For decades people with disabilities fought and protested for equal access in the United States. In 1990, that effort culminated in the passing of the Americans with Disabilities Act (ADA), a landmark civil rights law that has improved the lives of millions of Americans and has served as a model for the Disability Rights Movement around the globe.
On March 12, 1990, activists with disabilities pulled themselves up the 83 stone steps at the Capitol Building to demand equal rights. “The Capitol Crawl” symbolized the barriers confronting people with disabilities and helped propel the Americans with Disabilities Act into law. The bill passed on July 26, 1990.
For the 25th anniversary of the ADA, we celebrated the spirit and vigilance of the leaders of the Disability Rights Movement, both past and present.
A station wagon rolled up to Burlingame High School in Burlingame, California at lunchtime. A young man was unloaded from the car by his family, who carefully supported his head, his back, and his legs while doing so. For the past few years he had been so terrified of being stared at that he had not wanted to leave the house. Arriving in the lunch courtyard, where hundreds of students were gathered, he looked up, and his worst fear was realized. Everyone turned to gawk at him. “When I looked up at them, they looked away,” he recalled.
The man was Ed Roberts, who was then in his senior year of high school. As a young boy, he had loved football and baseball, and was the fastest kid on the block. But at age 14, in 1953, polio paralyzed him from the neck down. From then on, he used an iron lung to breathe and a wheelchair to move around. His doctor said he’d be a vegetable.
Though his arrival at the Burlingame High campus was initially terrifying, he would in later interviews return to this moment. It sparked a transition from a boy wallowing in self-pity to the visionary leader he eventually became. “Something remarkable occurred to me,” he said. “The first thing was that it didn’t hurt. For people to stare at me did not hurt me. The second thing was that maybe it wasn't all my problem, because when I looked back, they would look away. As I thought about that, why was I taking all this on as my problem when wasn't the fact they stared also their problem?”
And then he realized something else—that the attention could turn him into a star. “I think that was one of the more important times in my life, that I realized I could enjoy it. I didn't have to feel guilt or anger,” he said. “Actually, I could enjoy being stared at if I thought of myself as a star, not just a helpless cripple.”
A few years later, he started college at U.C. Berkeley and quickly convinced the university to let him take up residence in an old hospital wing. Soon, other disabled students arrived to build on Roberts’ improvised accommodations. They initially called themselves the Rolling Quads—named for quadriplegics in wheelchairs— which he later organized into the Physically Disabled Students Program. The PDSP eventually became the Center for Independent Living, which extended its benefits beyond the confines of the campus and helped make Berkeley into one of the most accessible cities in the world. Later, Roberts became Director of Rehabilitation Service in California, co-founded the World Institute on Disability with Judy Heumann, served as an inspirational leader in the fight for the ADA, and travelled the world to learn and teach wherever he went. He passed away in 1995, having seen the ADA realized five years earlier.
Heumann, a legend of the disability rights movement herself, remembers the power of his dark eyes.”He had a great smile and he could draw you in with his eyes and he totally knew that,” said Heumann. He knew how to work people, really, really well.” He knew that people were going to stare at him, so he’d stare right back. Roberts said, “I became a star. I just assumed that position.”
It was the summer of 1969, and big things were happening: Vietnam War protests, the Stonewall Riots, Woodstock,even an astronaut on the moon. Twenty-something Judy Heumann sat in her wheelchair in her family’s Brooklyn apartment. She was holding an envelope. The ominously thin sleeve of paper from the New York State Board of Education had arrived that Monday.
She had recently graduated from Long Island University and wanted to become a teacher. She had studied hard and persuaded friends to carry her up and down flights of stairs for the written and oral portions of the teacher’s exam. But when it came to the medical portion of the test, she didn’t stand a chance. Heumann had contracted polio as an infant and relied on a wheelchair for mobility. She could not walk. She could not easily evacuate a building in the event of an emergency.
Heumann peered at the envelope and carefully opened it. The letter inside read: Certification denied for “paralysis of both lower extremities sequelae of poliomyelitis.”
“I had to make a decision about whether I was going to pursue getting my teaching license or whether I was just going to let it drop,” Heumann said. In the fourth grade the principal of P.S. 197 in Brooklyn had declared her a fire hazard and attempted to prohibit her from attending his school. At her high school graduation, another principal had tried to prevent her father from pulling her and her wheelchair up a short flight of steps to the stage so that she could receive an award during the commencement ceremony. There was no way Heumann could accept the Board of Education’s decision.
The next day Heumann contacted a college friend who was working as a stringer at The New York Times. On Wednesday the newspaper ran an article describing the discrimination she had experienced . On Thursday, the Times went further and published an editorial in her defense. A New York Daily News headline blared, “You Can Be President, Not Teacher, with Polio” and compared her to Franklin D. Roosevelt. Seventeen other newspapers published op-ed pieces supporting her.
Heumann’s phone began to ring almost incessantly. “My name is Roy Lucas,” the caller said. “I’m an attorney writing a book on constitutional law and I’d like to interview you.”
“Well, I’d like to interview you,” Heumann said with her usual chutzpah. By the time the call ended, Lucas had agreed to represent her pro bono. He partnered with attorney Elias Schwartzbar, a customer in her father’s butcher shop, to represent Heumann in her first lawsuit. By 1971, Heumann was teaching at her old Brooklyn elementary school, P.S. 219. She became the first teacher in New York State to use a wheelchair.
Six years later, Heumann wheeled herself through the doors of the U.S. Department of Health, Education and Welfare in San Francisco. She’d led protests that blocked traffic on Madison Avenue and swarmed Richard Nixon’s campaign headquarters to help pass the Rehabilitation Act, which linked the lack of access to buildings and services to discrimination against people with disabilities. But a slow-moving Congress had yet to define what inclusion looked like on buses, in schools, and in public spaces. Along with disability advocates like Ed Roberts and Kitty Cone, Heumann led 150 people with disabilities in a 28-day sit-in, the longest takeover of a federal building in American history. It culminated in a trip to Capitol Hill, public hearings, and finally, victory. Activism plus collaboration with politicians was working. Thanks to Heumann’s leadership, the Americans with Disabilities Act would soon become possible.
Today, Heumann serves as Special Advisor for Disability Rights in the State Department and is working to teach people around the world the best practices enshrined in the ADA. Her journey to advocacy from this global stage can be traced to that moment more than 40 years ago when she decided to fight discrimination. “It was the first real time that I really had to step forward. I wanted to be a teacher.”
It was a hot, swampy July day on the South Lawn of the White House. Shade from the sun was scarce and a row of ambulances idled nearby in case anyone got sick from the heat. Meanwhile, Justin Dart Jr. sat on a platform. With his trademark cowboy hat shielding his eyes, he looked out at over 3,000 people who had gathered to watch the Americans with Disabilities Act be signed into law. It was the biggest crowd to attend a bill signing ceremony in White House history. He was supposed to feel euphoric. Instead, as he later told author Fred Pelka1, he was only worried about the future.
