social media entrepreneurs and investors.  

“It’s all about the programming of content,” said Jana Messerschmidt, partner at Silicon Valley venture capital firm Lightspeed Ventures and co-founder of #ANGELS, a woman-founded investment collective that provides capital for start-ups founded by women and people of color. “Being on broad mainstream social media networks is not always a soothing experience.” This has driven people to find new vertical platforms with strong sub-communities—Messerschmidt points to apps like Discord for gamers, Loupe for sports trading cards, and Locker Room for sport’s fans as examples of tight knit communities with well programmed content.

In researching this article, we found over 20 platforms for women, and heard about many more being launched or in the works. The platforms are mostly vertical and cater to specific groups: there are networks for working mothers, job seekers, women reentering the workforce, women of color, black women in tech, female engineers, senior executive women, empty-nesters, female entrepreneurs, mothers with small children, women over 50, and much more. They all have a few things in common: strict rules against bullying, bad-mouthing, and put downs. Trolls get the boot. Bringing your authentic self, being supportive and honest, offering help, sharing your experiences, or just listening are what’s required.

Sarah Lacy,  Chairman Mom founder

Sarah Lacy, Chairman Mom founder

Former tech journalist, author, and entrepreneur Sarah Lacy launched Chairman Mom, a subscription-based ($10 a month) platform for working moms, in 2018 as a place where badass women can get advice about parenting, workplace issues, and everything in between. “I found so much power in being a mother, but never felt comfortable in any online mothers’ group,” said Lacy, a San Francisco resident who has two elementary school-aged children. She wanted a group that was supportive and helpful, not classist or homogenized. A site that celebrates working mothers. “I really needed to build something for women like me,” she said.

Like other founders interviewed for this story, Lacy set out to raise money to start her business, no easy feat for women. The venture capital industry has a massive gender disparity problem. Only 11 percent of VC partners in the U.S. are women. Less than 3 percent of venture capital money invested in startups goes to female founders (yes, you read that right). If your startup’s customers are female, the odds of getting funded shrink significantly, Lacy says. Male VCs who might write a check for a female-founded startup aimed at working women would probably do so based on their perceptions about working women, which is probably way different from the founder’s. “We are not trying to sell anything,” Lacy jokes. “We’re trying to overthrow the patriarchy.”

Naj Austin, Ethel’s Club founder

Naj Austin, Ethel’s Club founder

She initially raised $1.4 million and had an all-women team of developers build software for the platform, where members are invited to respond to two or three curated questions (from members) posted each day. Questions range from how do I ask for a raise to how do I ask if there are guns in the home before letting my child do a playdate at a friend’s home. Lacy says Chairman Mom has thousands of members—most are women but no one is excluded, so there are some men and nonworking women on the platform. Members can join weekly free Zoom group sessions with experts leading discussions about work and parenting issues, or book a one-on-one call for advice with other Chairman Mom members who are career coaches, entrepreneurs, or parenting experts. Lacy raised a total of $3 million since launching, and recently started the Sisterhood Project, a 6-month fee-based virtual course on building community that’s open to Chairman Mom members and nonmembers.

Some female social network startups launched as shared work spaces or private clubs, and had to pivot and go digital because of the pandemic. COVID-19 devastated the economy, and  women have lost the most jobs during the pandemic. More than 22 million jobs were lost in spring 2020 when the pandemic began; a little over half have returned. But as of November, women held 5.3 million fewer jobs than before the pandemic, compared to 4.6 million for men. In December alone, women accounted for 100 percent of the 140,000 jobs lost in the U.S., according to the National Women’s Law Center. Women founders of social network platforms report seeing a surge in membership and engagement since the pandemic, as women seek support and connection in online spaces.

Seismic Sisters went in search of creative social media networks founded by women and these rising stars grabbed our attention!

Seismic Sisters went in search of creative social media networks founded by women and these rising stars grabbed our attention!

