Top Quotes: “Being Heumann: An Unrepentant Memoir of a Disability Rights Activist” — Judy Heumann

Childhood

“I never wished I didn’t have a disability.

I’m fairly certain my parents didn’t either. I never asked them, but if I had, I don’t think they would’ve said that our lives would’ve been better if I didn’t have a disability. They accepted it and moved forward. That was who they were. That was their way. They deliberately decided not to tell me what the doctor had advised when I recovered from polio and it became clear I was never going to walk again. It wasn’t until I was in my 30s that I discovered what he’d suggested.

‘I recommend that you place her in an institution,’ he said.

It wasn’t personal. It didn’t have anything to do with our family being German immigrants. Nor was it ill intentioned. I’m sure he sincerely believed that the very best thing for these young parents to do would be to have their 2-year-old child raised in an institution.

In many ways, institutionalization was the status quo in 1949. Parents weren’t necessarily even encouraged to visit their institutionalized children. Kids with disabilities were considered a hardship, economically and socially. They brought stigma to the family. People thought when someone in your family had a disability it was because someone had done something wrong.”

“The story was that a distant relative came from the States to visit my mother’s family in Germany and brought news of the worsening situation. The info convinced my grandparents to send my mother, their one child, away to live with this distant relative.

I’ve often imagined what it must’ve felt like for my mother. You’re 12 years old and one day someone you don’t know, someone you’ve never met before, comes to visit your family and 2 weeks later you’re suddenly gone from Germany forever, living alone in Chicago with unfamiliar people. My mother always thought that her family would be together again. Even during the war, she was working to save money to bring her parents over. Only later did she learn that they’d been killed.”

“So when an authority figure in a new country, a doctor, said to my parents: ‘We will take your daughter out of your home and raise her,’ they never would’ve agreed to it. They came from a country where families got separated, some children sent away, others taken from their families by the authorities and never returned — all as part of a campaign of systematic dehumanization and murder.

Their daughter, disabled or not, wasn’t going anywhere.”

“One of the nearly 43,000 American children affected by the 1949 polio epidemic, I was a quadriplegic.”

“It didn’t occur to them to think it unusual that I joined in all the kids’ games in my wheelchair. Because there was never a question of whether or not I would play, too — we all figured out a way for me to do whatever everyone was doing. Even when we jumped rope or roller-skated, we figured it out. We’d put roller skates over my shoes and I’d pretend to be skating in my chair, or I’d turn the rope for the jumpers or play in some other way. I didn’t know anything different. Now I know that this was the way it was because we were kids, and kids are problem solvers. But it taught me, at a very early age, that most things are possible when you assume problems can be solved.”

“I still remember the day I was 5 and my mother had taken me to register for kindergarten. My mother helped me put on a nice dress, pushed me to school, and pulled my wheelchair up the steps. But the principal refused to allow me to enter.

‘Judy is a fire hazard,’ he said, explaining to my shocked mother how the school system saw wheelchairs as a dangerous obstruction. Children who used wheelchairs were not permitted to attend school. I would stay home.”

“The world thought I was sick.

Sick people stayed home in bed. They didn’t go out to play, or go to school. They weren’t expected to go outside, to be a part of things, to be a part of the world.

I wasn’t expected to be a part of the world.”

“In America, school is considered so important, that, since 1918, it’s been compulsory.

For everyone except us.

Nobody, not the teachers, not the principal, not the NYC Board of Education, expected the special-ed kids to learn. Many didn’t expect us to progress from elementary school, to middle school, high school, university. We were expected to stay in Health Conservation 21 until we were 21, at which point we were supposed to enter a sheltered workshop.

The kids in my class ranged in age from 9 to 21. All of us were forced to rest after lunch. Given how we got pulled from class for physical therapy, occupational therapy and/or speech therapy, our instructional time added up to less than 3 hours a day. Which is partly why, at 18 and 19, Joanie and Jill didn’t know how to read very well.

Not only were we not required to participate in the Amer. system of education; we were actually blocked from it and hidden away in the basement.”

