LESSON 9

Nothing about Us without Us

. . . given the right circumstances, being different is a superpower.

—GRETA THUNBERG

If the social conditions are disabling, then the culture will be disabling.

—CARMEN PAPALIA

Disability history and culture isn’t recognized or documented in our society, and yet we’re everywhere. You just have to notice.

—ALICE WONG

What Barb Goode Taught Me

“LIBERATORS,” NO MATTER how benevolent or loving, can never complete someone else’s liberation. That must be done by the person himself or herself.

Just after landing my first full-time job as a disability advocate, I was invited to a national board meeting where I witnessed an intense discussion led by Barb Goode.¹ She was a founder of People First, an organization of people with developmental disabilities who wanted to be recognized as capable of speaking for themselves. Goode spoke softly and plainly. There was an aura of quiet authority about her. It was clear that she wasn’t going to back down, however respectful she might be. She and her People First colleagues wanted the board to finance their intervention in a court case to prevent a young woman known as “Eve” from being sterilized against her consent. Goode said the issue was personal—they feared the same thing could happen to them. To my surprise, many on the board were resistant. These were parent leaders I admired, yet they seemed unwilling to support the request.

Goode and her colleagues eventually received enough support to get started. They spent the next seven years instructing lawyers as the case wound its way to the Supreme Court. The final decision was unanimous. Neither Eve nor other adults with developmental disabilities can be sterilized without their consent. That decision later influenced the UN Convention on the Rights of Persons with Disabilities. The Convention stated that people with disabilities are full persons before the law and free to make their own decisions regardless of cognitive ability.

In the end, that board discussion wasn’t about money; it was about the unwillingness of some people to accept that people with developmental disabilities are capable of representing themselves. I didn’t know it at the time, but Barb Goode was following a path to democracy that goes back to the 1500s. That was when the phrase “Nothing about us without us” became a motto for political movements that were wresting power from monarchs. A variation of that phrase, “No taxation without representation,” planted the seeds for the American Revolution. “Nothing about us without us” was revived by disability activists in the 1990s. The phrase is used nowadays by consumer groups, patient advocates, and populist movements.

The freedom to represent yourself is always claimed, never granted. That’s because power is a habit, and few people like giving it up, whether or not they are conscious of their resistance. I’ve noticed that there are usually three stages to meaningful participation in decisions that affect you. The first is getting a seat at the table, which isn’t easy when you don’t know that there is a meeting in the first place or haven’t been invited. It’s no wonder that this stage of advocacy is often characterized by anger and outrage. The second stage is going through the door once it has been cracked open and meeting with the people who, up until then, you considered the enemy. Trust is usually pretty low, particularly in the beginning. Advocates are often haunted by fear—fear that they might inadvertently give something away and let down their constituency. This stage is further complicated if the building and the room are inaccessible. The third stage of representation is having the power to set and influence the policy agenda—an agenda based on your definition of the problem to be solved, not one predetermined by the system or institution. An ally is someone who understands the difference.

The people profiled in this lesson know how to maneuver effectively through these three stages. They’ve learned the basic ingredients of democratic decision-making, which include exercising power with love, cultivating trust, and laying top-down institutions on their side. Many are accidental activists. One is a powerful politician. They are proof that the disability movement has justice seekers as powerful as Rosa Parks and Martin Luther King Jr.

My wish is that we consider our role as citizen to be just as important as our other roles of worker, consumer, creator, volunteer, friend, partner, and parent. That we regularly flex our democratic muscle and support groups that have been excluded to do the same, even if that means moving to the background. Politics pervades everyday human life. It’s not just some things that are about us. Everything is about us. Every one of us.

Climate Striking GRETA THUNBERG

Nothing about climate change without young people.

Greta Thunberg began her school strike for the planet in August 2018, skipping school and sitting outside the Swedish Parliament every Friday on her own. Thunberg has said that she is shy and not good at socializing; otherwise she would have started an organization. By the end of the year, she was named one of the most influential teenagers in the world by Time magazine. She is described as the moral voice of a generation, a generation that is prompting older generations to take action to resolve our climate crisis. At the United Nations Climate Change Conference in December 2018 she told attendees, “You are not mature enough to tell it like is. Even that burden you leave to us children.”² Around that same time, she revealed that she had been diagnosed with autism, obsessive-compulsive disorder, and mutism. She credits her autism for her ability to speak clearly and only when necessary.