Brooklyn-based Ethel’s Club, a 4,700 square foot social club for people of color with a boutique, kitchen, yoga studio, café, and open meeting space launched in 2019, was thriving with 250 members and thousands on a waiting list when the novel coronavirus ended in-person group gatherings. The physical club shut down. Austin, 29, who had raised $1 million through crowdsourcing and funding from author Roxane Gay and others, knew she had to pivot. She believed that, with workers losing jobs, suffering financial hardship, and experiencing illness and isolation, it was imperative for people of color to have a space to gather and support each other without the harassment and racism they experience on mainstream platforms. Ethel’s Club, named in honor of Austin’s grandmother Ethel Lucas, the matriarch in a tight-knit Black community whose home and kitchen were gathering places, went digital in the spring of 2020 and introduced a $17 monthly subscription (membership fees had been $65 or $195 a month depending on features) that includes thrice-weekly events featuring Black and Brown wellness professionals, caregivers, writers, artists, therapists, teachers, and more. Conversations about systemic racism and police brutality that dominated headlines following George Floyd’s death brought many to the platform, which has a national membership of over 1,000. The majority are millennials, but Gen Zs and a 50+ crowd are also on the platform.

“We have been able to be in the right place at the right time,” said Austin.

She also launched the site Somewhere Good, an offshoot of Ethel’s Club that connects people of color based on their interests and identities. You’re invited into small groups (Austin says it’s like being invited to a very intimate dinner party) and the platform creates a timeline and newsfeed that’s curated from the select communities you decided to join.

The platform has a strict, zero tolerance policy against discrimination and harassment, and limits users’ ability to post on someone’s feed. Members are allowed to follow others only after they’ve had multiple interactions. “This makes it more real,” said Austin. You wouldn’t follow someone around in real life after meeting them once; the policy encourages people to get to know one another.

Somewhere Good also connects members to black-owned businesses and services, from skincare and clothing to podcasts and galleries. The rest of the Internet was not built with people of color in mind, but this platform is, Austin said. “There’s a new urgency to have every aspect of your life reflect your ID,” she said.

Mai Ton, tech industry HR executive

Mai Ton, tech industry HR executive

New Yorker Mai Ton has been a senior human resources executive in the tech industry for a decade, and is used to being the only woman, and minority, in a room full of white men. She joined Chief, a social club and network for high-level executive women, for one simple reason. “I got tired of never being among women and only being around men,” she said.

Chief, founded by Carolyn Childers and Lindsay Kaplan, both former senior level executives at e-commerce companies, launched in 2019 with the opening of a private club in New York’s Tribeca neighborhood. With a mission to connect and support senior women leaders, Chief filled a void and took off, garnering more than 2,000 members from top U.S. corporations, with several thousand more on a wait list. Only executive women or rising vice presidents can apply to join (or be nominated by existing members). Childers and Kaplan have raised $40 million in venture funding. Membership costs $10,000 a year (members’ employers often pay the fee).

When the pandemic hit, Chief shifted to all online services and events—monthly peer group meetups, leadership workshops, presentations by industry icons, and one-on-one coaching. Members can chat on a community platform with over 40 channels on topics like diversity and women in tech.

“I’ve gained a lot of connections and comradery that I wouldn’t have otherwise,” said Ton, chief people officer at Kickstarter. “Members are very seasoned women who have made it in their careers and want to help others.” Chief pairs members with a core group of about eight people, led by a professionally-trained coordinator, who meet monthly to discuss work issues and get feedback and advice. Ton said she worked with a coach who helped her get “unstuck” on an issue, and garnered four new clients, whom she met on Chief, for her consulting business. “This is your tribe. It’s like having a small group of advisors,” she said. “We utilize and help each other.”

Alexandria Noel Butler, Sista Circle founder.

Alexandria Noel Butler, Sista Circle founder.

While working as a project manager at Airbnb, Alexandria Noel Butler was grappling with how to be more direct with co-workers after receiving feedback from a good friend, who happened to be a white male colleague, about her management style. His advice was: don’t mince words, just be direct and don’t worry that people may not like it. “I said, I can’t do that,” Butler remembers. “I’m a dark-skinned, curly-haired Black women, and I can’t walk into a room and talk to people the way he talks to people.” She had to figure out her own way of being direct, as a Black woman working at a mostly white male company. What she wanted was advice and feedback from other Black women managers. But this is Silicon Valley, which employs very few people of color. A recent study from San Jose State University revealed that ten large tech companies in the valley had no Black women employees (the report didn’t name the companies).