“The freedom we felt at camp wasn’t just from our parents and our need for their daily assistance in order to live our lives.

We were drunk on the freedom of not feeling like a burden, a feeling that was a constant companion in our lives outside of camp.”

“My mother worried that if having me in the program became to difficult, the pastor might decide the effort wasn’t worth it and wouldn’t want me back. My mother straddled a fine line betweeen fighting to not have me excluded and worrying that she’d pushed so hard for inclusion that I’d end up excluded. At Bible school we were lucky. The pastor was the kind of guy who understood that if all the kids were doing something it would be weird for me not to do it.”

“Above all, you did not want your kid to become a burden. Which meant that the parents needed us kids to adjust and accept not participating — and we learned to do this. We accepted that our inclusion was dependent on someone else being ‘nice.’”

“[At camp,] I didn't have to worry that if I wanted to do something or go someplace, I’d have to ask somebody for a favor. I didn’t have to feel guilty about how much work it took me to get dressed and take me to the bathroom. The counselors were paid to do these things for us, which made all the difference in the world. Because the reality is, asking people to do something for you when you’re not paying them or they’re not required to do it in some way means that you’re asking someone for a favor. And doing favors for someone gets old. Favors mean that someone has to stop what they’re doing, whatever it is, in order to help you with what you’re doing, which always feels like an interruption, an intrusion.

At camp I didn’t have to worry about what I needed, or how much help I could ask for at one time. I didn’t have to secretly rank what I needed in order of importance so as not to ask for too much at once. I didn’t have to feel that bad feeling I got when something was inaccessible and someone said no to something I knew I could’ve done myself if my whole world had been accessible.

Camp, I thought, was what it would feel like if society included us.”

University

“I was used to rationing my water intake when I knew there wouldn’t be anyone to help me go to the bathroom.”

“At a time when many women were encouraged to think about going to college only as a potential route to getting their ‘Mrs.’ degree, the message I got was the opposite. I would not be able to count on getting married and having a husband who would take care of me. ‘You need to be able to support yourself, and you aren’t going to be able to support yourself on a high school degree, so you have to go to college,’ my mother would tell me.”

“Through a program originally developed to support returning disabled WWI veterans in finding work, the US Office of Vocational Rehab paid for my college expenses. The Office of Vocational Rehab helped disabled people prep for and obtain employment. Friends had warned me about Rehab’s take on what they considered realistic careers to be for disabled people.

‘Don’t tell Rehab you want to be a teacher,’ my friends told me, ‘because if you tell them that you want to be a teacher, they’ll tell you you can’t because nobody else is a teacher who’s in a wheelchair.’ In other words, if you couldn’t show Rehab that there was someone else who had a disability similar to yours working in a profession like the one you wanted to study for, then they wouldn’t pay for it. So I had to choose a major that would be considered ‘acceptable’ to Rehab which is where the speech therapy came in — and figure out a different route to becoming a teacher.”

“The dorm I lived in had 2 steps into the building, no ramp, and a step into the bathroom — and I didn’t yet have a motorized wheelchair. This meant that every day, every time I had to go to the bathroom, or into my dorm, or to class, I had to ask somebody to help me up the steps, or push me to where I was going. Usually, I tried to get someone I knew to push me, but sometimes I would just ask a stranger. Fortunately, the campus was small, so the lack of access was confined to a small area, one of the reasons I’d chosen LIU. Of course, I was used to asking for this kind of help.

The bigger challenge to living alone in the dorms, however, was in the morning and at night, when I needed help getting my braces on and off, getting dressed or undressed, and in and out of bed.”

“When a black family moved in [the neighborhood], an occurrence to which some of our white neighbors reacted unhappily, grumbling about the neighborhood going downhill, my mother spoke up for the family. She encouraged people to try and see things differently. Although the majority in our neighborhood were still white, and it would be years before the neighborhood would really shift demographically, she was already an early advocate against the flight of white people to the suburbs. Of course, she did this in her own quiet way.”

Beginnings of Activism

“3 months later, the letter arrived in the mail: the NYC Board of Education had determined that I was unable to teach. It wasn’t a surprise.