Thunberg also speaks precisely about the numbers of students, schools, and countries participating in the climate strikes that she initiated. As I was finishing this book, the numbers were 1.5 million students in 2,083 cities in 125 countries. She is equally detailed about the dangers of global warming and climate change. To avoid catastrophe, the world has to reduce carbon dioxide emissions by at least 50 percent by 2030 in order to prevent a 1.5-degree increase in global warming, she says. “We live in a strange world where children must sacrifice their own education in order to protest against the destruction of their future,” she told an audience in Berlin. “Where the people who have contributed the least to this crisis are the ones who are going to be affected the most.”³

Thunberg was bullied at school, so she was prepared for the insults she has received. She has been mocked publicly for her disability. She’s been called retarded, a bitch, and a terrorist. “I expected when I started that if this is going to become big, then there will be a lot of hate,” she said in an interview.⁴ Others have accused her parents of writing her material. Not so, says Thunberg. “My parents were as far from climate activists as possible before I made them aware of the situation.”⁵ Still others have said that she is too young to be protesting. Thunberg, who was born in 2003, agrees. “We children shouldn’t have to do this. But since almost no one is doing anything, and our very future is at risk, we feel like we have to continue.”⁶

Independent Living ED ROBERTS

Helping others without making them dependent on you is liberating.

When Ed Roberts applied to the University of California, Berkeley, in 1962, one of the deans responded, “We’ve tried cripples before and it didn’t work.”⁷ Those were fighting words to a young man who had overcome his fear of being stared at after contracting polio as a sports-loving teenager—who had given up thinking of himself as a “helpless cripple” and saw himself as a star. Roberts was admitted to Berkeley because other administrators overruled the dean. It was 1962, just before the Free Speech Movement made Berkeley into a center for student protests. Other students who used wheelchairs soon followed. They described themselves as the “Rolling Quads.” They created the first Center for Independent Living in Berkeley. Roberts became the father of the independent living movement. He described independent living as a psychological idea as much as a physical idea. “We needed to change our attitudes about ourselves,” he said in a documentary about him. “Be proud of who we were and what we are, and go out and change things for others and for ourselves.”⁸

Roberts said that there was nothing in life if you were not in control of what happened to you. “I’m tired of well meaning noncripples with their stereotypes of what I can and cannot do directing my life and my future. I want cripples to direct their own programs and to be able to train other cripples to direct new programs. This is the start of something big—cripple power.”⁹

In 1976, California’s governor, Jerry Brown, appointed Roberts state director of rehabilitation, the same department that had refused to help him go to college. He went on to receive a MacArthur genius grant and to create the World Institute on Disability, a think tank on disability policy in the international arena. The secret of his success was working with other people, “moving away from your own problems to help somebody else.”¹⁰ He said that helping others liberated him. “It made me a lot freer to help myself.”¹¹

Roberts died of a heart attack in 1995 at the age of 56. Today there is an Ed Roberts Campus at UC Berkeley. He was inducted into the California Hall of Fame in the same class as Carlos Santana, Magic Johnson, Buzz Aldrin, and the Beach Boys. In 2017, on what would have been his seventy-eighth birthday, he was honored with a Google Doodle. Roberts’ wheelchair is now in the National Museum of American History.

Accidental Activist ALICE WONG

Representation without power is not enough to influence policy and practices.

Writer, media maker, research consultant, and proud Asian American nerd Alice Wong attended a White House reception marking the twenty-fifth anniversary of the Americans with Disabilities Act in 2015 using a BeamPro, a telepresence robot that livestreamed her image into a room and enabled the virtual Alice Wong to mix and mingle with those who were able to make it there in person. She was the first person ever to visit the White House in such a manner, making the point that there are many ways to show up and be counted. She said in an interview that she became an accidental activist because she lives in a nondisabled world, “and surviving in it is a full-time activist occupation.”¹² She is considered a leader among the current generation of disability activists. For followers who are unable to recognize photos or images, she describes herself as an Asian American woman in a wheelchair who wears a mask over her nose with a tube for her BiPAP machine.