He had only found out that morning he would be on the platform, and he wasn’t sure it was at all appropriate. He thought of all the other people who should have been up there with him. But it was basically just him and Employment Opportunity Commission chairman Evan Kemp, two men in wheelchairs, representing the entire disability community. It was a little awkward, but that wasn’t the real reason he felt uncomfortable.
He listened as President George H. W. Bush offered soaring rhetoric, describing the crowd as “a splendid scene of hope.” Bush said, “Three weeks ago we celebrated our nation's Independence Day. Today, we're here to rejoice in and celebrate another ‘independence day,’ one that is long overdue.”
A few minutes after his speech, the president sat at his ceremonial desk, Dart just to his left. Bush reached out with his left hand and Dart clasped it in both of his. Moments later, Bush signed the first part of his name -- George -- on the bill and handed the pen over to Dart, offering him a keepsake to treasure. The artifact represented the consequences of years of activism. Dart knew he should feel proud, and he did. But as the president finished signing his name, Dart was mostly thinking about the battles to come.
In the years leading up to the passage of the ADA, Justin Dart and his wife Yoshiko spent years travelling to every state in the country between four and twenty times. Sometimes they met with three people, sometimes thousands, but each time they solicited testimony from people with disabilities on the discrimination they encountered. Dart delivered that testimony to members of Congress in dramatic public hearings, demonstrating the specific human cost of inaction. Moreover, he took advantage of his political connections within the Republican establishment to lobby for the ADA, finding members of the right-wing establishment whose personal connections with disability might form a bulwark against business interests only concerned with cost.
It worked, the bill passed, but still, he was worried that day. Dart later explained that he had asked himself, “What if we did it too soon? What if we can’t carry it off, and it is perceived to fail?” He knew at that point that he would never rest easy. He went to the celebrations for the new law, but did not feel euphoric. Instead, he felt the heavy weight of responsibility to make the ADA work.
Fortunately, he didn’t have to carry that weight alone. Dart spent the remainder of his life encouraging young activists like Claudia Gordon and Tia Nelis to lead, to speak, and to organize. He may have felt lonely on the stage with President Bush, Kemp, and a few others, but he spent his next decade surrounded by the community he had helped create. On his last video interview six and a half days before his death, he said, "I want to be remembered as a unifier."
After the signing ceremony, Dart started referring to the ADA as “a promise to be kept.” Twenty-five years later, Justin Dart Jr. is no longer with us, but thousands of people work every day in order to help our nation keep that promise.
Senator Tom Harkin was six years old when the state took away his big brother. Frank had lost his hearing from spinal meningitis and was sent to the Iowa School for the Deaf in Council Bluffs. The imposing three-story red brick building and 100-acre campus were more than 150 miles from the one-room school house in their hometown of Cumming. People referred to it as ‘the school for the Deaf and dumb.’ Frank came home and complained to his younger brother, “I may be Deaf but I’m not dumb.”
Frank would board during the school year, coming home only for Christmas and Easter vacations. Gone was the brother whom the other four Harkin children loved and admired. When Frank reached high school, the guidance counselor said he could be a baker, a shoe cobbler, or a printer’s assistant. Frank protested, “ I don’t want to be any of those things.”
“Ok,” the school counselor said, “You’ll be a baker.”
Frank went to work in a small bakeshop in West Des Moines. One bright spot in his circumscribed existence was the man who came in for donuts each morning. They would strike up a conversation of sorts across the glass counter. Neither of them knew sign language but Frank could read lips.
“How do you like baking?” the man asked one day.
“I hate it,” Frank replied. “I want to work with my hands and machines.”
“Then come work for me,” the man said. His name was Mr. Delavan, owner of a small manufacturing plant that employed 200 people. Frank learned to operate a machine that drilled precise holes in jet engine nozzles.
After a few months, Delavan asked his foreman, “How’s Frank doing?”
“Amazing,” the foreman replied. “This guy always shows up on time, never leaves early, and puts out more parts per hour than any employee, and he never makes a mistake.”
Delavan was astounded and questioned his prized employee. While other workers were distracted by the clinking, clanking and banging of metal and machinery, Frank’s Deafness allowed him to concentrate solely on the task at hand.
Frank’s struggles laid the foundation for Harkin’s entry into politics and eventually his leadership of the Americans with Disabilities Act (ADA), which he co-authored with Senator Bob Dole of Kansas. When introducing the bill, Harkin used sign language to address his Senate colleagues: “I wanted to say to my brother Frank that today was my proudest day in 16 years in Congress.'' Throughout the long process to pass the bill, Harkin found allies in other lawmakers, like Dole, who had personal experiences with disability.
Frank would pass away from cancer 10 years after passage of the ADA. “To the day he died,” Harkin says, his eyes brimming with tears, “I don’t think that Frank ever felt that life gave him a fair shake. Frank would be so proud to see kids going to mainstream schools and not being sent away from home to some school halfway across the state.”
One of the top-rated episodes of the old tv series Lassie involves a young girl named “Kathy.” She is Blind and fears walking alone down a woodland trail. Eventually, the famous collie helps Kathy summon the courage to enter the forest of oaks, pines and fragrant wildflowers. She stumbles and falls but Lassie, naturally, is there to urge her forward with an encouraging bark. In reality, the child actress isn’t at all afraid of the forest. If she is scared of anything, it’s hearing the director yell, “Cut!” and then having to do another take. Her knees ache from having to fall over and over again during the week-long production.
Kathy was played by Kathy Martinez, who, like her namesake character on the show (a coincidence, she says), was born Blind. She is one of six kids and both parents worked several jobs. Martinez was paid the Screen Actors Guild rate, a paycheck that represented a fortune compared to the money she earned from odd jobs in the neighborhood. At the time, she was learning to play the clarinet and proudly paid off the installment plan to purchase the instrument. Her mother loved onion rings and her brothers and sisters liked the tacos at the local Jack-in-the-Box, so she treated her family. “Appearing on Lassie was the beginning of my realization that if I was able to have money, it would make my life easier,” Martinez says. “It inspired me to work.”
Martinez’s desire for work led to an assembly line job at a lock factory after high school, and later to college so that she could qualify for higher paying jobs. Then in April 1977, she happened to be in San Francisco for mobility training at a center for the Blind. “I received a flyer in Braille announcing a rally. It said ‘Fight for Your Civil Rights.’”
The rally became a 28-day takeover by 150 people of the U.S. Health, Education and Welfare offices. They were protesting the Carter Administration’s four-year delay in making buildings, transportation and public spaces accessible as required by Section 504 of the Rehabilitation Act. Martinez arrived on day two of the protest and found solidarity with the crowd outside: people with physical and psychiatric disabilities, some Black Panthers, LGBT community members, Glide Memorial Church staff, and even the workers of a supermarket chain who were delivering food to those inside. “It was the bridge for me to the disability rights movement. I had worked as a farm worker activist and been involved in the women’s movement, but I had always thought that if you were disabled you just had to deal with it. Now, I had found a place where it was ok for me to be Blind, Latina and lesbian.”
