Disability Rights Journalist Shapiro Gets it 'Write'
By Mike Ervin
The man who wrote the definitive history of the disability
rights movement has no disability himself.
Joe Shapiro is the author of “No Pity: People with
Disabilities Forging a New Civil Rights Movement," published in 1993. Shapiro,
who was raised in a middle-class neighborhood in the nation's capital,
remembered Washington, D.C., as "an exciting place to grow up.” 
“I remember being on Pennsylvania Avenue for parades
to welcome home astronauts, for John F. Kennedy’s funeral and to protest
the war in Vietnam,” he said.
Witnessing so much history made him want to be a
journalist. After attending Carleton College in Minnesota and majoring in
American studies, Shapiro spent a summer helping a friend start a weekly
newspaper in an Iowa town of 1,200. Then he went to Columbia University for a
year of graduate school.
In 1986, Shapiro landed his “dream job” as Rome
bureau chief for U.S. News & World Report magazine. But financial
pressures shut the bureau down less than a year later, and Shapiro returned to
the magazine's Washington headquarters. It was a time when the disability
rights movement was really catching fire, mostly under the radar of the
mainstream press. Shapiro took notice and chronicled the stories of the people
involved in the movement, eventually carving out a journalistic niche.
“It was pure accident that I started writing about
disability," he said. "I was assigned to write about social policy, but there
were already other reporters doing the two biggest parts of it, health and
welfare, so I was scrounging around to find something to cover. “
Today, Shapiro is a correspondent on the science desk of
National Public Radio and covers aging, disability and children and family
issues. He continues to report about disability with a clarity and empathy
unparalleled in the mainstream media.
Q: When you were growing up, were there any moments
or events that caused you to “get” the disability thing?
A: Did I “get” the “disability
thing” when I was a kid? No way. My mother would tell you otherwise. At
the book party for “No Pity,” which was filled with important
disability civil rights figures, my proud mother told Judy Heumann and anyone
else who listened that as a kid I’d gone out of my way to be kind to
“Albert the crippled paperboy.” Ouch. I’d completely forgotten
about him. And I’m not sure what I ever did for him. He was an older teen
with cerebral palsy who delivered the afternoon paper.
Growing up, I didn’t know people with disabilities.
My interactions were pretty traditional. One of the first times I can remember
thinking about disability was, at about age 10, raising money for the Jerry
Lewis telethon. I think my sister and I came up with about $6. I don’t
remember getting thanked by Jerry.
In high school, I was a member of a service organization.
I remember going to the segregated special ed school which still exists in D.C.
I drive by it on the way to work. We’d take kids in wheelchairs fishing.
I’m sure I felt good about helping out.
At Carleton, I joined a group who volunteered at Faribault
State Hospital, a state institution for children with intellectual
disabilities. At the time -- early 1970s -- Minnesota was talking of moving
people into group homes. We got a house on campus and drove a big turquoise
1967 Cadillac with fins down to the institution. We’d bring two kids a
night up to the house to experience what it meant to live in a house, eat
family style at a table, use a private bathroom and “adjust” to
living in a house, not in an institution, where you shared a cot in a room with
three dozen other people. The idea was that the kids would stay overnight with
us, model our behavior, and that would help them succeed in a group house. Not
that modeling after 12 college kids would teach someone how to live in any kind
of optimal way. I probably went into this thinking it was another kind of
do-good service activity. But this time, I really got to know someone with a
disability. I worked with a 12-year-old named Jim Gordien, who’d lived in
the institution from the time he was 6.
Q: What was the first disability-angle story you
wrote?
A: I tell the story in “No Pity” how I
got a call from Arney Rosenblat, a PR woman at the MS Society, in 1987 to
interest me in a story about some group of presidential appointees who were
drafting some law called the Americans with Disabilities Act. I went to a
Washington hotel where Justin Dart, Lex Frieden and others were talking about
access and rights barriers. I don’t think I’d quite understood it
all. I wouldn’t really get it until I left the hotel. There were two cabs
in line. The first picked me up. Behind me was a man in a wheelchair. The
driver of the second cab saw him and did a U-turn and sped away, leaving the
man. I watched through the back seat of my cab, and it all clicked. If this man
can’t get a cab, how can he get around? Washington’s subway is pretty
accessible, but it only goes so far.