She is the founder and director of the Disability Visibility Project (DVP), a vibrant online community that champions disability culture and history, created in 2014. She is a collaborator and partner in a number of projects outside of the DVP. She is a partner in DisabledWriters.com, a resource to help editors connect with disabled writers and journalists, with s. e. smith and Vilissa K. Thompson. Another project in which she is a partner is #CripTheVote, with Andrew Pulrang and Gregg Beratan, a nonpartisan online movement encouraging the political participation of people with disabilities worldwide. One of her latest projects is a campaign called Access Is Love, with Mia Mingus and Sandy Ho. The aim of Access Is Love is to build a world where accessibility is understood as an act of love and a collective responsibility, not the responsibility of a few individuals. “Almost every group can improve the way they include disabled people in their movements,” Wong said in an interview. “I’d like to see disabled people present in all movements and who are in leadership positions with actual power, not tokens.”¹³

Wong’s activism combines penetrating insight and fierce advocacy along with a careful attention to the cultural determinants of change. In that regard, she and her colleagues are reinventing activism for the twenty-first century. They are countering the negative cultural myths associated with disability with their own stories. She wrote an op-ed, “My Medicaid, My Life,” published in the May 3, 2017, New York Times, on how this program affects her life and millions of others’ as Congress attempted to repeal the Affordable Care Act. “I resist the idea that representation is enough when what we really want is power,” she said in an interview—power to influence policies and practices.¹⁴ Wong said that activism comes in many forms and doesn’t just mean showing up at rallies, protests, and marches; online activism is a valuable and legitimate form for people who can’t travel or in some cases can’t leave the house. You don’t have to march to be in the resistance, she said.¹⁵ She encourages people to “do what you can, however you can. All efforts are valuable. And get over yourself!”¹⁶

Wong edited and published the 2018 e-book Resistance and Hope: Essays by Disabled People, which she called “Crip Wisdom for the People,” examining resistance and activism from the perspective of disabled people. She is the editor of a forthcoming book, Disability Visibility, an anthology of essays from 2000 to 2019 by disabled people.

Manifesto for Citizenship CARMEN PAPALIA

Trust is an essential ingredient of democracy, and it grows from the grassroots up.

To performance artist Carmen Papalia, walking is a political adventure that cultivates trust. In Blind Field Shuttle, for example, he leads as many as ninety people with their eyes closed, hands on the shoulders of the person in front of them, on an adventure in darkness. They know he is blind and trust that he will lead them safely to a destination of his choice. In Mobility Device, instead of using a white cane, he uses the sound of a high school marching band as his navigation system. In White Cane Amplified, he walks down unfamiliar streets using a megaphone to ask passersby for their support. He wants to illustrate that the social function of the cane is to prevent people from following their natural inclination to help. Papalia describes himself as a nonvisual learner, a term he chose when a hereditary condition began obstructing his vision. He resists terms such as legally blind and visually impaired. He views the white cane with its signature red tape as an institutional technology that reinforces dependence and victimhood. The one he uses is made of black graphite and has a wooden handle. “The white cane entrusted a sighted community with my care when all I needed was to be supported in learning through my nonvisual senses,” he wrote in an essay.¹⁷

Papalia puts his faith in mutual support and trusting relationships between people with and without disabilities. His insights also apply to the relationships between all citizens and their democratic institutions. He wants to end the top-down nature of institutions because when you take away the structure institutions are, “just this mess of relationships.”¹⁸ He demonstrates this by conducting accessibility audits of art galleries around the world. His aim is for people in power to understand what systemic oppression looks like. It’s one thing to be able to get into a museum, he says. It’s another to feel unwelcome once you get inside and to encounter exhibits that aren’t compatible with the various ways in which you learn. Papalia describes this as a relational approach to accessibility as opposed to the more common rights-based policy approach.

Papalia has worked with New York’s Museum of Modern Art, the Guggenheim, the Harvard Art Museums, the Whitney Museum of American Art, Tate Liverpool, and the Vancouver and Ottawa Art Galleries. He wrote An Accessibility Manifesto for the Arts to foster a creative, reciprocal, and ongoing relationship between citizens and their institutions. Papalia believes that everyone carries a body of local knowledge and is an expert in their own right; he also believes that interdependence is central to a radical restructuring of power and for leveling the playing field. Accessibility isn’t relevant only to people with disabilities, he said; “it is an affirmation of mutual trust.”¹⁹

Disability Rocks HEAVY LOAD

“Nothing about us” means having an ordinary life, including being able to party late.