Today, Martinez proudly cites all her identities as she works at a major bank to increase employment diversity in the private sector. She’s travelled the world, served on the National Council on Disability, and been Assistant Secretary of Labor. But she’s always remembered the lessons from Lassie and the lock factory. Jobs matter.
Despite the ADA, unemployment among people with disabilities remains nearly double the rate of non-disabled people. Getting people hired, Martinez says, will require changing companies’ attitudes about workplace accommodations. “What people don’t realize is that we are all accommodated. I use a screen reader to do my job, a sighted person uses a mobile phone or a laptop. We need to start calling all of these things productivity tools. That’s what they are.”
In many ways it’s the same challenge faced by the producers of Lassie when they issued a casting call through the Braille Institute in Los Angeles. “They held honest-to-God auditions,” Martinez says. “It took a lot of courage for the producers to hire blind kids in 1969, instead of sighted actors.” In the end, the accommodations for the Blind children were no big deal, and the young actors delivered a top-rated episode.
Patrick Kennedy pauses halfway up the stairs leading to his library. Three sections of a massive wooden mast, each perhaps a dozen feet long and a foot or two in diameter, tower above him, secured against the wall with stout iron mounts. When joined, these sections would guide his late father Senator Ted Kennedy’s beloved schooner, the Mya.
Looming over his shoulder is another family artifact: A thin necktie, green with narrow, diagonal white stripes, protected by glass inside a black shadowbox. It belonged to his late uncle, President John F. Kennedy, and was worn by him while campaigning in 1960. “I often wore this tie during my first term in Congress,“ he says as he resumes climbing the stairs. Today, his attention is focused elsewhere.
“Here it is,” he says upon entering the library. He removes a lacquered magazine cover hanging on the wall and holds it at arm’s length. It shows President Kennedy signing the Community Mental Health Act. In a room filled with memorabilia of people who charted a course to the moon, championed civil rights, abolished the federal death penalty, led the way on healthcare reform, and served at the highest levels of government for three generations, this is the most important item to Kennedy right now.
“The mentally ill need no longer be alien to our affection or beyond the help of our communities,” he recites from memory in his attic library. The words were first spoken by his uncle in 1963 but continue to resonate deeply with Kennedy.
He is also keenly aware of his father’s role in muscling the ADA through Congress. “It was my dad's belief that we were part of the continuing progress in America, of expanding the circle of opportunity for each generation.”
While the ADA expanded greatly the circle of opportunity for people with disabilities, there’s still more to do. “We need to find new ways of accommodating people with mental illnesses, intellectual disabilities, and those who suffer from substance use disorders. They need to be accommodated in the same way we accommodate all disabilities, because when we do, we maximize the opportunity for those people to fully participate in America.”
Kennedy served Rhode Island as a Congressman from 1995 to 2011 and while on Capitol Hill continued his family’s advocacy for disability rights. Notably, he authored the Mental Health Parity and Addiction Equity Act, which requires insurance companies to provide the same level of benefits for the care of psychiatric disabilities as for other medical and surgical procedures. On another wall in his library, Kennedy has framed the pen given him as a thank you gift by President George W. Bush after he signed the law.
Since leaving Congress, he’s founded the Kennedy Forum on Community Mental Health, a policy group, and he’s co-founded One Mind for Research, a scientific organization. One Mind embraces advances in open science, computing power, big data analytics and low cost genomics for its research efforts – two of them are dubbed “Gemini” and “Apollo,” and they seek to better understand post traumatic stress and traumatic brain injury. “I say we need a NASA for inner space,” Kennedy says, invoking the urgency of President Kennedy’s moon shot speech.
He is also working to end the stigma associated with all psychiatric disabilities, from autism to neurodegenerative disorders to addiction. Too often, he says, “We ascribe symptoms of behavior as character flaws, not as brain chemistry issues,” and then marginalize those people with them. In 2006, Kennedy publicly disclosed that he had been diagnosed with depression and bipolar disorder, and he described a fear, held by many with psychiatric disabilities of being “labeled” as someone with a mental illness. He sees overcoming attitudinal barriers and social discrimination as the next step for strengthening the ADA.
“We're now on the cusp of expanding what we understand to be a disability to include those invisible disabilities, the ones that we can't necessarily accommodate with the curb cut,” Kennedy says. “This is an issue of equal rights. It’s a medical civil rights issue.”
A conference room at the Marriott Hotel in Schaumburg, Illinois was as good a place as any to try and change the world. At least, that was the plan of a small group of self-advocates, people with cognitive disabilities determined to seize control of their own lives. They had recently volunteered to form the steering committee of a new national organization, so new they hadn’t even named it yet. But when the meeting began, the voices of Tia Nelis, a self-advocate from Illinois, and the others were drowned out by an unlikely source—their own supporting advisors.
Nelis had endorsed the idea of a national organization with some hesitation. It was a more ambitious endeavor than the state and local groups that had come before. “It was very scary to us,” said Nelis. “We didn’t know if we were making a difference starting something bigger than state level. Me and my friend Nancy from Nebraska were kind of freaked out about it.”
But the stakes were high. The ADA had been passed on July 26, 1990, just nine months before the Schaumburg meeting, and the disability community was celebrating the promise of a more accessible world. The people in the meeting room, however, felt overlooked. They weren’t sure that the ADA would meet their needs or empower them. Even the well-intentioned often spoke on behalf of people with intellectual disabilities, rather than helping them find their own voice.
That’s what was happening in the meeting. The advisors kept talking over their clients. They rambled on about mission statements, bylaws, and committees. Goals, funding, and workflow. Sure, the advisors were excited about the ambitious project and wanted to help, but they were missing the point of self-advocacy. It was time for a drastic measure.
“We got really mad because all the support people were talking and they were taking over. They were talking too much. So we decided to ask the support people to leave the room,” Nelis said. Then some of the self-advocates got scared. “They thought that if they asked people to leave the room, that they might not come back. Sometimes people are your friends until you disagree with them, and then they don’t come back to support you.”
Nelis quickly clued in some of her most trusted advisors, who reassured the group that real friends always come back. Then Nelis, along with her friend Nancy Ward, sent the support staff out of the room for two hours. When the staff returned, most of the organizing was done, and Self-Advocates Becoming Empowered (SABE) was on its way to becoming a reality, its name chosen and mission statement drafted. Nelis and Ward were elected SABE’s first leaders.
Nelis and the other advocates learned an important lesson about finding their voices, ”It gave us courage then to know that we can do it, and that people who are really going to support you will be there in the long run. It’s ok to disagree. You can speak your mind and say what you want.”
Since then, Nelis has been speaking her mind plenty. Eight years later, she camped out on the steps of the Supreme Court to hear whether the justices would agree that living in a community, rather than an institution, was a civil right. Once they did, in the Olmstead case, she took the message nationwide. As the current Self-Advocacy Specialist at the Institute on Disability and Human Development at the University of Illinois - Chicago, she helps the world “to get rid of the labels that hurt people.” People with disabilities, she says, are people first -- not just “patients and clients, but friends and neighbors.”