“I had to find someone who looks like me and shares my experience,” said Butler, senior program manager for data and privacy at Twitter. So, in 2017 she started a Facebook group called Sista Circle: Black Women In Tech. It started with a few of her friends who also invited their friends. Butler’s goal was to create a safe space online where Black women in tech can make connections and network, but also discuss the challenges and struggles of being a woman of color in Silicon Valley. Now, almost four years since it launched, Sista Circle has 7,700 members from around the world. It’s a sounding board and gathering place for Black women in tech, with discussions about work, life, relationships, kids, you name it, says Butler, now a senior program manager at Twitter and speaker and advocate for women in tech.

“Sista Circle helped me be more honest and helped me figure out how to have difficult conversations,” she said. “It’s given me permission to be myself. That’s what I hope this community gives other people.”


Karen+Gullo+for+Seismic+Sisters.jpg

Karen Gullo is a freelance writer and former Associated Press and Bloomberg News reporter covering technology, law, and public policy. She is currently an analyst and senior media relations specialist at Electronic Frontier Foundation (EFF) in San Francisco.


*This list of networks, organizations or social media platforms (the “Platforms”) is for entertainment, education and reference purposes only.  Seismic Sisters and the author do not guarantee or endorse the Platforms. Seismic Sisters is in no way affiliated or “materially connected” with the Platforms. Seismic Sisters has no responsibility for any of the Platforms’ operations and services or influence over any of the Platforms’ independent content and public commentary. Use the Platforms at your own risk.

Commander Zoe Dunning, Who Helped Overturn the Ban on Gays in the Military, Continues to Lead in Battles Against Discrimination and Inequality

By Karen Gullo

Zoe Dunning, U.S. Navy Commander (ret.), LGBTQ Activist and Veterans Advocate. Photo by Tumay Aslay / Seismic Sisters

Zoe Dunning, U.S. Navy Commander (ret.), LGBTQ Activist and Veterans Advocate. Photo by Tumay Aslay / Seismic Sisters

Zoe Dunning went to the U.S. Naval Academy in Annapolis straight out of high school, excited to learn what it’s like to be a leader. She didn’t know back then that she would go on to help lead a civil rights movement that would change not only her life, but how the U.S. military treats gay and lesbian service members, and allow tens of thousands of LGBTQ people to live authentic lives while serving their country.

Next month is the ten-year anniversary of a historic ceremony where President Barack Obama signed the repeal of the Don’t Ask Don’t Tell policy, a 1993 law that banned openly gay men, lesbians, and bisexual people from serving in the military. Dunning, now a senior consultant at women-led Future State, activist and Board President of the civil rights group Wall of Vets, was there for the ceremony on December 22, 2010, standing to the left of the president, beaming in a brown pants suit, her cropped red hair swept to the side. The journey that took her there was a years-long fight against discrimination, harassment, and government lawyers who sought to discharge her from the Navy after she decided that she would no longer allow the government to force her to keep secret who she was: a lesbian naval officer.

“It came at an incredible cost,” Dunning said of the years she had to hide her sexual orientation, “to not share my whole self at work, to not be authentic, to diminish who I am in order to serve my country.”

Seismic Sisters founder Kim Christensen recently sat down for a virtual chat with Dunning, who described the incredible path that took her from her hometown of Milwaukee, where she grew up the youngest of seven children with parents who both served in the military during World War II, to her life in the military. A high school athlete and school band member, Dunning later attended the U.S. Naval Academy in Annapolis. While at the Academy she discovered she was a lesbian. After graduating she served six years of active duty as a supply officer on an aircraft carrier in Florida and in Washington D.C. At the time LGBTQ people were barred from the military, so she hid her sexual orientation from her superiors and colleagues.

President Barack Obama signs the Don't Ask, Don't Tell Repeal Act of 2010 during a ceremony at the Interior Department in Washington, D.C., Dec. 22, 2010. (Official White House Photo by Chuck Kennedy)

President Barack Obama signs the Don't Ask, Don't Tell Repeal Act of 2010 during a ceremony at the Interior Department in Washington, D.C., Dec. 22, 2010. (Official White House Photo by Chuck Kennedy)

“If I were to let anyone know that I was a lesbian, I’d be immediately kicked out, I’d lose my scholarship, and lose my opportunity to serve as an officer in the Navy,” Dunning remembers. “I learned how to hide it and how to completely segment my two lives.”

By the time she finished active duty, she was no longer willing to live a lie. She knew fellow service members were being harassed, investigated, and kicked out. It was just too high a price to pay, Dunning said. “It was too hard wondering if this was the day they would find out.”