The reason: ‘Paralysis of both lower extremities, sequela of poliomyelitis.’

I was officially considered a danger to children because I couldn’t walk.

I wasn’t contagious, but somehow I’d been deemed a contaminant.

It didn’t matter how smart or capable I was, or how good my grades were, or how much experience I had. None of that mattered to the Board of Ed.

Because I couldn’t walk, I wasn’t considered qualified to teach second graders.

They’d made their decision and printed it on the single sheet of white paper that had arrived in my mail.”

“The problem was, I had no recourse. Disability wasn’t covered at all in the 1964 Civil Rightis Act. The act was intended to end discrimination on the basis of race, color, religion, and national origin, but made no mention of disability. There was no law I could quote or legal precedent to cite.”

“Accidents, illnesses, genetic conditions, neurological disorders, and aging are facts of the human condition, just as much as race or sex. So allowing schools and employers and city councils to design policies or buildings or buses in such a way that we couldn’t participate was a violation of our civil rights. Which the government had a responsibility to protect.”

“We decided we needed publicity. A disabled guy I knew from school was a journalism major and stringer for the NY Times. I called him and told him about the Board of Ed’s decision. The next day a reporter called to interview me. A week later, the article, ‘Woman in Wheel Chair Sues To Become Teacher,’ came out. It was 1970, and I was 22.

“A media onslaught now began. The NY Post joined the Times, running an editorial in support of me. The NY Daily News ran an article with the headline ‘You Can Be President, Not Teacher, with Polio.’ Reporter after reporter called and article after article came out across the country. With all those interviews, I felt like I’d been thrown into the deep end. I had zero experience with public speaking. But amazingly, I found that the practice I’d had discussing issues at our family dinner table had prepared me. My dad had trained me out of any tendency I might’ve had to be quiet and unassuming. He’d taught me to be bold and go for it. Interrupt! Do whatever you need to do to get your point across.

But when a producer from Today called and invited me to appear on the show, I got very nervous. They wanted to set up a debate between me and an official with the US Office of Special ed. When I heard this I froze. I didn’t think I could do it. But then I just thought, ‘OK, I’m going to make this work. I may have no idea what I’m doing, but I’m going to do it.’ My fear didn’t completely disappear, but I was able to do it, and as the next challenge came, I simply moved forward.”

“After my appearance on Today, a number of things happened in quick succession. Roy called the Board of Ed to verify their reason for the denial of my license, and on May 26, 1970, approximately 3 months after I’d been denied by license, we filed my case in the Federal District Court. We were asking for the Board of Examiners’ procedures to be judged as unconstitutional, my license to be granted, and $75k to be awarded to me in damages. In a story on May 27, the NY Times called the case ‘the first such civil rights suit ever filed in a Federal court,’ stating that the Board of Examiners had said they were ‘studying my appeal.’ The Times reporter wrote that members of both the Board of ed and the Board of Examiners felt ‘sorry for me, but that they had to assure the safety of pupils, such as during fire emergencies.’

I was so tired of being called a fire hazard I could vomit.

But I was beginning to learn something very important: when institutions don’t want to do something, to claim that something is a ‘safety issue’ is an easy argument to fall back on. It sounds so benign and protective. How could caring about safety possibly be wrong or discriminatory? It’s hard to argue against ‘safety.’ Everyone wants to feel safe; it’s a basic human need.

‘I have an electric wheelchair,’ I told the reporter, ‘It moves faster than people walking normally.’”

“In a remarkably soft voice, Judge Baker Motlay informed the reps of the Board of Examiners and Board of Ed that she was due for a change of bench, which meant a change of caseload, but that they should make no mistake about her interest in the case.

‘I fully intend on keeping this case,’ she told them. ‘So I suggest that you do what you need to do to resolve this problem.’ With her concise words she made her meaning clear: do a review of this case, or else. With little argument, the reps of the school district capitulated. They agreed to allow me to do another med exam.

My third med exam turned out to be completely inconsequential. I drove into the doctor’s office and met the doctor, a younger woman. She basically sat at her desk, filled out some forms, and said, ‘I’m sorry. This never should’ve happened.’