It’s three weeks after Hurricane Katrina has hit New Orleans and Claudia Gordon is worried. From her perch at the Office for Civil Rights and Civil Liberties at the Department of Homeland Security in Washington, she and her colleagues are working frantically to coordinate the emergency response for people with disabilities who were in the path of the brutal hurricane. But on the ground in Louisiana, there’s just too much one-size-fits-all thinking. People with disabilities are being abandoned, forgotten, or isolated from their families.
So Gordon -- who is Deaf -- and her sign-language interpreter, is deployed to Baton Rouge to spend approximately the next three months working with the response and recovery team out of the Joint Field Office. For Gordon, it’s all about making sure that people with disabilities have access to the same services as everyone else. She insists that contractors, NGOs, and local officials understand that people with disabilities “aren’t asking for favors, they’re asking for the same thing as people without disabilities.”
The problems she encounters are many. For example, Deaf people in the shelters can’t hear announcements, such as those telling them where to go to register for disaster-relief benefits. The travel trailers being transported in aren’t physically accessible for individuals who use wheelchairs or who might use walkers. For example, some are being installed on gravel, or are too narrow for someone in a wheelchair to turn around in, or have steps that are not wide enough for someone who uses a walker. They need ramps, larger mobile homes instead of the compact trailers, accessible sites on level ground, visual smoke alarms for Deaf individuals and audio alarms for the blind, and so much more.
Homes matter. They offer families some privacy and a first step back towards normalcy, but not for too many people with disabilities. Gordon sees that in some cases, families have to choose to send their elderly parent to a nursing home, or in the case of a young child with disability, their stay in shelters are prolonged indefinitely. No one, Gordon thinks, disabled or not, should have to make a choice between housing and keeping one’s family together.
At a moment like this, Gordon thinks back to her childhood in Jamaica. She lost her hearing at age 8 and quickly was plunged into isolation, pulled from school, and “thought she was the only Deaf person in the world.” But her mother had gone to America and eventually earned enough money to bring her daughter from a wooded hilltop community on the island to the South Bronx, then enrolled her at the Lexington School for the Deaf. There, presented with a community of Deaf people for the first time, she found her new identity and new levels of determination. She worked furiously to learn sign language, to fit in, and eventually to thrive. She knows what it’s like to be abandoned. She’s learned the skills and acquired the grit to make sure it doesn’t happen to anyone else, not if she can help it.
So Gordon gets to work. If a contractor promises to work 24/7 to build accessible mobile home sites, she makes a surprise visit to the work-site at 1 am. She explains the need for key accommodations. She uses diplomacy, data, reason, and, most of all, personal anecdotes to explain what has to happen and why. It’s the stories of specific families, rather than the abstract discussions of disabilities and needs, that persuades and motivates the relief workers.
The effort required for those 1 am visits to the job sites and the ruffling of feathers pays off. Gordon watches as the first five families in need leave the shelters for newly accessible mobile homes. A little girl in a wheelchair rolls up to an accessible sink, turns on the water, and smiles. Remembering that day, Gordon says, “We celebrated small victories as an indicator of progress.”
Since then, the victories haven’t always been so small. Gordon won an award for her service at DHS and was the primary author of an executive order on emergency preparedness and people with disabilities. She eventually went to work for the Department of Labor's Office of Federal Contract Compliance Programs where she’s fighting for the civil rights of all American workers and has worked at the White House building connections among disability civil rights communities in the Office of Public Engagement. The intersections between her identities as a black, Deaf, female, immigrant significantly shapes her passion for civil rights. She uses her story to educate others about the exclusion that people with disabilities experience and to inspire hope. She says, “I want to be a vehicle for change.”
Tatyana McFadden had a fear of going too fast. Racing downhill at 30 miles per hour in an aluminum, three-wheeled racechair would be enough to scare most people. But for Tatyana’s competitors at the Boston Marathon, going fast was an opportunity to feel the wind cool their bodies and rest their spent arm and shoulder muscles, if only for a moment.
An April rain shower fell at the start of the 2015 race in Boston, promising the wheelchair racers slippery roads and a stiff headwind. McFadden’s rivals flew by her as she braked steadily on the course’s early downhill sections. A fall on these roads would be dangerous. Spandex and a lightweight helmet were her only body armor. On the uphill stretches, however, she easily caught up with her competitors, sometimes even taking the lead. The ascent-heavy course and the day’s adverse weather conditions played to McFadden’s strengths: powerful arms, mental discipline, and a refusal to quit.
Up ahead, the infamous Heartbreak Hill came into view. This meant she would soon pass mile 20. She dug deep, propelling her racechair forward with steady thrusts. McFadden’s confidence grew as she passed the shops on Center Street and began the notorious half-mile ascent. This was the spot where many racers “hit the wall,” their muscles refusing to work any more. But McFadden had won the past two Boston Marathons and wanted to make this her third in a row. Even if her time would suffer due to this year’s sloppy weather, she was determined to win.
The Prudential Tower with its distinctive twin radio antennas came into view as McFadden cleared the summit of Heartbreak Hill. She relaxed into the downhill, carefully braking in order to avoid exceeding 30 miles per hour. The last mile carried her through the jubilant crowds into Kenmore Square. Up ahead, she glimpsed the finish line at the base of Hancock Tower, its blue glass walls shimmering against the overcast sky. McFadden raised her left hand in victory as she broke the finish tape at 1:52:54, nearly a minute ahead of the second place finisher.
Despite her a fear of high-speeds, McFadden didn’t slow down. The next afternoon she flew to England and a few days later won the London Marathon for the third consecutive time. She was crowned the International Paralympic World Champion after setting an all-time course record.
These wins are just the start for this 26 year-old elite athlete. She has won eleven Paralympic medals in her career and is already setting her sights on six events, including sprints and the marathon, at the 2016 Paralympic Games in Rio de Janeiro.
McFadden was born with spina bifida in Russia and placed in a St. Petersburg orphanage when the ADA passed in 1990. As a six-year old, she was adopted by Deborah McFadden, who was at the time the Commissioner of Disabilities for the U.S. Department of Health and Human Services, and emigrated to America. She attended high school in Maryland and worked hard to become a stronger racer. But even after medaling at the Athens Games in 2004, her high school track and field team denied her a spot. Citing safety concerns, the high school only allowed her to participate in segregated competitions. With the help of her mother and the ADA, she sued the school system and lobbied the state for help. First, a judge forced the school to integrate its sports system. Then Maryland passed the Fitness and Athletics Equity for Students with Disabilities Act, which later became federal law.
McFadden’s lawsuit also set an example closer to home. “My younger sister has a prosthetic leg and when she wanted to join the high school track team, she could. She was given a uniform, raced alongside others, got to go to states and the school wasn’t disqualified. She made friends and had the time of her life,” says McFadden.
McFadden demonstrates what activists call the “social model of disability.” When she wanted to compete in sports, she wasn’t prevented by her spina bifida, but by discrimination. She is a leader of the ADA generation—people who were born or came of age after 1990. “We have job rights, sports rights, everything,” she says. “Anything that a person with disabilities wants to do, they have the right to do. That can change the world.”
