Author: Alex Daniels | Date: 12 January 2019
A microphone in Jennifer Laszlo Mizrahi’s hands is a powerful weapon. At venues across the country, Mizrahi has used her strong, clear voice to ask foundation leaders variations of one simple question: Why aren’t people with disabilities included?
As large foundations have placed more muscle behind programs that promote equity in terms of race, wealth, gender identity, and sexual orientation, Mizrahi believes people with disabilities have been overlooked.
During question-and-answer sessions at major foundation gatherings, she is the first with her hand up, ready to put foundation leaders on the spot. Why isn’t a foundation’s website accessible to the blind? she’ll ask. Or why isn’t data on disabled voters included on a conference speaker’s chart of voting patterns among residents of rural areas, African-Americans, and young people?
The reason for the neglect, she says, is that disability groups have too often come to foundations looking for charity. That strategy is rooted in the idea that donors should take pity on people who are blind, have dwarfism, or are intellectually challenged, she says, rather than treating discrimination against them as a violation of their civil rights.
"The overall messages of the disability community caused us more harm than good," she says. "The more they were repeated, the more harm was done."
Through RespectAbility, an organization she co-founded five years ago, and through her own philanthropy, Mizrahi has pushed to eliminate stigmatization and to reduce barriers to employment for people with disabilities.
Sometimes her approach is direct, such as when she called Darren Walker, president of the Ford Foundation, a "hypocrite" in an email for not including disabilities in the grant maker’s shift to focus entirely on equity. After that, and with the input of lots of others in addition to Mizrahi, Walker issued a mea culpa and announced that Ford would work to address inequalities based on disability throughout all of its programs. Mizrahi now calls Ford’s response the "gold standard."
Donn Weinberg, executive vice president of the Harry and Jeanette Weinberg Foundation and co-founder of RespectAbility, said Mizrahi is "fearless" in asking difficult questions of foundation honchos. When she’s able to get face-to-face with philanthropy executives at conferences, she seizes the opportunity to educate them about disability issues.
Some nonprofit leaders grumble privately that Mizrahi sometimes claims credit for efforts that were already underway. And sometimes her questions come in the form of short lectures.
At a Philanthropy Roundtable conference in 2017, the group’s staff asked Weinberg, who also serves as Philanthropy Roundtable’s chairman, if he could persuade Mizrahi to tone down her rhetoric and get to the point. "She clearly wants people to hear a bit of commentary before the question," he says. "She’s planting seeds of thought and bringing to people’s consciousness an issue they often don’t think about."
But Mizrahi doesn’t see herself as a provocateur or a grandstander. She consults directly with nonprofit leaders to make sure their websites, grant applications, and program strategies benefit and are accessible to people with disabilities.
She’s created a set of guidelines and tools for organizations that want to gauge whether they are being inclusive. And she dispatches young professionals and students working as RespectAbility fellows to interview foundation employees about how they communicate with, employ, and benefit the disabled population.
"We try to call people aside and not call them out," she insists, saying most of her work is done in private consultations with foundation leaders, not in the public spotlight. "I like to see myself as a partner, a facilitator, and a resource."
Aaron Dorfman knows from experience.
Mizrahi said her annual-dues statement from Dorfman’s group, the National Committee for Responsive Philanthropy, sold the organization as a social-justice champion — but something was missing.
"They were very proud to send me a 12-page, single-spaced memo on diversity, equity, and inclusion," she says. "The word ‘disability’ wasn’t in it."
The two met for coffee to discuss the matter. Afterward, as the committee was preparing to release a guide for foundations interested in social justice, Dorfman asked Mizrahi to analyze a draft to make sure it adequately covered disability.
Dorfman said he welcomed the challenge. By putting foundation leaders on the spot at conferences, Mizrahi is helping philanthropy see its shortcomings and grow.
"There’s a certain amount of discomfort when you get called out, even if you get called out rightfully," he says. "This culture of politeness doesn’t serve marginalized communities well. It’s all right to make someone feel uncomfortable in pursuit of full inclusion."