When it became unavoidably clear to the NY City Board of Education that they were losing, they settled out of court and I got my license.”

“When I got older, I learned how truly lucky I was to have had Constance Baker Motlay as the judge on my case. At the time I had no idea of the role she’d played in the civil rights movement. The first black woman to graduate from Columbia Law, she, in 1950, prepared the draft complaint for what would become Brown v. Board. She was the only woman on the NAACP legal team for Brown. She’d also represented the freedom riders and numerous plaintiffs who were integrating whites-only colleges. And she was the first black woman to be elected to the NY State Senate, after which she became the first black woman appointed to a federal court, which is when I met her.

I don’t know if everything happens for a reason, but her presence felt like the result of otherworldly intervention. Many civil rights cases were assigned to federal judges who were vehemently antagonistic to the cause. With a different judge, my court case could’ve gone completely differently.”

“The other thing that happened in the aftermath of the court case was that my friends and I decided to organize a civil rights org: an org run by and for disabled people.

We reached out to all the people who’d written to or called me and invited them to our first meeting, which we held at LIU. 100+ people showed up, including some press. Given that there was no accessible public transport, this was a phenomenal showing of interest. At first we called the new org Handicapped in Action, but in fairly short order we changed the name to Disabled in Action, since we disliked the term ‘handicapped.’ I was elected the fledgling org’s first president, and the board of directors was made up of people with all types of disabilities. We worked on a whole slate of issues, from ending sheltered workshops and institutionalization to fighting for accessible transportation and protesting against the NY Times for their failure to cover disability-related news as a civil rights issue. We worked with other orgs, such as a hellhole institution on Staten Island that housed thousands of people with developmental disabilities, and we teamed up with disabled vets coming back from Vietnam.”

Berkeley

“Ed had had polio and could use only 2 fingers. He slept in an iron lung and used a motorized wheelchair. He’d been the first person with a significant disability to attend Berkeley, and he’d had to fight the university administration to be allowed to live on campus. Because there were no buildings designed to support the weight of his iron lung, he’d had to live in an empty wing of the university hospital. Pretty quickly, though, other disabled students in wheelchairs had come to Berkeley and moved into his ‘dorm.’ They called themselves the Rolling Quads and founded the Physically Disabled Students Program at Berkeley. The Center for Independent Living, which Ed was the director of, had grown out of this program, made up mainly of young disabled activists.”

“The State of CA provided financial support for disabled people to hire personal assistants, so they didn’t have to be dependent on roommates and friends, as I was in NY. And the Center for Independent Living represented a community that could help me figure out how to access everything I needed to be on my own — like how to find an accessible apartment, where to repair my wheelchair if necessary, and how to actually advertise for and hire a personal assistant, which I’d never done before.”

“We were waiting for takeoff when the pilot came on to the intercom and announced that the flight was on hold — not cleared for takeoff.

A flight attendant walked toward me. It looked like I might be the reason we were on hold.

‘I’m sorry, ma’am, you’re not permitted to fly by yourself. If you don’t have someone who can be with you to help you in the event of an emergency, then I’m going to have to ask you to get off the plane.’

I smiled at the flight attendant.

‘In the event of an emergency,’ I informed her, ‘I am not going to be the only person who needs help off the plane.’ The flight attendant’s smile tightened. She returned to the man next to me.

‘Sir, would you be willing to help this woman in the event of an emergency?’ The guy agreed to help me. But I intervened.

‘No, thank you,’ I said to the man. ‘In the event of an emergency, I’m sure they’ll need to be dealing with the situation and helping more people than me. I’m not unique.’ The smile left the flight attendant’s face.

‘Ma’am, we’re going to have to have a doctor come on the plane to certify that you can travel on your own.’ People around us turned their heads to look at me.

‘Well,’ I said calmly, ‘if you’re planning on doing a med exam for everyone on this plane, that’s fine with me.’ By this time, the flight attendant had been joined by a small group of other flight attendants, who clustered around her. One of them pushed forward to speak to me.