On March 12, 1990, activists with disabilities pulled themselves up the 83 stone steps at the Capitol Building to demand equal rights. “The Capitol Crawl” symbolized the barriers confronting people with disabilities and helped propel the Americans with Disabilities Act into law. The bill passed on July 26, 1990.
For the 25th anniversary of the ADA, we celebrated the spirit and vigilance of the leaders of the Disability Rights Movement, both past and present.
A station wagon rolled up to Burlingame High School in Burlingame, California at lunchtime. A young man was unloaded from the car by his family, who carefully supported his head, his back, and his legs while doing so. For the past few years he had been so terrified of being stared at that he had not wanted to leave the house. Arriving in the lunch courtyard, where hundreds of students were gathered, he looked up, and his worst fear was realized. Everyone turned to gawk at him. “When I looked up at them, they looked away,” he recalled.
The man was Ed Roberts, who was then in his senior year of high school. As a young boy, he had loved football and baseball, and was the fastest kid on the block. But at age 14, in 1953, polio paralyzed him from the neck down. From then on, he used an iron lung to breathe and a wheelchair to move around. His doctor said he’d be a vegetable.
Though his arrival at the Burlingame High campus was initially terrifying, he would in later interviews return to this moment. It sparked a transition from a boy wallowing in self-pity to the visionary leader he eventually became. “Something remarkable occurred to me,” he said. “The first thing was that it didn’t hurt. For people to stare at me did not hurt me. The second thing was that maybe it wasn't all my problem, because when I looked back, they would look away. As I thought about that, why was I taking all this on as my problem when wasn't the fact they stared also their problem?”
And then he realized something else—that the attention could turn him into a star. “I think that was one of the more important times in my life, that I realized I could enjoy it. I didn't have to feel guilt or anger,” he said. “Actually, I could enjoy being stared at if I thought of myself as a star, not just a helpless cripple.”
A few years later, he started college at U.C. Berkeley and quickly convinced the university to let him take up residence in an old hospital wing. Soon, other disabled students arrived to build on Roberts’ improvised accommodations. They initially called themselves the Rolling Quads—named for quadriplegics in wheelchairs— which he later organized into the Physically Disabled Students Program. The PDSP eventually became the Center for Independent Living, which extended its benefits beyond the confines of the campus and helped make Berkeley into one of the most accessible cities in the world. Later, Roberts became Director of Rehabilitation Service in California, co-founded the World Institute on Disability with Judy Heumann, served as an inspirational leader in the fight for the ADA, and travelled the world to learn and teach wherever he went. He passed away in 1995, having seen the ADA realized five years earlier.
Heumann, a legend of the disability rights movement herself, remembers the power of his dark eyes.”He had a great smile and he could draw you in with his eyes and he totally knew that,” said Heumann. He knew how to work people, really, really well.” He knew that people were going to stare at him, so he’d stare right back. Roberts said, “I became a star. I just assumed that position.”
It was the summer of 1969, and big things were happening: Vietnam War protests, the Stonewall Riots, Woodstock,even an astronaut on the moon. Twenty-something Judy Heumann sat in her wheelchair in her family’s Brooklyn apartment. She was holding an envelope. The ominously thin sleeve of paper from the New York State Board of Education had arrived that Monday.
She had recently graduated from Long Island University and wanted to become a teacher. She had studied hard and persuaded friends to carry her up and down flights of stairs for the written and oral portions of the teacher’s exam. But when it came to the medical portion of the test, she didn’t stand a chance. Heumann had contracted polio as an infant and relied on a wheelchair for mobility. She could not walk. She could not easily evacuate a building in the event of an emergency.
Heumann peered at the envelope and carefully opened it. The letter inside read: Certification denied for “paralysis of both lower extremities sequelae of poliomyelitis.”
“I had to make a decision about whether I was going to pursue getting my teaching license or whether I was just going to let it drop,” Heumann said. In the fourth grade the principal of P.S. 197 in Brooklyn had declared her a fire hazard and attempted to prohibit her from attending his school. At her high school graduation, another principal had tried to prevent her father from pulling her and her wheelchair up a short flight of steps to the stage so that she could receive an award during the commencement ceremony. There was no way Heumann could accept the Board of Education’s decision.
The next day Heumann contacted a college friend who was working as a stringer at The New York Times. On Wednesday the newspaper ran an article describing the discrimination she had experienced . On Thursday, the Times went further and published an editorial in her defense. A New York Daily News headline blared, “You Can Be President, Not Teacher, with Polio” and compared her to Franklin D. Roosevelt. Seventeen other newspapers published op-ed pieces supporting her.
Heumann’s phone began to ring almost incessantly. “My name is Roy Lucas,” the caller said. “I’m an attorney writing a book on constitutional law and I’d like to interview you.”
“Well, I’d like to interview you,” Heumann said with her usual chutzpah. By the time the call ended, Lucas had agreed to represent her pro bono. He partnered with attorney Elias Schwartzbar, a customer in her father’s butcher shop, to represent Heumann in her first lawsuit. By 1971, Heumann was teaching at her old Brooklyn elementary school, P.S. 219. She became the first teacher in New York State to use a wheelchair.
Six years later, Heumann wheeled herself through the doors of the U.S. Department of Health, Education and Welfare in San Francisco. She’d led protests that blocked traffic on Madison Avenue and swarmed Richard Nixon’s campaign headquarters to help pass the Rehabilitation Act, which linked the lack of access to buildings and services to discrimination against people with disabilities. But a slow-moving Congress had yet to define what inclusion looked like on buses, in schools, and in public spaces. Along with disability advocates like Ed Roberts and Kitty Cone, Heumann led 150 people with disabilities in a 28-day sit-in, the longest takeover of a federal building in American history. It culminated in a trip to Capitol Hill, public hearings, and finally, victory. Activism plus collaboration with politicians was working. Thanks to Heumann’s leadership, the Americans with Disabilities Act would soon become possible.
Today, Heumann serves as Special Advisor for Disability Rights in the State Department and is working to teach people around the world the best practices enshrined in the ADA. Her journey to advocacy from this global stage can be traced to that moment more than 40 years ago when she decided to fight discrimination. “It was the first real time that I really had to step forward. I wanted to be a teacher.”
It was a hot, swampy July day on the South Lawn of the White House. Shade from the sun was scarce and a row of ambulances idled nearby in case anyone got sick from the heat. Meanwhile, Justin Dart Jr. sat on a platform. With his trademark cowboy hat shielding his eyes, he looked out at over 3,000 people who had gathered to watch the Americans with Disabilities Act be signed into law. It was the biggest crowd to attend a bill signing ceremony in White House history. He was supposed to feel euphoric. Instead, as he later told author Fred Pelka1, he was only worried about the future.
He had only found out that morning he would be on the platform, and he wasn’t sure it was at all appropriate. He thought of all the other people who should have been up there with him. But it was basically just him and Employment Opportunity Commission chairman Evan Kemp, two men in wheelchairs, representing the entire disability community. It was a little awkward, but that wasn’t the real reason he felt uncomfortable.
