Being Heumann An unrepentant memoir of a disability rights activist

Review by Booklist Review

The title says it all: disability-rights activist Heumann is human, though some may think her superhuman. One of the nearly 43,000 U.S. children affected by the 1949 polio epidemic, she is a paraplegic who has used a wheelchair since childhood. Fortunately, she grew up with remarkable parents, orphaned by the Holocaust, who refused to institutionalize her. Chillingly, she notes that Hitler's pilot project for what became mass genocide started with disabled children. But even in America, she faced many hurdles. In 1977, Heumann helped stage a historic sit-in over the failure to enforce section 504 of the Rehabilitation Act, which prohibits excluding anyone from a program that receives federal funds. The activists' pressure set the stage for the 1990 Americans with Disabilities Act, which is now in peril, Heumann notes, from a president who shut down the ADA pages on the White House website. Consider this book an inspiring call for inclusiveness, courage, equity, and justice as well as a reminder of people's power to change the world for the better.--Karen Springen Copyright 2020 Booklist

From Booklist, Copyright (c) American Library Association. Used with permission.

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Review by Publisher's Weekly Review

In this empowering debut, disability rights activist Heumann reveals her indomitable spirit as she battled prejudice and discrimination to gain equal opportunity. Recognizing that Americans with disabilities were "generally invisible in the daily life of society," Heumann, who was paralyzed by polio at 18 months in 1949, fought for inclusion in everyday activities, believing "it was the government's responsibility to ensure that everyone could participate equally in our society." Fighting to go to elementary school in Brooklyn after being called "a fire hazard," she first attended a segregated special education class before attending regular high school. Heumann attended Long Island University, where she led various student protests; after college, she won a lawsuit against the New York City Board of Education for denying her a teacher's license because of her condition. In 1977, she helped organize a 24-day sit-in at the San Francisco office of U.S. Department of Health, Education, and Welfare, which pressured the Carter administration to finally execute protections for disabled people, eventually leading to passage of the American with Disabilities Act ("since we'd been left out of the Civil Rights Act of 1964, we needed our own Civil Rights Act"). Thoughtful and illuminating, this inspiring story is a must-read for activists and civil rights supporters. (Feb.)

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Review by Library Journal Review

Heumann shares her story as a lifelong disability rights advocate, from her mother's fight for her daughter's right to get an education to Heumann's time in the White House as the first Special Advisor for International Disability Rights. In this memoir, she shares her frustrations at a world that was not built with everyone in mind, a world that frequently sought to exclude her and others like her from active participation in society. Instead of stewing in frustration, Heumann embarked on a lifelong journey to dismantle the ableist society and create a more accessible world. Heumann's personality shines throughout. Her voice is witty, persistent, and at times irreverent as she immerses readers in her story and highlights how similar we all are. Her tale is one of perseverance against discrimination, and the right of all people to pursue a full and fulfilling life. VERDICT Ideal for readers interested in the history of the disability rights movement and the impact of personal activism.--Ahliah Bratzler, Indianapolis P.L.

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Review by Kirkus Book Review

A driving force in the passage of the Americans With Disabilities Act looks back on a long career of activism."An Occupation Army of Cripples Has Taken Over the San Francisco Federal Building." So shouted a newspaper headline in the wake of one particularly vocal protest. According to disability rights activist Heumann, that was fine. "People weren't used to thinking of us as fighterswhen they thought about us at all," she observes. Until the 1980s, disabled people were largely made invisible, with no easy means of access to the systems of transportation, employment, and other goods that the rest of the population often takes for granted. The author, who was paralyzed after a bout of childhood polio, might have been shunted off to an institution, as one doctor recommended, which was the usual practice in 1949. Instead, her parents, orphans of the Holocaust, resisted. The system did not make much allowance for her outside such an institution. At first, she was taught by a teacher who came to her home for two and a half hours a week, then sent to "Health Conservation 21," a New York school system program in which students were expected to remain "until we were twenty-one years old, at which point we were supposed to enter a sheltered workshop." Instead, Heumann distinguished herself academically and got involved in the drafting of legislation that would effectively add disability to the classes of protected citizens under the Civil Rights Act of 1964. To do so, she had to make the case that "discrimination against disabled people existed," something that many people did not wish to acknowledge. Then she had to find allies inside government on top of battling a host of foes, including conservative politicians and businesses "worried about what ADA would cost, in time and money." Heumann prevailed, and following passage of the ADA after years of agitation, she worked for the World Bank and was appointed a representative of the Obama administration to advance civil rights for disabled persons internationally.A welcome account of politics in action, and for the best of causes. Copyright Kirkus Reviews, used with permission.