‘I’m sorry, ma’am, you’re going to have to get off the plane.’

‘No,’ I said firmly. ‘I will not get off the plane.’ The entire plane was looking at me.

The flight attendants turned around. One walked off the plane and the rest gathered around the cabin door, whispering.

A few minutes later, 2 Port Authority policemen boarded the plane. They walked directly to my seat.

‘Ma’am, you’re under arrest. Please leave your seat.’”

“Right there was our catch-22: Because the country was so inaccessible, disabled people had a hard time getting out and doing things — which made us invisible. So we were easy to discount and ignore. Until institutions were forced to accommodate us we would remain locked out and invisible.”

The Federal Occupation

“A sense of euphoria washed over the office. When you can’t live independently, you don’t get many chances to rebel.

From Maldonado’s office we called the other protests and were delighted to discover that Denver and LA had also refused to leave the regional HEW offices, and DC, the national office, had also refused to leave. There were approximately 50 protesters in DC, 7 in Denver, and 20 in LA.

We were occupying 4 federal buildings.”

“Our parents had organized according to their kid’s type of disability. They’d seen disability as a particular problem of their child and a particular school’s policy, not a widespread political issue. We who’d come of age under the influence of Rosa Parks and MLK Jr., not to mention Gloria Steinem and the United Farm Workers, knew we were a band of underdogs fighting powerful institutions. If we didn’t fight as one voice we’d never win.

Later, we added a committee for recreation.”

“‘Califano is working on a major redirection,’ she continued. ‘They have a list of issues. They’re looking at potentially excluding a whole generation of buildings from compliance, leaving alcoholics and drug addicts out of the regulations, and creating some sort of university consortia that allows universities to avoid becoming accessible. It would essentially require disabled students to attend classes only at certain universities.’

Silence.

Finally, Pat spoke.

‘It’s still separate but equal in a new form.’

Kitty said what we were all thinking: ‘They’re not taking us seriously at all.’”

“Not long after, we found out that Denver and NYC had folded. They’d had no personal assistance or accessible bathrooms.

Now Califano was going to be even more sure that we were on the verge of falling apart.”

“We talked about how to break through the isolation Califano had imposed on us. How could we stay in regular touch with our allies and the press? The stream of articles and public declarations we’d been getting were putting pressure on HEW and the administration. We had to keep the articles coming. If we didn’t we would fade into irrelevance. But how?

Then it occurred to us. We had a secret weapon.

Sign language.

We decided to give our announcements and messages to the deaf protesters, who took them to the windows looking out on the plaza, where our supporters were holding the vigil. When they got the attention of the deaf protesters and sign language interpreters outside, they signed our messages through the window. The deaf protesters and interpreters then relayed the messages to the right people.

It was beautiful.

Our second secret weapon came from a totally unexpected direction: HEW itself.

Very early on, we’d determined that we would act with the utmost respect and friendliness toward the HEW staff and security guards in the building. The friendly policy was slowly having an effect. Our behavior, along with the fairness of our cause, was gradually winning the sympathies of the HEW employees. That day, 100 employees signed a petition in support of us and sent it to Califano. The HEW regional assistant director, Bruce Lee, whose father was blind, had been applying pressure to Maldonado to push Califano to sign; that Friday he also started using a warning system with us, turning his lapel pin upside down to tell us when security guards were coming. All of these things helped undermine Califano’s position.”

“We were in Maldonado’s office later that afternoon when one of the protesters came quickly rolling in.

‘The Black Panthers are forcing their way into the building!’

Zooming out of the office, we rolled down the hallway just as the fourth-floor elevator doors slid open. I couldn’t quite process what I was seeing. 6 tall black men wearing slouchy hats, sweater vests, and black leather jackets walked off the elevator carrying plastic tubs.

‘We told the security guards we would stop at nothing to bring the media’s attention on HEW if they didn’t let us in and you guys got starved out.’ One of them said to me, ‘We’ve got dinner and snacks here.’

The Black Panthers brought us food every night for the rest of the protest.”