The British band Heavy Load was described as “possibly the most genuinely punk touring band today.” They are likely the only band in history that had to fight for the rights of their fans to party beyond 9 p.m. The reason: many of their fans were people with learning disabilities and had to leave so that their support staff could be home before their shift ended at 10 p.m. “It’s not very punk to go on at 8:30 p.m.,” said their bass player, Paul Richards.²⁰ Since three of the band members also had learning disabilities, they decided to do something about it. They formed Stay Up Late, a grassroots organization working to ensure that people with disabilities could have an active nightlife. Their website proclaims that they believe people with learning disabilities have the right to stay up late and have some fun.

From humble origins in an assisted living project in Sussex, England, Heavy Load played gigs throughout the UK and Europe and even in New York City. They performed at the Glastonbury Festival twice and wrote the theme music for BBC’s TV series Cast Offs. The 2008 documentary film Heavy Load boosted their career, even though, as singer-guitarist Mick Williams observed, their music “neither improved nor deteriorated.” The reason: “We don’t really rehearse much. It destroys our spontaneity.”²¹ Their last gig was in 2012, when they played London’s Trafalgar Square as part of the city’s Paralympic festivities. They kept it punk well beyond 9 p.m.

Stay Up Late continues. They have published “A manifesto for an ordinary life,” which includes “the right to choose how I spend my time.”²² They also host “(un)Ordinary” conferences where people with learning disabilities and autism tell stories about leading ordinary lives. In 2019, Stay Up Late was selected as one of the top one hundred British changemakers.

Note: In the United Kingdom, learning disabilities is the term used to describe people with developmental disabilities.

The Equality Effect FIONA SAMPSON

Human rights law is a crowbar to pry open justice.

Toronto-based human rights lawyer Fiona Sampson has been described as one of the world’s women revolutionaries along with feminist activist Gloria Steinem, former presidential candidate and US secretary of state Hillary Clinton, and American diplomat Isobel Coleman. Sampson said in an interview that she remembered challenging the stigmatization, discrimination, and inequality she was experiencing from the time she was able to speak.²³ Her disability was caused by the drug thalidomide, which her mother took when she was pregnant. “My interest has been in the experiences of disadvantaged persons,” she said, “and looking for ways to establish a new equilibrium where people on the outside of power can get access to the inside.²⁴

Sampson and her organization the Equality Effect led a team of pro bono lawyers in a successful lawsuit against the Kenyan police force for their failure to protect 160 girls between the ages of three and seventeen from being raped. The court judgment made legal history, providing justice for the 160 girls and legal protection from rape for ten million Kenyan girls. “It was about legal impunity,” said Sampson. “The pharmaceuticals and governments had impunity when my mother was pregnant with me. The rapists in Kenya also had impunity because the police didn’t take the defilement of girls seriously.”²⁵ Activists and lawyers are now using the “160 Girls” judgment as a precedent for protecting girls’ rights in other countries.

Sampson also chairs the Thalidomide Survivors’ Task Group. They are demanding compensation from the Canadian government for its failure to determine that the drug was safe and to compensate for the fact that the life expectancy of a person exposed to thalidomide is ten to fifteen years less than that of the average person because of the wear and tear on their bodies.²⁶ “If it weren’t for my spouse, I would’ve been institutionalized. I couldn’t go to the bathroom, I couldn’t wash my hair, I couldn’t feed myself,” Sampson said in an interview.²⁷ “As a lawyer I learned there are laws that can be used to access justice and to hold perpetrators accountable . . . laws easy to enact and hard to enforce,” she said in another interview.²⁸ This is why the Equality Effect is now working with the law, police, and community on the root causes of sexual violence experienced by girls in Kenya by training police and sponsoring public education campaigns.

Breaking Bad Barriers RJ MITTE

Representation matters in front of and behind the screen.