She transitioned to Navy Reserve duty and went to Stanford Graduate School of Business, where she was ‘out’ and became co-president of the gay and lesbian student group. Dunning still had to keep her military and school lives completely separate so the Navy wouldn’t find out.

Bill Clinton had just been elected president in 1992, and during his campaign he had promised to allow gays and lesbians in the military. Dunning was elated, and LGBTQ community members believed that they would finally achieve equity and the dignity that comes along with being your true self. Before his inauguration, though, Clinton started to backpedal. Gays and lesbians began organizing to protest this betrayal, and by January 1993, just days before the inauguration, a rally was scheduled at Moffett Field near Stanford to protest the ban. The organizer of the rally asked Dunning if she’d like to speak at the rally. “I said oh gosh no, that’s too risky, I don’t want to do that,” she remembers telling him. But as soon as she hung up the phone, she began to question her decision. Few in the LGBTQ community of service members had been able to speak out about the policy—they were largely absent from the discussion because talking about it meant losing their careers. Everyone else was talking about it—elected officials, gay rights activists, and attorneys, everyone except those who were affected by the policy.

Dunning spoke at the rally. “I am both a naval officer and a lesbian, and I refuse to live a lie anymore,” she told the crowd.

 

Watch our interview with Commander Zoe Dunning on the Seismic Sisters Show!

 

The Navy took swift action. It started proceedings to oust her, not once but twice. The first time came right after the speech. Dunning was found “guilty” of being a lesbian and was recommended for discharge. While her discharge was in process, President Clinton announced the “Don’t Ask Don’t Tell” policy; the Navy decided to try her again under that policy. Ironically, in between the two hearings, the Navy selected Dunning for a promotion to lieutenant commander.

“On the one hand they were trying to kick me out, and on the other hand they were promoting me,” Dunning said.

After a two-and-a-half year legal battle, Dunning won in the second hearing, but the victory was bittersweet. She could remain in the Navy. However, she couldn’t sue the government in federal court to challenge the constitutionality of the policy, and the legal arguments her lawyers used to win the case were barred from future cases. And so many others were still forced to live a lie.

“I saved my career, but under Don’t Ask Don’t Tell there were 13,000 service members who lost their careers,” Dunning said. “What could I do to make a difference, how can I change this?” So she continued working to overturn the gay ban in the military, joining the Servicemembers Legal Defense Network, which provided free legal help to service members affected by Don’t Ask Don’t Tell, lobbying in Congress, fundraising and public speaking.

Dunning remained on Navy Reserve duty and with a business degree from Stanford she worked as a management consultant. For 13 years she was the only openly gay person in the military. She retired from the Navy in 2007.

Barack Obama made a campaign promise while running for president in 2008 to repeal Don’t Ask Don’t Tell, and he didn’t go back on his word. In 2010, nearly 18 years after coming out in her historic speech at Moffett Field, Dunning was invited to attend the presidential signing ceremony in Washington D.C. “It came to that moment where I was standing next to the president of United States,” Dunning recalled. A bit of jokester, Dunning watched Obama sign his name on the repeal using 13 pens that would be given away as souvenirs, and worried he would somehow lose track, quipped, “Make sure you spell it right.”

Commander Zoe Dunning sat down for an interview on Seismic Sisters Show. Photo by Tumay Aslay / Seismic Sisters.

Commander Zoe Dunning sat down for an interview on Seismic Sisters Show. Photo by Tumay Aslay / Seismic Sisters.

“It was an amazing moment and a really long, and incredible, and hard journey,” she said.

Dunning has continued to lead efforts to protect the rights of veterans, women, and LGBTQ people. She’s a senior consultant at women-led change management firm Future State, which she joined in 2011. She trained with Emerge, a national organization that trains Democratic women to run for public office, and was elected to the San Francisco Democratic County Central Committee. She was nominated by House Minority Leader Nancy Pelosi to serve as one of 11 commissioners of the U.S. World War I Centennial Commission.

Dunning is passionate about advancing diversity, equity, and inclusion, and has developed implicit bias training and works with companies and organizations to create diversity strategies and foster inclusive workplaces. She’s also committed to working with veterans. California Governor Gavin Newsom appointed Dunning to the California Veterans Board, which advocates for vets and their families and works with the state to assess their needs and ensure they are receiving services and benefits. Dunning is also on the advisory board of VetsInTech and leads the women’s initiative at the organization which helps veterans pursue careers in the technology sector.