“The most remarkable thing about our buildingwide meetings was the culture of listening that developed. No matter how long it took for someone to talk, we listened. Every one of the now 150 protesters would listen in a perfect and beautiful silence. When Hale Zukas pointed out one letter at a time on his board with the makeshift pointer stick attached to his head, the room swelled with a gracious quiet. We treasured the ability to create our own space, where our communication needs, and their slower pacing, were respected.”

“For those of us who’d grown up with a disability, the sit-in may’ve felt more like camp than anything else. Camp was the one other time in our lives when we’d live in a world that worked for us and our needs. Where we didn’t have to feel inferior for being slow or different. For being a burden. Where we could be ourselves without apology. In the building, just as at camp, we could easily visit each other and spend time together without having to rely on a family member, or a friend, or unreliable public transport. The inaccessibility of the outside world, which so often left us isolated, felt very far away.”

“The next day Pat and I were sitting in a bar on Capitol Hill, watching the news and talking about what to do next, when a reporter came on and said that Joseph Califano, secretary of the US Department of Health, Education, and Welfare, had signed the enabling regulations for Section 504 of the Rehab Act of 1973 as they’d been written under the Ford administration.

It was Thursday, April 28, the 24th day of the sit-in.

Pat and I looked at each other. Was it true? We couldn’t believe it.

But it was true.

I was told that there was jubilation on the 4th floor of the SF Federal Building — victorious shouting, hugging, laughter, and, ultimately, crying.

Because, as it turned out, people didn’t want to leave the building.

They’d made friends, had fun, fallen in love, and felt fully free to be themselves. And in the process, something magical had happened. In the cocoon of the building, a metamorphosis had occurred.

‘We all feel in love with each other,’ CeCe Weeks explained to a reporter.

‘I’ve discovered that I count as a person,’ a protester told another reporter.

‘Instead of seeing myself as a weak person, I found my strength reinforced by others like me,’ said another.

‘I’m going to miss them,’ said a Federal Building guard; he’d started learning sign language and hoped one day to become a sign language interpreter. ‘They were real nice people.’

Nobody expected to feel as heartbroken as they did that the sit-in was ending.

They decided to spend one last night together in the building to celebrate.”

“On the morning of Saturday, April 30, 26 days after the first rally outside the Federal Building, 100+ validated protesters left the building for the last time. Hugging and kissing the guards, singing ‘We Have Overcome,’ smiling and waving, holding ‘Victory’ signs, carrying plastic crates, backpacks, and bags of belongings, they emerged into the sunlight of the plaza in a long line.

Outside, an exuberant crowd waited for them, clapping, holding signs, smiling, and chanting, ‘Power to the people.’”

Post-Victory

“Even though 504 had been passed and the regulations signed, structural changes had to be made to allow us access, and structural change requires commitment and effort. To ensure that Section 504 would be understood, implemented, and enforced, projects, programs, and orgs had to be formed.

Many didn’t want to do what it took to integrate the schools, or make buildings accessible, or do any of the myriad other things that the regulations required. The American Public Transit Association put out a letter saying it was going to cost too much money to make the bus system accessible. So we geared up for a big fight and discovered that it cost the same amount of money to put AC in a bus as it did to put a wheelchair lift in.”

“We — the disability activists — had to do what we could to be prepared to provide technical assistance, to speak with, and, when necessary, argue with the engineers and financial analysts. As a result, activists started to pursue their studies and specialize. This was a huge boost to our momentum.”

“In some countries, housing authorities received money to work with people to modify their houses or apartments and make them accessible, whether they rented or owned.”

“I discovered that no other country had an antidiscrimination law like 504.”

“I had to grow, internally, as we all do. As disabled women, we didn’t have help from the women’s movement. We were always pushing to have our issues considered and supported by the women’s movement, but we were largely ignored.”

“On March 12, 1990, a thousand people came to DC to protest the failure of the government to pass the ADA.

To reach the Capitol’s main entrance there are 83 marble steps to climb.