Diversity Includes Disabled People
Some foundations recognize they need help. A survey of 205 foundation chief executives conducted by the Center for Effective Philanthropy found that most leaders thought their organization was staffed by people with a diversity of backgrounds and served a diverse set of beneficiaries in terms of race, gender, and sexual orientation. But over half said they fell short when it came to people with a disability.
The reason, according to Judy Belk, president of the California Wellness Foundation, is many people think the Americans With Disabilities Act, passed in 1990, cured injustices faced by disabled people.
The existence of handicapped parking places and curb cuts on street corners, Belk says, doesn’t mean all of the challenges have been addressed. Similarly, just because philanthropies have crafted strategies designed to ameliorate inequities doesn’t mean they’ve faithfully put them into practice.
For Belk, concentrating on disabilities could be a good way to achieve progress in some of the foundation’s existing programs, including efforts to improve oral health for low-income adults, prevent HIV/AIDS among women of color, and help women of color adjust to society after being incarcerated. All of the groups that stand to benefit from that work, Belk says, include a large proportion of people with disabilities.
To start, the California Wellness Foundation had RespectAbility audit its website. Mizrahi’s staff found that the grant maker’s web presence wasn’t an inviting place for everyone. Belk ordered a redo to make sure the site complied with content-accessibility guidelines.
"Foundations have diversity, equity, and inclusion statements up the wazoo," she says. "They can show you a statement and say they’re committed. I’d like to push ourselves and hold ourselves accountable."
Foundations have largely failed to incorporate disability into the programs they run and the data they collect, Mizrahi says. And she thinks nonprofits in general have fallen behind businesses and government agencies in accommodating people with disabilities. Though many organizations would like to make progress, they often fear it will cost a lot.
Many fixes aren’t expensive but require presence of mind. For instance, Mizrahi says, it’s free and easy to make Twitter and Facebook feeds accessible and put captions on YouTube videos. And avoiding meetings in places like church basements that aren’t accessible for people in wheelchairs requires the presence of mind to schedule gatherings elsewhere.
Mizrahi says she’d rather educate than scold, and help people understand that people with disabilities are productive team members.
"I don’t view every organization equally," she said. "The Americans With Disabilities Act treats organizations differently based on size and budget, and so do I. If it’s a small, fragile organization with nobody on staff, I have very few expectations they’ll all of a sudden have a personal-care assistant for someone who is a quadriplegic and on oxygen in order to participate in their program."
Nonprofits lack clear guidelines on the steps they should take to make their organizations more accessible, according to Michael Thatcher, president of Charity Navigator. Over the past year, he has been in discussions with Mizrahi about how to encourage charities to get started.
The first step, Mizrahi says, is to help organizations understand what kind of contributions people with disabilities can make.
At a Capitol Hill conference that RespectAbility held in July, Vincenzo Piscopo, the director of community and stakeholder relations for the Coca-Cola Company, told the 200 attendees that people with disabilities are often accustomed to overcoming obstacles and are master problem- solvers. It’s incumbent on people with disabilities in the work force to serve as ambassadors, to help employers understand what they bring to the table.
"When companies have people with disabilities, they’re providing value to their company," he told the gathered crowd. "They’re not doing charity."
Stephanie Farfan is one of those ambassadors. Farfan, a little person who calls herself a "master Googler," was looking for internships specially geared toward disability issues and found RespectAbility online. There weren’t a lot of other opportunities like it.
RespectAbility’s fellows program, which is supported by the Stanford and Joan Alexander and Ford foundations, allows students and young professionals to work in public policy and communications roles and in the organization’s foundation practice.
Before she came to Washington to attend graduate school in international studies at American University, Farfan worked in Florida with Little People of America. A fluent Spanish speaker, her volunteer work with Little People of America often involved talking with Hispanic parents of children with dwarfism.