Two decades after leading the fight for LGBTQ people to serve openly in the military, Dunning is ready to lead another effort to fight discrimination and defend civil rights. This summer she assembled a multiracial group of veterans in just 12 hours to protect and assist Black Lives Matter (BLM) demonstrators in Oakland protesting the killing of George Floyd. She leads the Oakland chapter and is Board President of Wall of Vets, a national group she joined with other vets after Americans watched horrifying images in July of police at BLM protests in Portland tear-gassing a Wall of Moms group and beating Navy veteran Christopher David. His crime? He asked officers in military gear why they were violating their oath to support the Constitution.

Dunning knows what it’s like to be an outsider, to experience discrimination, and wanted to do something to support Black Lives Matter. She thought veterans, who take an oath to support and defend the Constitution, could protect protesters—Americans exercising their constitutional rights to free speech and assembly—by serving as a physical wall between them and police misconduct. Wall of Vets’ motto is “our oath never expires.”

“We want to be there,” Dunning told Seismic Sisters, “to protect those rights and amplify the voices of BLM and those who are speaking out against these injustices.”  


Karen Gullo for Seismic Sisters

Karen Gullo is a freelance writer and former Associated Press and Bloomberg News reporter covering technology, law, and public policy. She is currently an analyst and senior media relations specialist at Electronic Frontier Foundation (EFF) in San Francisco.

Activist and Media Maker Alice Wong Brings Us Moving Stories by Disabled Writers

By Karen Gullo

Touring the Deep South, a young Muslim woman visits Elvis Presley’s birthplace on a hot, humid day in Mississippi. The visit happens to occur during Ramadan and normally she strictly abstains from food and water until sundown (though she’s not required because she has a disability). But there was something about being in Elvis’ place that made it OK to break the fast. “I did not want to die where Elvis was born,” she explains.

A Black woman in the Midwest takes a job running an organization that helps disabled people live independently, despite warnings from friends that the place was a “lost cause.” She remembers being called a “lost cause” because of her autism, and struggled for years to hold down a job. But she rejects the warning and goes to work, turns the organization around, decides to run for state office, and is elected to the board of a national nonprofit, the first disabled person to hold an executive position there. “Lost cause, indeed,” she says.

These are snippets from just two of the intensely personal contemporary narratives in Disability Visibility: First-Person Stories From The 21st Century, an anthology compiled and edited by disability activist, media maker, and consultant Alice Wong. Raw, compelling, funny, and always deeply moving, the stories reveal struggles and triumphs of 37 writers and activists with disabilities who grapple with living everyday lives in an ableist society that often sees them as different and flawed.

Alice Wong - Disability activist, media maker, and editor of “Disability Visibility: First-Person Stories From The 21st Century.” Photo credit: Eddie Hernandez Photography

Alice Wong - Disability activist, media maker, and editor of “Disability Visibility: First-Person Stories From The 21st Century.” Photo credit: Eddie Hernandez Photography

It’s a struggle familiar to Wong, whose drive and belief in herself and her community has made her a leading voice advocating for disabled people in culture, society, politics, and literature.

“Staying alive is a lot of work for a disabled person in an ableist society, and that work has been a big part of my forty-six years on this planet,” Wong says in the book’s introduction.

Wong is the founder of the Disability Visibility Project in San Francisco, an online community about disability media and culture. No coincidence that the organization, which she runs herself, is also the name of the new book, illustrating the deep connection between the book’s celebration of the voices of writers who are disabled and Wong’s experience.

Born in a suburb of Indianapolis to Hong Kong immigrants, Wong has a neuromuscular disease that results in muscles weakening over time. She gets around in a powered wheel chair, and is dependent on a ventilator to breath and attendants to assist in everyday tasks like eating, dressing, and bathing.

As she told Vox in April, people are freaking out about health risks during the COVID-19 pandemic, but she and other disabled people have been living all their lives with uncertainty and have experience adapting to a health crisis—they’ve always had to adapt because the world “was never designed for us in the first place.”

She started Disability Visibility in 2000 as a one-year oral history campaign in partnership with Story Corp. It’s grown into an online community on disability media and culture, broadcasting podcasts, interviews and radio stories, hosting Twitter chats, and publishing essays about ableism and politics from the perspective of disabled people.