It was in front of those steps, on an unseasonably hot day in early spring, that the protesters who had come to DC assembled. Pushing themselves out of their wheelchairs, dropping their crutches to the side, leaving any other mobility assistance behind, they began to climb the steps. Some landed softly with help from friends; while others fell out of their chairs directly onto the bottom step.

One by one, people dragged themselves up to the second, the third, the fourth step. Some inching forward on their backs, others lying on their bellies, their bodies and legs trailing behind. Using an elbow, a knee, a shoulder, they pulled themselves up.

One was a little girl named Jennifer Keelan, who had cerebral palsy and had come all the way to DC from Arizona after being denied service in a restaurant. ‘No one wants to watch you all eat,’ a waitress had told her. She’d become an activist and was determined to join the protest on the Capitol’s marble steps.

She used her elbows and knees to climb. Lying on her stomach on the second step, she raised her head to look at the stairs above her, her lip bloodied from where she’d fallen on the hard marble. She was already sweating, a red, white, and blue bandanna tied around her head. Pausing, she asked for water, which several volunteers immediately offered.

It could take all night for her and the rest of the protesters to get to the top. 60+ people climbed the steps.”

“The bill was radical and would produce critical change. Its wording mandated that within 2 years of passage everything would have to be accessible. Everything.”

“4 months later, the House finally passed the Americans with Disabilities Act.

July 26, 1990, was a glorious summer day in DC. The trees were lush, the sun was out, and the sky was blue. 3,000 people were gathered on the South Lawn of the White House. As President Bush began to speak, a hush fell on the enormous crowd.

‘Let the shameful wall of exclusion finally come tumbling down,’ he said.

And he sat at a desk and signed the act into law.”

Love

“I went over to the man and introduced myself. It was easy because I was working. I was supposed to be connecting with the workshop participants.

We sat together at a picnic table and talked. I didn’t speak Spanish, but Maribel helped interpret. We’d been to a farm and a horse had accidentally bitten my finger. He looked at it and took my hand gently, asking me what I’d done to take care of the bite. His name was Jorge.

Maribel enlisted Susie to help interpret, and they were like schoolgirls egging me on, pushing us together at lunch the next day. Jorge’s manner made the conversation flow easily. I discovered that as part of the delegation, he was helping a person who had cerebral palsy with some personal assistance. He had acquired his disability, which affected his ability to walk, at birth. He’d walked with braces and crutches in Mexico, but used a wheelchair in the US.

That night I invited him to come onto the bus with us on the way to the restaurant. Maribel and Susie tried to get me to sit separately with him to have dinner, just the two of us. But I was like, ‘No way,’ so the four of us had dinner together. That was when I learned about how he’d met Gaby Grimmer, a disability rights activist in Mexico who had cerebral palsy, and quit his job as an accountant to work with her. He was funny and kind.

On the way back, we ended up on the same accessible bus. When Susie offered the little guest house in her backyard, Jorge and I spent the night together.”

“Instead of flying back to Mexico, he came to Berkeley and spent 2 weeks with me. We learned more about each other in that way that you do early in a new relationship. In a mixture of broken English, looked-up Spanish words, and signals, we traded stories and histories, views and beliefs, reveling in that euphoria of newness. He was 8 years younger than me and came from a big family in Mexico City, for whom he had a great love. I learned about his deep connection to animals and the environment. I admired his strong values and principles.

A month later, he came back to Berkeley again. 6 months later, he moved in with me.

We got married in Berkeley the following May. It was 1992.

In Berkeley, Jorge got a job and made new friends. We had a good life and it was a fun time for us. I was still at WID and we were in the midst of the disability activists community in CA. We talked about having kids. I was 44.”

The Clinton Administration

“I picked up [the phone] to hear the familiar voice of a friend in AR. After a few of the usual brief pleasantries, he cut to the chase and asked me a question I never expected to hear.

‘Would you be interested in a role in the Clinton administration?’

I was speechless.

