Celebrating those who asked, “What if we could create a more inclusive world
for everyone?”
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.”
Taking steps to honor leaders of the Disability Rights Movement.
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.
Ed Roberts: The Star
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.”
Judy Heumann: The Good Teacher
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.”
Justin Dart: The Unifier
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: For the Love of Frank
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.”
Kathy Martinez: A Desire to Work
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: A Race for Inner Space
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.”
Tia Nelis: The Self-Advocate
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.”
Claudia Gordon: After the Storm
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: Marathons and Sprints
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.”
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Take the tour from anywhere with Google Maps.
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.
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.