How We’re Silenced—and the Power of Judy Heumann

 Judith Heumann, left and Kristen Joiner. (Rick Guidotti)

Judy Heumann isn’t nice.

Let me be clear.

Judy Heumann, one of the most transformative disability rights leaders of our time, is very friendly. Just take a walk around her Washington, DC, block. You’ll see that she’s on a first-name basis with everyone, from the doorman to the bus driver.

But she is not nice.

For the past three years, I’ve had the privilege of waking up and imagining myself into Judy Heumann’s shoes. I co-authored her story, Being Heumann: An Unrepentant Memoir of a Disability Rights Activistand as a nondisabled person, I’ve learned—and am still learning—an enormous amount about life with a disability.

Equally important—despite having spent my entire career leading NGOs and working for social change—I’ve also learned an enormous amount from Judy about activism.

Judy Heumann became a quadriplegic from polio at the age of one and grew up in 1950s Brooklyn—an era known for locking disabled people in institutions, segregating them into inferior special education programs and shunting them into sheltered workshops as a proxy for “employment.”

People with disabilities, stigmatized and ignored, were considered a burden. In the face of this discrimination, Judy became an activist for disability rights. 

In 1977, she and others led 150 disabled people into the San Francisco Federal building and refused to leave until the Carter administration enacted the first civil rights legislation for disability. This protest, the Section 504 Sit-In, is recognized now as the longest takeover of a federal building in US history. It paved the way for the American Disabilities Act

In other words, Judy is a badass.

Judy speaks the truth. Unapologetically. Now, in case you don’t know good-girl lexicon, speaking the truth unapologetically is not considered nice. Nice is what girls are asked to perform to be considered desirable. Nice girls are soft, compassionate and, above all, agreeable. Nice girls don’t complain, have needs, ask for what they want, say no, get angry, refuse to do something, or make a fuss. Nice girls apologize when they get the wrong drink order.

Nice, however, is not just about gender: It is about power. 

When interacting with people with less power, sociologists have noted, people with power expect the less powerful to display considerate, cooperative and nice behavior.

When they don’t, people with more power aren’t just surprised—they’re annoyed and, even more, threatened. Not acting nice toward people with power is an inherent challenge to their privileged status.

When Judy and the protesters first rolled into the San Francisco Federal Building, they were offered punch and cookies as if they were children. But when they refused to leave the office, they suddenly became a threat.

Overnight, they flipped to being called “an army of cripples” by the media, holding the potential of violence.

For people trying to remain in the nice box, there is no recipe for addressing any kind of inequity, discrimination or blatant wrong. When people with less power speak up, the easiest way to shoo us back into our box is to ignore or diminish us into silence.

When a high-level funder sexually harassed me on a trip, the colleague I was traveling with dismissed it, said, “He didn’t mean it, I’m sure you’re mistaken,” and chuckled.

I got it and, as a twenty-five-year-old entry-level employee, shut up. When dismissed, the burden is on us to navigate a landmine of social norms nicely.

When President Trump called Greta Thunberg an angry little girl, he was trying to pull this lever. Nice, by definition, doesn’t insist on being heard. If we speak up or push to be heard, we’re policed, often with shame, bullying, and exclusion.

As a woman with a disability, Judy has repeatedly been shamed, bullied and excluded. The outrageous situations she’s been forced to confront are nothing short of dehumanizing.

In response, however, she has always refused to be silenced.

And when she refused to be silenced, she stepped out of the nice box and never went back.

Writing Judy’s story, this is what I’ve learned: There is no path to challenging abusive societal norms that allows us to stay in the nice box. Speaking the truth about and taking on the wrongs of the world is never going to be nice. It is always going to be about challenging and dismantling power structures, and privilege will do anything it can to shame, bully and exclude truth-tellers.

Talking about being a victim of sexual assault, being discriminated against, being violated—none of it is nice. The dehumanization of people is ugly business. Period.

Of course, the idea of not playing by the rules of social norms is hard. We are human, after all. We want to be liked. We want to meet social expectations because they make us feel like we belong and, if you’ve ever been a teenager, you’ve certainly been shamed, bullied, or excluded for breaking the strict rules of gender norms, white privilege, ableism, and the list goes on. It’s scary.

But I’ve also learned that once you step out of the nice box, you’re not alone. Suddenly, you realize there are all these other people out there who are also tired of being told who they should be, tired of being told how they are wrong, tired of inequality, privilege and power.

When Judy gave up on trying to be what the world told her she should be, she found her people on her own terms.

Together, they created a disability community characterized by acceptance and authenticity. And when they reached across movements, they connected with other marginalized groups, like the Black Panthers and the Butterfly Brigade.

And with those allies, they took on the power structure and changed the world.

Judith Heumann is an internationally recognized leader in the Disability Rights Independent Living Movement. Her work with a wide range of activist organizations (including the Berkeley Center for Independent Living and the American Association of People with Disabilities), NGOs, and governments since the 1970s has contributed greatly to the development of human rights legislation and policy benefiting disabled people. She has advocated for disability rights at home and abroad, serving in the Clinton and Obama administrations and as the World Bank’s first adviser on disability and development. Connect with her on Twitter (@judithheumann) and Facebook (TheHeumannPerspective).

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Kristen Joiner is an award-winning entrepreneur in the global nonprofit and social change sector. Her writing on empowerment, inclusion and human rights has been published in numerous outlets including the Stanford Social Innovation Review. Connect with her on Twitter (@kristenjoiner).