He listened as President George H. W. Bush offered soaring rhetoric, describing the crowd as “a splendid scene of hope.” Bush said, “Three weeks ago we celebrated our nation's Independence Day. Today, we're here to rejoice in and celebrate another ‘independence day,’ one that is long overdue.”
A few minutes after his speech, the president sat at his ceremonial desk, Dart just to his left. Bush reached out with his left hand and Dart clasped it in both of his. Moments later, Bush signed the first part of his name -- George -- on the bill and handed the pen over to Dart, offering him a keepsake to treasure. The artifact represented the consequences of years of activism. Dart knew he should feel proud, and he did. But as the president finished signing his name, Dart was mostly thinking about the battles to come.
In the years leading up to the passage of the ADA, Justin Dart and his wife Yoshiko spent years travelling to every state in the country between four and twenty times. Sometimes they met with three people, sometimes thousands, but each time they solicited testimony from people with disabilities on the discrimination they encountered. Dart delivered that testimony to members of Congress in dramatic public hearings, demonstrating the specific human cost of inaction. Moreover, he took advantage of his political connections within the Republican establishment to lobby for the ADA, finding members of the right-wing establishment whose personal connections with disability might form a bulwark against business interests only concerned with cost.
It worked, the bill passed, but still, he was worried that day. Dart later explained that he had asked himself, “What if we did it too soon? What if we can’t carry it off, and it is perceived to fail?” He knew at that point that he would never rest easy. He went to the celebrations for the new law, but did not feel euphoric. Instead, he felt the heavy weight of responsibility to make the ADA work.
Fortunately, he didn’t have to carry that weight alone. Dart spent the remainder of his life encouraging young activists like Claudia Gordon and Tia Nelis to lead, to speak, and to organize. He may have felt lonely on the stage with President Bush, Kemp, and a few others, but he spent his next decade surrounded by the community he had helped create. On his last video interview six and a half days before his death, he said, "I want to be remembered as a unifier."
After the signing ceremony, Dart started referring to the ADA as “a promise to be kept.” Twenty-five years later, Justin Dart Jr. is no longer with us, but thousands of people work every day in order to help our nation keep that promise.
Senator Tom Harkin was six years old when the state took away his big brother. Frank had lost his hearing from spinal meningitis and was sent to the Iowa School for the Deaf in Council Bluffs. The imposing three-story red brick building and 100-acre campus were more than 150 miles from the one-room school house in their hometown of Cumming. People referred to it as ‘the school for the Deaf and dumb.’ Frank came home and complained to his younger brother, “I may be Deaf but I’m not dumb.”
Frank would board during the school year, coming home only for Christmas and Easter vacations. Gone was the brother whom the other four Harkin children loved and admired. When Frank reached high school, the guidance counselor said he could be a baker, a shoe cobbler, or a printer’s assistant. Frank protested, “ I don’t want to be any of those things.”
“Ok,” the school counselor said, “You’ll be a baker.”
Frank went to work in a small bakeshop in West Des Moines. One bright spot in his circumscribed existence was the man who came in for donuts each morning. They would strike up a conversation of sorts across the glass counter. Neither of them knew sign language but Frank could read lips.
“How do you like baking?” the man asked one day.
“I hate it,” Frank replied. “I want to work with my hands and machines.”
“Then come work for me,” the man said. His name was Mr. Delavan, owner of a small manufacturing plant that employed 200 people. Frank learned to operate a machine that drilled precise holes in jet engine nozzles.
After a few months, Delavan asked his foreman, “How’s Frank doing?”
“Amazing,” the foreman replied. “This guy always shows up on time, never leaves early, and puts out more parts per hour than any employee, and he never makes a mistake.”
Delavan was astounded and questioned his prized employee. While other workers were distracted by the clinking, clanking and banging of metal and machinery, Frank’s Deafness allowed him to concentrate solely on the task at hand.
Frank’s struggles laid the foundation for Harkin’s entry into politics and eventually his leadership of the Americans with Disabilities Act (ADA), which he co-authored with Senator Bob Dole of Kansas. When introducing the bill, Harkin used sign language to address his Senate colleagues: “I wanted to say to my brother Frank that today was my proudest day in 16 years in Congress.'' Throughout the long process to pass the bill, Harkin found allies in other lawmakers, like Dole, who had personal experiences with disability.
Frank would pass away from cancer 10 years after passage of the ADA. “To the day he died,” Harkin says, his eyes brimming with tears, “I don’t think that Frank ever felt that life gave him a fair shake. Frank would be so proud to see kids going to mainstream schools and not being sent away from home to some school halfway across the state.”
One of the top-rated episodes of the old tv series Lassie involves a young girl named “Kathy.” She is Blind and fears walking alone down a woodland trail. Eventually, the famous collie helps Kathy summon the courage to enter the forest of oaks, pines and fragrant wildflowers. She stumbles and falls but Lassie, naturally, is there to urge her forward with an encouraging bark. In reality, the child actress isn’t at all afraid of the forest. If she is scared of anything, it’s hearing the director yell, “Cut!” and then having to do another take. Her knees ache from having to fall over and over again during the week-long production.
Kathy was played by Kathy Martinez, who, like her namesake character on the show (a coincidence, she says), was born Blind. She is one of six kids and both parents worked several jobs. Martinez was paid the Screen Actors Guild rate, a paycheck that represented a fortune compared to the money she earned from odd jobs in the neighborhood. At the time, she was learning to play the clarinet and proudly paid off the installment plan to purchase the instrument. Her mother loved onion rings and her brothers and sisters liked the tacos at the local Jack-in-the-Box, so she treated her family. “Appearing on Lassie was the beginning of my realization that if I was able to have money, it would make my life easier,” Martinez says. “It inspired me to work.”
Martinez’s desire for work led to an assembly line job at a lock factory after high school, and later to college so that she could qualify for higher paying jobs. Then in April 1977, she happened to be in San Francisco for mobility training at a center for the Blind. “I received a flyer in Braille announcing a rally. It said ‘Fight for Your Civil Rights.’”
The rally became a 28-day takeover by 150 people of the U.S. Health, Education and Welfare offices. They were protesting the Carter Administration’s four-year delay in making buildings, transportation and public spaces accessible as required by Section 504 of the Rehabilitation Act. Martinez arrived on day two of the protest and found solidarity with the crowd outside: people with physical and psychiatric disabilities, some Black Panthers, LGBT community members, Glide Memorial Church staff, and even the workers of a supermarket chain who were delivering food to those inside. “It was the bridge for me to the disability rights movement. I had worked as a farm worker activist and been involved in the women’s movement, but I had always thought that if you were disabled you just had to deal with it. Now, I had found a place where it was ok for me to be Blind, Latina and lesbian.”
Today, Martinez proudly cites all her identities as she works at a major bank to increase employment diversity in the private sector. She’s travelled the world, served on the National Council on Disability, and been Assistant Secretary of Labor. But she’s always remembered the lessons from Lassie and the lock factory. Jobs matter.
Despite the ADA, unemployment among people with disabilities remains nearly double the rate of non-disabled people. Getting people hired, Martinez says, will require changing companies’ attitudes about workplace accommodations. “What people don’t realize is that we are all accommodated. I use a screen reader to do my job, a sighted person uses a mobile phone or a laptop. We need to start calling all of these things productivity tools. That’s what they are.”