I listened to him talk about what the Clinton admin was looking for and why he thought I’d be great. As he spoke, though, my mind fluttered with thoughts and questions. I was flattered, for sure. But I was happy with my life in Berkeley, happy with Jorge, happy with our life. Did I want to trade that relative calm for a ride on a political roller coaster? On the other hand, this was an opportunity to get into the driver’s seat for a change, rather than always being the one fighting just to get on the bus. My mind buzzed. Before I realized what I was saying, almost instinctively, the words tumbled out of my mouth.

‘I’d be interested in the assistant secretary position in the Office of Special Ed and Rehab Services in the Department of Education. And nothing else.’”

“In DC, in this new position, I would be responsible for 400 staff, with a budget of about 10 billion dollars under my management.”

Global Issues

“This was my first trip to India.

In Delhi we were met at the airport by World Bank staff with an accessible vehicle. It wasn’t until we got into the thick, hot air outside the airport, among the masses of people, cars hurtling by, dust rising, that we saw the men and women who crawled in the streets. The crawlers, they were called. Disabled people without wheelchairs, forced to crawl through the streets. Many of the crawlers had had polio. The thought struck me: That could have been me.

Sitting on street corners were disabled people begging. Small children, some blind, others with a truncated leg or missing a limb, held begging bowls. One of the staff explained that a number of these kids hadn’t developed their disability naturally. They’d been sold by their families to organized criminal groups, who had then injured them so that they could beg. It was sickening, but the saddest thing was that I wasn’t surprised. The mistreatment of disabled people resonated too deeply for me to be surprised.”

“Our continued need for help as disabled adults made us vulnerable. Over 80% of women with disabilities will be sexually abused in our lifetimes, which is about 4x the rate among nondisabled women.”

“‘How have things changed since you started organizing?’ I asked the men and women, while the little child still played with his marker at his mother’s feet.

‘Well, now they’re calling us by our names,’ said a man who was blind.

‘They used to just call us by our disability — ‘limper,’ ‘blind,’ ‘deaf,’ said another.

In another village I sat on the porch of a small house. Cords ran out the windows, bringing electricity from the house next door. The village paths around us were dotted with wells. It was monsoon season and the heat pressed. This group of disability activists was full of mothers of children with very significant disabilities who were fighting to get the ID cards that would allow their children to go to school. They reminded me of the parents I’d met all over my own country, fighting for their kids’ education.”

The Obama Years

“Obama had signed the United Nations Convention on the Rights for People with Disabilities (CRPD). It was huge.

The CRPD is an international human rights treaty intended to protect the rights and dignity of persons with disabilities. Countries that sign and ratify the treaty are required to promote, protect, and ensure the human rights of people with disabilities and ensure that they enjoy full equality under the law. At that time, and still today, the convention served as a major catalyst in the global movement for changing how disabled people are seen — that is, no longer as objects of charity, medical treatment, and social protection but rather as full and equal members of society, with human rights.

While at the World Bank I’d attended a number of the meetings convened at UN HQ in NY to develop the CRPD. In many ways the treaty was modeled on legislation like the Americans with Disabilities Act. For that reason the Bush admin had said it wouldn't sign or ratify it — because the US didn’t need it. Although the US had an official delegation that attended all of the formal and drafting sessions, for many years delegation members weren’t allowed to formally engage with international colleagues.

And then Pres. Obama was elected.

I’d attended the ceremony at the White House where he and Secretary Clinton had announced that the US would sign the CRPD and would be creating a new position at the State Department to work toward the US ratifying the treaty. The Special Adviser on International Disability Rights would lead the effort to try to mobilize support for the CRPD in the Senate. If the Senate voted to approve the treaty, then Obama would ratify it. This special adviser would also be responsible for integrating a disability lens across the State Department.”

“In the end, in spite of all of our work, CRPD went down. In the 20+ years since the Republicans and Democrats had collaborated to pass the ADA in 1990, things had changed. People were more concerned about using their power to score political points against each other.”

“Although much progress had been made, significantly lower numbers of us were going to college than were nondisabled peers, we were also much more likely to be unemployed, and we were much more likely to live in poverty than nondisabled people.”

“As of today, 177 countries and counting have ratified the UN Convention on the Rights of Persons with Disabilities. And someday, hopefully, [the US] will ratify.”