I went back to my office at U.S. News and wrote my
first story about disability, about this thing called the disability civil
rights movement, how disabled people were rejecting traditional views of them
as objects of pity or inspiration, creating their own culture, saying their
issues were of rights, not health, and how they were trying to change both
physical barriers and attitudinal ones. I’d quoted important people from
Pat Wright to Cheryl Wade. It was well-written and interesting. My editor
thought it too far-fetched that people with disabilities had their own civil
rights movement. The story didn’t get printed.
That might have been the end of my attempt to write about
disability. But about three months later, students at Gallaudet University shut
down the school when the board of trustees refused to name a deaf person
president of the school. The Gallaudet protest got a lot of national attention.
For the first time, Americans were hearing about disability and civil rights in
the same sentence. I’ve always thought the Gallaudet protesters got
attention, and sympathy, because their leaders had preppy, all-American good
looks. They weren’t in wheelchairs or anything too scary to Americans who
don’t want to think about disability. I covered the Gallaudet protests for
U.S. News, and I then sold the earlier, unpublished story on the
disability civil rights movement to the Washington Post health section,
which did a special issue on Gallaudet and Deaf culture.
Q: What is it about this disability beat that
interests you so much?
A: I kept writing about disability issues because
there was always something fresh and interesting to say. I keep writing because
there is always a disability angle to any social policy issue. Seeing things
from a disability angle gives me a fresh and smart understanding of issues. The
people I met kept teaching me. It was self-advocates who first told me about
Johnny Lee Wilson, a man with a mild developmental disability who confessed to
a murder he didn’t commit. I went to Missouri and did reporting that
helped get Wilson released from prison. For NPR, I did a series on soldiers and
Marines back from Iraq and Afghanistan dealing with injuries. Those were all
disability stories -- the narratives about people dealing with physical
injuries, PTSD, head injuries and trying to live independently. If you did an
analysis of all my stories, the word that probably pops up most frequently,
other than disability, would be “independence.”
Q: How did "No Pity" come about?
A: In 1990, I got a grant from the Alicia Patterson
Foundation, which allowed me to take a one-year sabbatical to study and write
about the disability civil rights movement. I started with a trip to Berkeley.
I spent time at ADAPT rallies. I went to the first meeting of self-advocates
with intellectual disabilities in Connecticut. And I started to think about
whatever happened to Jim Gordien at Faribault. I figured he’d be living in
a group home or maybe his own apartment. I found he was still living in the
same cottage where I’d last seen him 16 years before. I flew to Minnesota
to see Jim. I asked him if he wanted to be part of “the community.”
He said yes, he’d seen others he’d lived with go to “the
community,” but he didn’t really know what it was. So I took him to
see group homes and community-based jobs. I pushed and got him out of the
institution. My Patterson year was the start of the reporting for "No Pity."
Q: How much of a struggle is it getting editors and
journalists to understand the newsworthiness of our stories? Has it gotten
better?
A: NPR hired me to write about disability, so, for
the most part, I don’t have difficulty getting interest at NPR in
disability stories. The ADA changed a lot. You can see it in the coverage of
disability. You don’t see flat-out pity or inspiration stories so much now
in the media. But you don’t see disability civil rights stories, either.
We get a strange mixture of the old and the new -- pity mixed with rights.
Journalists only partly get it. There’s still education to do.
Q: Do you consider yourself to be an activist?
A: I don’t think of myself as a disability
activist -- just someone who learned a lot from disability activists. As a
journalist, I always think of myself as an observer. But I feel fortunate to
have met and interviewed a lot of the important people who changed the way we
look at disability. And the best thing disability activists do is to be
patient, steady teachers. I know that’s not always easy when it looks like
disability issues get ignored. I think journalists want to get disability
issues. But we’re not brought up in a society to get it. I got things
wrong in some of my first stories. But there was always someone who was willing
-- patient and polite -- to explain what I didn’t quite get. A good
journalist will listen and get it the next time.
Mike Ervin is a writer and
member of ADAPT, a group that works for the civil rights of people with
disabilities. |