Coming to RespectAbility, Farfan, who wants to pursue a career at the State Department, has spent much of her time delving into state laws and regulations on disability issues.
"Coming over to the policy side has given me a new perspective," she says. "It’s rounded out my skill set."
‘One Toe in the Water’
Mizrahi’s behind-the-scenes work has resulted in changes in foundation practices. In addition to the National Committee on Responsive Philanthropy and the Belk Foundation, she shared — on the condition that they not be named — emails from several grant makers showing they had incorporated RespectAbility’s suggestions into their website design and broader communication strategy.
While she’d like to keep those successes private, she’s not afraid of publicly criticizing foundations she thinks are lagging behind.
She slammed the Lumina Foundation for not specifically incorporating people with disabilities in its work-force development grants. She said the Bill & Melinda Gates Foundation provided little money to directly support disabilities and did not collect or disseminate data on the progress of students with disabilities in its domestic education work.
"I am deeply disturbed that Lumina and Gates aren’t doing dramatically more," she says. "They are both sort of one toe in the water."
In response, Lumina’s director of strategic communications, Kevin Corcoran, said that while there is "laudable" work being done to ensure people with disabilities succeed after high school, the foundation’s focus was on educational outcomes for students of color. The Gates Foundation said it has been making changes to address the issue, but it did not single out any one person who pushed for the revisions.
In October 2017, Gates "refreshed" its approach to education grant making. Since then, the foundation has said it has begun to disaggregate the data it collects so it can track students with disabilities, and it has begun to support programs to accommodate disabled charter-school students.
"We have already begun to fund research to help us understand how the foundation could best support success, engagement, and transitions for students with disabilities, and we plan to make the results of this research publicly available, via our grantees," the foundation said in a statement.
An Advantage From Dyslexia
Activists have pushed foundations to recognize disabilities in the broader civil-rights context for decades. In the 1980s, Donors Forum, a collective of Illinois grant makers now known as Forefront, had a board meeting to discuss a survey on diversity it was going to send out to members.
Marca Bristo, who was a board member at the time, said there were no questions about disabilities. "They just plain forgot about it," says Bristo, who is president of Access Living, a Chicago disability and housing advocate.
More recently, Bristo has noticed a desire among large foundations to learn more. Before the MacArthur Foundation awarded $100 million to Sesame Street Workshop and the International Rescue Committee last year as part of its 100&Change challenge, Bristo sat down with the foundation’s president Julia Stasch to figure out how to incorporate inclusion of people with disabilities into the award.
With Susan Sygall, a former MacArthur fellow and CEO of Mobility International, Bristo reviewed the contest’s eight semifinalists and developed a disability checklist that the applicants could use to assess their pitches.
"Leaders from the disability-rights movement have been working on these issues for years," she wrote in an email to the Chronicle. "The work RespectAbility has focused on is critically important but not new. No one organization can do this transformational work alone. The intransigence of stigma, prejudice, and exclusion requires a sustained and collaborative effort by all of us."
Before the winners were named, Mizrahi was instrumental in "amplifying" the work to include people with disabilities, according to Cecilia Conrad, who leads MacArthur’s 100&Change program. Mizrahi consulted with the foundation about what constitutes full inclusion and wrote opinion pieces that highlighted the role of inclusion in the award.
For Mizrahi, becoming an effective communicator didn’t come naturally. As someone with dyslexia, she didn’t begin reading until she was 12 and didn’t achieve functional literacy until two years later. After an early growth spurt, she reached her full, above average, adult height at a very early age. She seemed all grown up, but she was having a difficult time. Adults around her expressed their disappointment in her academic progress, calling her "lazy."
Mizrahi responded to the challenge through intensive work on reading. She expertly honed her listening and speaking skills. Now, she says, when she enters any conversation or debate, her disability has given her a huge advantage.
"Having a disability means there’s something you can’t do in your everyday living. But there’s nothing in the world that says you can’t be the best in the world at something else."