Copyright (c) Kirkus Reviews, used with permission.

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PROLOGUE I never wished I didn't have a disability. I'm fairly certain my parents didn't either. I never asked them, but if I had, I don't think they would have said that our lives would have been better if I hadn't had a disability. They accepted it and moved forward. That was who they were. That was their way. They deliberately decided not to tell me what the doctor had advised when I recovered from polio and it became clear I was never going to walk again. It wasn't until I was in my thirties that I discovered what he'd suggested."I recommend that you place her in an institution," he said. It wasn't personal. It didn't have anything to do with our fam-ily being German immigrants. Nor was it ill intentioned. I am sure he sincerely believed that the very best thing for these young parents to do would be to have their two-year-old child raised in an institution.In many ways, institutionalization was the status quo in 1949. Parents weren't necessarily even encouraged to visit their insti-tutionalized children. Kids with disabilities were considered a hardship, economically and socially. They brought stigma to the family. People thought that when someone in your family had a disability it was because someone had done something wrong. I don't know how my parents responded to the doctor, because my family didn't talk a lot about things like this. But I am sure my parents would have found the idea of putting me in an insti-tution very disturbing. Both my mother and my father had been made orphans by the Holocaust. As teenagers they'd been sent to the United States. It was the time when Hitler was coming into power, when things were getting bad enough that people worried about the safety of their children but didn't think it was going to get as bad as it did. My father came to live with an uncle in Brooklyn at fourteen, and he was lucky that his three brothers followed very soon after. My mother was an only child and was sent alone to live in Chicago with someone she didn't know at all. The story was that a distant relative came from the States to visit my mother's family in Germany and brought news of the worsen-ing situation. The information convinced my grandparents to send my mother, their one child, away to live with this distant relative. I have often imagined what it must have felt like for my mother. You're twelve years old and one day someone you don't know, someone you've never met before, comes to visit your family and two weeks later you're suddenly gone from Germany forever, living alone in Chicago with unfamiliar people. My mother always thought that her family would be together again. Even during the war, she was working to save money to bring her parents over. Only later did she learn that they'd been killed. IF I'D BEEN born just ten years earlier and become disabled in Germany, it is almost certain that the German doctor would also have advised that I be institutionalized. The difference is that in-stead of growing up being fed by nurses in a small room with white walls and a roommate, I would have been taken to a special clinic, and at that special clinic, I would have been killed.Before Auschwitz and Dachau, there were institutions where disabled children were eliminated. Hitler's pilot project for what would ultimately become mass genocide started with disabled children. Doctors encouraged the parents to hand their young children over to specially designated pediatric clinics, where they were either intentionally starved or given a lethal injection. When the program expanded to include older children, the doctors ex-perimented with gassing.Five thousand children were murdered in these institutions. The Nazis considered people with disabilities a genetic and financial burden on society. Life unworthy of life.So when an authority figure in their new country, a doctor, said to my parents, "We will take your daughter out of your home and raise her," they never would have agreed to it. They came from a country where families got separated, some children sent away, others taken from their families by the authorities and never returned--all as part of a campaign of systematic dehumanization and murder.Their daughter, disabled or not, wasn't going anywhere. MY PARENTS WEREN'T obstinate or antiauthoritarian; they were thinkers. They had learned what happens when hatred and inhu-manity are accepted. Both my father and my mother were brave people who lived by their values. They had personally experi-enced what happens when an entire country chooses not to see something simply because it is not what they wish to see. As a result, they never accepted anything at face value. When some-thing doesn't feel right, they taught us, you must question it--whether it is an instruction from an authority or what a teacher says in class. At the same time, my parents didn't dwell on the past or on things that were done to them.They didn't forget the past, and they definitely learned from it, but Ilse and Werner Heumann moved forward. Especially Ilse. She was an optimist. And a fighter. And so am I. I can't say I was thinking about all these things when we took over the San Francisco Federal Building, or even when I took on the New York City Board of Education. Only now, looking back, can I see how it all came together to turn me into the person I was to become. Excerpted from Being Heumann: An Unrepentant Memoir of a Disability Rights Activist by Judith Heumann, Kristen Joiner All rights reserved by the original copyright owners. Excerpts are provided for display purposes only and may not be reproduced, reprinted or distributed without the written permission of the publisher.

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