Breaking Bad was a TV show with a difference. It flipped the usual premise, turning a mild-mannered chemistry teacher, Walter White, into a drug lord. Another reason the show was different was that Walt Jr., the drug lord’s onscreen son, had cerebral palsy (CP). Even more unique is that RJ Mitte, the actor who portrayed Walt Jr., has cerebral palsy himself. According to Marlee Matlin, one of only two actors with a disability ever to win an Oscar, only 1 percent of the roles on the big or little screen include a character with a disability,²⁹ even though about 20 percent of Americans have a disability.³⁰ Further Matlin says only 5 percent of characters with disabilities are actually played by actors with a disability. Even fewer have a speaking role, 0.5 percent, according to a study commissioned by the Screen Actors Guild.³¹ The reason for beating those odds: Vince Gilligan, the creator of Breaking Bad, wanted to honor a close college friend of his who had cerebral palsy and make the character of Walt Jr. authentic.

Since the series ended in 2013, Mitte has been working to change the representation of people with disabilities in front of and behind the screen. He described his difficulty securing new roles: “Every good role and paying role that I was going to get, I was drooling in a wheelchair. That was it.”³² Mitte doesn’t mind nondisabled actors playing a disabled character. He thinks it’s an opportunity for an able-bodied actor to change his or her perception of disability. However, he thinks it should go both ways. “A disabled actor should be able to audition for a nondisabled role,” he said.³³ Seventy-five percent of the cast and crew of Carol of the Bells, a new movie he stars in, have a disability. “It’s extremely important to have accurate portrayals,” he explained in an interview, “I mean especially when it comes to technical things like sign language or mannerisms.”³⁴ Recently Mitte landed a recurring role in the comedy series Now Apocalypse. Similar to his character in Breaking Bad, his character has CP, but it doesn’t define him. His role as a sculptor and love interest does. It takes time to change your mind-set that disability is a weakness, said Mitte. “We shouldn’t try to ostracize someone just by what you think they can’t do but more by what you know they can do.”³⁵

Everything Is about Us CARLA QUALTROUGH

Nothing without us because everything is about us.

Carla Qualtrough isn’t the usual glad-handing politician. She doesn’t recognize people when she walks into a room or a crowd, and she can’t read their name tags, which could be a big deal for someone courting votes. To compensate, she lets people know that she may not recognize them the next time they meet and asks them to take the lead and introduce themselves. Qualtrough has been visually impaired since birth. She has flourished as a medal-winning Paralympic swimmer, as a human rights lawyer, and as Canada’s first minister of sport and persons with disabilities by adapting and accommodating herself to a world designed for sighted people. And that’s what she wants to change.

She wants a world where everyone has an equal chance at success without the onus being on them to make adjustments or to be accommodated only after they’ve filed a human rights complaint. She prefers that people with disabilities use their creativity and energy on other things. “I am the exception to the rule. I am not the rule,” she said in an interview.³⁶ Qualtrough admits that she is not the kind of person who likes to make a fuss or appear too demanding. She has learned that doing so just leaves the system as it is. She’s had to retrain her own brain to expect complete accessibility and not to be apologetic about it. She learned the importance of taking a systems approach when she was a Paralympic swimmer. It helped her realize that it’s possible to design a system for inclusion from the start, not after the fact. “You can’t cut corners,” she said. “Swimming 11 times a week, for 11 years taught me that you can’t cut corners.”³⁷ Which is why she embedded the principle of inclusion in her country’s first Accessibility Act.

As a cabinet minister, Qualtrough has responsibilities that extend far beyond her disability portfolio. She sits at a cabinet table where decisions affecting all Canadians are discussed, which of course include people with disabilities. And she brings her perspective as a woman with a disability to those discussions—even to set the agenda from time to time. That’s why she is suggesting a friendly amendment to “Nothing about us without us.” It is “Nothing without us, because everything is about us.”³⁸

Did You Know . . .

One of the signers of the US Declaration of Independence was Stephen Hopkins, a man who had cerebral palsy. While signing, he said, “My hands may tremble, my heart does not.”³⁹

Did You Know . . .

The English writer and poet John Milton said that he had become blind writing about freedom. He wrote in the 1600s in defense of free speech, and of freedom of the press, religion, and assembly, often by candlelight and knowing he was damaging his eyes. His political ideas influenced writers such as John Locke, whose ideas laid the foundation for the American Revolution. His poem “On His Blindness” concludes with this famous line: “They also serve who only stand and wait.”⁴⁰