In many ways it’s the same challenge faced by the producers of Lassie when they issued a casting call through the Braille Institute in Los Angeles. “They held honest-to-God auditions,” Martinez says. “It took a lot of courage for the producers to hire blind kids in 1969, instead of sighted actors.” In the end, the accommodations for the Blind children were no big deal, and the young actors delivered a top-rated episode.
Patrick Kennedy pauses halfway up the stairs leading to his library. Three sections of a massive wooden mast, each perhaps a dozen feet long and a foot or two in diameter, tower above him, secured against the wall with stout iron mounts. When joined, these sections would guide his late father Senator Ted Kennedy’s beloved schooner, the Mya.
Looming over his shoulder is another family artifact: A thin necktie, green with narrow, diagonal white stripes, protected by glass inside a black shadowbox. It belonged to his late uncle, President John F. Kennedy, and was worn by him while campaigning in 1960. “I often wore this tie during my first term in Congress,“ he says as he resumes climbing the stairs. Today, his attention is focused elsewhere.
“Here it is,” he says upon entering the library. He removes a lacquered magazine cover hanging on the wall and holds it at arm’s length. It shows President Kennedy signing the Community Mental Health Act. In a room filled with memorabilia of people who charted a course to the moon, championed civil rights, abolished the federal death penalty, led the way on healthcare reform, and served at the highest levels of government for three generations, this is the most important item to Kennedy right now.
“The mentally ill need no longer be alien to our affection or beyond the help of our communities,” he recites from memory in his attic library. The words were first spoken by his uncle in 1963 but continue to resonate deeply with Kennedy.
He is also keenly aware of his father’s role in muscling the ADA through Congress. “It was my dad's belief that we were part of the continuing progress in America, of expanding the circle of opportunity for each generation.”
While the ADA expanded greatly the circle of opportunity for people with disabilities, there’s still more to do. “We need to find new ways of accommodating people with mental illnesses, intellectual disabilities, and those who suffer from substance use disorders. They need to be accommodated in the same way we accommodate all disabilities, because when we do, we maximize the opportunity for those people to fully participate in America.”
Kennedy served Rhode Island as a Congressman from 1995 to 2011 and while on Capitol Hill continued his family’s advocacy for disability rights. Notably, he authored the Mental Health Parity and Addiction Equity Act, which requires insurance companies to provide the same level of benefits for the care of psychiatric disabilities as for other medical and surgical procedures. On another wall in his library, Kennedy has framed the pen given him as a thank you gift by President George W. Bush after he signed the law.
Since leaving Congress, he’s founded the Kennedy Forum on Community Mental Health, a policy group, and he’s co-founded One Mind for Research, a scientific organization. One Mind embraces advances in open science, computing power, big data analytics and low cost genomics for its research efforts – two of them are dubbed “Gemini” and “Apollo,” and they seek to better understand post traumatic stress and traumatic brain injury. “I say we need a NASA for inner space,” Kennedy says, invoking the urgency of President Kennedy’s moon shot speech.
He is also working to end the stigma associated with all psychiatric disabilities, from autism to neurodegenerative disorders to addiction. Too often, he says, “We ascribe symptoms of behavior as character flaws, not as brain chemistry issues,” and then marginalize those people with them. In 2006, Kennedy publicly disclosed that he had been diagnosed with depression and bipolar disorder, and he described a fear, held by many with psychiatric disabilities of being “labeled” as someone with a mental illness. He sees overcoming attitudinal barriers and social discrimination as the next step for strengthening the ADA.
“We're now on the cusp of expanding what we understand to be a disability to include those invisible disabilities, the ones that we can't necessarily accommodate with the curb cut,” Kennedy says. “This is an issue of equal rights. It’s a medical civil rights issue.”
A conference room at the Marriott Hotel in Schaumburg, Illinois was as good a place as any to try and change the world. At least, that was the plan of a small group of self-advocates, people with cognitive disabilities determined to seize control of their own lives. They had recently volunteered to form the steering committee of a new national organization, so new they hadn’t even named it yet. But when the meeting began, the voices of Tia Nelis, a self-advocate from Illinois, and the others were drowned out by an unlikely source—their own supporting advisors.
Nelis had endorsed the idea of a national organization with some hesitation. It was a more ambitious endeavor than the state and local groups that had come before. “It was very scary to us,” said Nelis. “We didn’t know if we were making a difference starting something bigger than state level. Me and my friend Nancy from Nebraska were kind of freaked out about it.”
But the stakes were high. The ADA had been passed on July 26, 1990, just nine months before the Schaumburg meeting, and the disability community was celebrating the promise of a more accessible world. The people in the meeting room, however, felt overlooked. They weren’t sure that the ADA would meet their needs or empower them. Even the well-intentioned often spoke on behalf of people with intellectual disabilities, rather than helping them find their own voice.
That’s what was happening in the meeting. The advisors kept talking over their clients. They rambled on about mission statements, bylaws, and committees. Goals, funding, and workflow. Sure, the advisors were excited about the ambitious project and wanted to help, but they were missing the point of self-advocacy. It was time for a drastic measure.
“We got really mad because all the support people were talking and they were taking over. They were talking too much. So we decided to ask the support people to leave the room,” Nelis said. Then some of the self-advocates got scared. “They thought that if they asked people to leave the room, that they might not come back. Sometimes people are your friends until you disagree with them, and then they don’t come back to support you.”
Nelis quickly clued in some of her most trusted advisors, who reassured the group that real friends always come back. Then Nelis, along with her friend Nancy Ward, sent the support staff out of the room for two hours. When the staff returned, most of the organizing was done, and Self-Advocates Becoming Empowered (SABE) was on its way to becoming a reality, its name chosen and mission statement drafted. Nelis and Ward were elected SABE’s first leaders.
Nelis and the other advocates learned an important lesson about finding their voices, ”It gave us courage then to know that we can do it, and that people who are really going to support you will be there in the long run. It’s ok to disagree. You can speak your mind and say what you want.”
Since then, Nelis has been speaking her mind plenty. Eight years later, she camped out on the steps of the Supreme Court to hear whether the justices would agree that living in a community, rather than an institution, was a civil right. Once they did, in the Olmstead case, she took the message nationwide. As the current Self-Advocacy Specialist at the Institute on Disability and Human Development at the University of Illinois - Chicago, she helps the world “to get rid of the labels that hurt people.” People with disabilities, she says, are people first -- not just “patients and clients, but friends and neighbors.”
It’s three weeks after Hurricane Katrina has hit New Orleans and Claudia Gordon is worried. From her perch at the Office for Civil Rights and Civil Liberties at the Department of Homeland Security in Washington, she and her colleagues are working frantically to coordinate the emergency response for people with disabilities who were in the path of the brutal hurricane. But on the ground in Louisiana, there’s just too much one-size-fits-all thinking. People with disabilities are being abandoned, forgotten, or isolated from their families.