Wong’s advocacy for the rights of the disabled has been recognized by Time magazine, which this year named her as one of 16 people fighting for equality in America, and by Bitch Media, which named her one of 2018’s top 50 impactful activists in pop culture. In 2015 Wong was invited to the White House by President Obama for a celebration of the 25th anniversary of the Americans With Disability Act (ADA). She could not attend in person. Instead, she met the president using a telepresence robot, whose movements she controlled via her computer at home while her face and voice were projected on the robot’s “head”—a computer screen.

Wong has been speaking out frankly, and angrily, about COVID-19 and policy conversations about who deserves care as the pandemic spreads and creates competition for ventilators, masks, and hospital beds. Early in the pandemic, some states were drafting care guidelines that could lead to people with autism and other intellectual disabilities being denied access to lifesaving care.

Doctors treating COVID patients might look at the health history of a disabled person and decide that others with a better shot at survival are more worthy of getting a ventilator, Wong posits.

“I am angry seeing so many people outdoors not wearing masks or social distancing,” she said in a telephone interview. “They are going to create more infections, and more deaths,” and make it more difficult for high risk people to stay safe.

Disability Visibility, published by Vintage Books, an imprint of Knopf Doubleday Publishing Group, was released June 30 in time for the thirtieth anniversary of the ADA. “These stories do not seek to explain the meaning of disability or to inspire or elicit empathy,” Wong says in the book’s introduction. “Rather, they show disabled people simply being in our own words, by our own accounts.”

“Disability Visibility: First-Person Stories From The 21st Century” edited by Alice Wong and released in 2020. Book cover by Madeline Partner.

“Disability Visibility: First-Person Stories From The 21st Century” edited by Alice Wong and released in 2020. Book cover by Madeline Partner.

The book features essays, blog posts, Congressional testimony, and eulogies by writers who have very unique but also interconnected takes on life as disabled people in the U.S. Anna Kaufman, who edited the book for Vintage, calls the book an “urgent, vital call to arms.”

“These stories show how diverse the disabled community is, and that so many of the issues at hand are astoundingly intersectional -- there's something for everyone, and that affects everyone,” Kaufman said by email.

Contributors include Jeremy Woody, who was incarcerated in a Georgia state prison, and writes of the discrimination he experienced as a deaf prisoner in a system that offered no accommodations. “Prison is a dangerous place,” he writes, “but that’s especially important for deaf folks.”

Standup comic, actress, and activist Maysoon Zayid, in “If You Can’t Fast, Give,” says her cerebral palsy, which makes her shake “like Shakira’s hips,” finally forced her to stop fasting during Ramadan, a practice she misses dearly. Fasting is important, she says, but “it’s important not to die in the process.”

“I have participated in several other projects that highlight disabled voices, but the editors and decision makers did not identify as disabled and the compilation suffered because of it,” said Zayid in an email. “This anthology really does our community justice and serves as a great resource to our non-disabled audience so that we can stop educating them on Twitter.”

Throughout the book, contributors talk about being made to feel like they are people who are broken, in need of fixing, people who should be seeking a cure, a new medicine or therapy that will make them able. Through struggle and with courage, they write of rejecting the boxes they are put in and realizing that the mindset that identifies disabled people as broken is itself a sign of a society’s lazy disinterest in seeing them as people who are simply part of a world of diverse human beings.

“I felt like a piece of clockwork waiting to be fixed,” writes June Eric-Udorie, a journalist and activist who writes in the anthology about her life as a young woman of color living in London. Eric-Udorie was born with a congenital condition that causes her eyes to move involuntarily and partial blindness. Attending church at 15, her grandmother tells her to put the communion hosts soaked in wine on her eyes so that she can be cured. She was brought to many doctors, none able to cure her.

Nearing adulthood, Eric-Udorie writes, she goes by herself on a trip to Bath to see if she can overcome a fear of being independent, and “move through the world on my own terms.” Nothing bad happened on the trip. “I felt like a winner” sitting at a café on her own, she writes. Later, in London, she still attends church, not as someone “with a heart that is begging for the most special part of me to change,” she writes. “I come to church free. I come to church knowing that I am not a mistake waiting to be fixed.”

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Karen Gullo is a freelance writer and former Associated Press and Bloomberg News reporter covering technology, law, and public policy. She is currently an analyst and senior media relations specialist at Electronic Frontier Foundation (EFF) in San Francisco.