So Gordon -- who is Deaf -- and her sign-language interpreter, is deployed to Baton Rouge to spend approximately the next three months working with the response and recovery team out of the Joint Field Office. For Gordon, it’s all about making sure that people with disabilities have access to the same services as everyone else. She insists that contractors, NGOs, and local officials understand that people with disabilities “aren’t asking for favors, they’re asking for the same thing as people without disabilities.”
The problems she encounters are many. For example, Deaf people in the shelters can’t hear announcements, such as those telling them where to go to register for disaster-relief benefits. The travel trailers being transported in aren’t physically accessible for individuals who use wheelchairs or who might use walkers. For example, some are being installed on gravel, or are too narrow for someone in a wheelchair to turn around in, or have steps that are not wide enough for someone who uses a walker. They need ramps, larger mobile homes instead of the compact trailers, accessible sites on level ground, visual smoke alarms for Deaf individuals and audio alarms for the blind, and so much more.
Homes matter. They offer families some privacy and a first step back towards normalcy, but not for too many people with disabilities. Gordon sees that in some cases, families have to choose to send their elderly parent to a nursing home, or in the case of a young child with disability, their stay in shelters are prolonged indefinitely. No one, Gordon thinks, disabled or not, should have to make a choice between housing and keeping one’s family together.
At a moment like this, Gordon thinks back to her childhood in Jamaica. She lost her hearing at age 8 and quickly was plunged into isolation, pulled from school, and “thought she was the only Deaf person in the world.” But her mother had gone to America and eventually earned enough money to bring her daughter from a wooded hilltop community on the island to the South Bronx, then enrolled her at the Lexington School for the Deaf. There, presented with a community of Deaf people for the first time, she found her new identity and new levels of determination. She worked furiously to learn sign language, to fit in, and eventually to thrive. She knows what it’s like to be abandoned. She’s learned the skills and acquired the grit to make sure it doesn’t happen to anyone else, not if she can help it.
So Gordon gets to work. If a contractor promises to work 24/7 to build accessible mobile home sites, she makes a surprise visit to the work-site at 1 am. She explains the need for key accommodations. She uses diplomacy, data, reason, and, most of all, personal anecdotes to explain what has to happen and why. It’s the stories of specific families, rather than the abstract discussions of disabilities and needs, that persuades and motivates the relief workers.
The effort required for those 1 am visits to the job sites and the ruffling of feathers pays off. Gordon watches as the first five families in need leave the shelters for newly accessible mobile homes. A little girl in a wheelchair rolls up to an accessible sink, turns on the water, and smiles. Remembering that day, Gordon says, “We celebrated small victories as an indicator of progress.”
Since then, the victories haven’t always been so small. Gordon won an award for her service at DHS and was the primary author of an executive order on emergency preparedness and people with disabilities. She eventually went to work for the Department of Labor's Office of Federal Contract Compliance Programs where she’s fighting for the civil rights of all American workers and has worked at the White House building connections among disability civil rights communities in the Office of Public Engagement. The intersections between her identities as a black, Deaf, female, immigrant significantly shapes her passion for civil rights. She uses her story to educate others about the exclusion that people with disabilities experience and to inspire hope. She says, “I want to be a vehicle for change.”
Tatyana McFadden had a fear of going too fast. Racing downhill at 30 miles per hour in an aluminum, three-wheeled racechair would be enough to scare most people. But for Tatyana’s competitors at the Boston Marathon, going fast was an opportunity to feel the wind cool their bodies and rest their spent arm and shoulder muscles, if only for a moment.
An April rain shower fell at the start of the 2015 race in Boston, promising the wheelchair racers slippery roads and a stiff headwind. McFadden’s rivals flew by her as she braked steadily on the course’s early downhill sections. A fall on these roads would be dangerous. Spandex and a lightweight helmet were her only body armor. On the uphill stretches, however, she easily caught up with her competitors, sometimes even taking the lead. The ascent-heavy course and the day’s adverse weather conditions played to McFadden’s strengths: powerful arms, mental discipline, and a refusal to quit.
Up ahead, the infamous Heartbreak Hill came into view. This meant she would soon pass mile 20. She dug deep, propelling her racechair forward with steady thrusts. McFadden’s confidence grew as she passed the shops on Center Street and began the notorious half-mile ascent. This was the spot where many racers “hit the wall,” their muscles refusing to work any more. But McFadden had won the past two Boston Marathons and wanted to make this her third in a row. Even if her time would suffer due to this year’s sloppy weather, she was determined to win.
The Prudential Tower with its distinctive twin radio antennas came into view as McFadden cleared the summit of Heartbreak Hill. She relaxed into the downhill, carefully braking in order to avoid exceeding 30 miles per hour. The last mile carried her through the jubilant crowds into Kenmore Square. Up ahead, she glimpsed the finish line at the base of Hancock Tower, its blue glass walls shimmering against the overcast sky. McFadden raised her left hand in victory as she broke the finish tape at 1:52:54, nearly a minute ahead of the second place finisher.
Despite her a fear of high-speeds, McFadden didn’t slow down. The next afternoon she flew to England and a few days later won the London Marathon for the third consecutive time. She was crowned the International Paralympic World Champion after setting an all-time course record.
These wins are just the start for this 26 year-old elite athlete. She has won eleven Paralympic medals in her career and is already setting her sights on six events, including sprints and the marathon, at the 2016 Paralympic Games in Rio de Janeiro.
McFadden was born with spina bifida in Russia and placed in a St. Petersburg orphanage when the ADA passed in 1990. As a six-year old, she was adopted by Deborah McFadden, who was at the time the Commissioner of Disabilities for the U.S. Department of Health and Human Services, and emigrated to America. She attended high school in Maryland and worked hard to become a stronger racer. But even after medaling at the Athens Games in 2004, her high school track and field team denied her a spot. Citing safety concerns, the high school only allowed her to participate in segregated competitions. With the help of her mother and the ADA, she sued the school system and lobbied the state for help. First, a judge forced the school to integrate its sports system. Then Maryland passed the Fitness and Athletics Equity for Students with Disabilities Act, which later became federal law.
McFadden’s lawsuit also set an example closer to home. “My younger sister has a prosthetic leg and when she wanted to join the high school track team, she could. She was given a uniform, raced alongside others, got to go to states and the school wasn’t disqualified. She made friends and had the time of her life,” says McFadden.
McFadden demonstrates what activists call the “social model of disability.” When she wanted to compete in sports, she wasn’t prevented by her spina bifida, but by discrimination. She is a leader of the ADA generation—people who were born or came of age after 1990. “We have job rights, sports rights, everything,” she says. “Anything that a person with disabilities wants to do, they have the right to do. That can change the world.”
Couldn’t make it to Washington DC to see the installation live? Take a tour of the locations and learn about each celebrated leader through our Maps experience.
Take the Tour
In partnership with the American Association of People with Disabilities, the work associated with this campaign, along with artifacts from the Disability Rights movement, are being made into an exhibition on Google's Cultural Institute. At the Cultural Institute, visitors will be able to learn more about each leader and the historic movement that led to the passing of the ADA.
