Being Heumann

Judith begins her story by reminding the reader that her successes are owed to the many people, ideas, and failures that she encountered along the way. She believes she is not someone who changed the world but a person who saw injustice and spoke up about it.

She starts by describing her childhood. When she was six years old in 1953, Eisenhower was President, World War II was over, and music and Hollywood were becoming the center of many people’s attention. It was also a time of political upheaval, especially for minority groups experiencing segregation, who were finding their voices and standing up for their rights. Judith’s parents took a special interest in these movements, but Judith was only six and did not realize that she, too, experienced a kind of segregated life due to her disability. She notes that she was “one of the nearly forty-three thousand American children affected by the polio epidemic” (4) and, as a result, has quadriplegia.

It was four years before the invention of the electric wheelchair, and Judith spent most of her days pushing herself to her friend Arlene’s house in a manual wheelchair. Judith’s mother was at home with her younger brothers, Joey and Ricky, and her father was working at the butcher shop. Arlene’s house was nearby, but there was a slight incline in the sidewalk that Judith found exceedingly difficult to climb. Judith describes how if she lifted her hand off her wheelchair for a moment, she would roll back down and have to start the process over.

When she made it to Arlene’s door, she could not climb the steps, so she hollered at Arlene to come outside. Moments later, Judith was greeted by Arlene, who wore a checkered dress. Judith remarks that their mothers always had them in dresses. Arlene pushed Judith to their other friend Mary’s house in a matter of moments, and Mary soon joined them. The girls referred to each other’s mother as “Aunt,” and the families were close with each other. The girls went to Judith’s backyard to play dolls under a maple tree. Judith recalls that, as a child, she never considered it strange that she played with all the other children because they always found ways to include her in their games. She remarks that children are excellent problem solvers, largely due to their optimism.

When September came and Judith’s mother took her to kindergarten, the principal refused to let Judith enter, citing her wheelchair as a fire hazard. Judith was not allowed to attend school with her siblings and friends, but Ilse refused to accept this as the final word. A Jewish school told Ilse that Judith could be admitted if she learned Hebrew, and after weeks of daily tutoring, Judith was almost fluent. However, the principal changed his mind upon hearing this. Judith was given a private tutor by the Board of Education in first grade, but she only came two hours a week, and it was not enough. Judith recalls viewing it all as normal, just different. Like her siblings, Judith also attended Hebrew school three days a week, piano lessons, and Brownies. She cites how these places often did not have wheelchair access, and her mother had to improvise. Her father was passionate about the arts and often took the family to plays and dance performances. Judith also spent a great deal of time reading, as did her whole family; they read newspapers, books, and magazines and then discussed their thoughts. These were happy, innocent years for Judith, but this changed when she was eight years old.

On her way to the candy store with Arlene, a boy about their age stopped and asked Judith if she was sick. Suddenly, Judith realized that she was seen as different by the world and expected to stay apart from it. She thought back on conversations and her experiences of exclusion, and it occurred to her that she was different. Somewhere deep down, she had always known this, but now it was forced into the forefront of her consciousness. Thinking back, Judith compares herself to “a butterfly, becoming a caterpillar” (14). Shortly after this, Ilse’s efforts to get Judith into school finally succeeded. After years of rallying other parents of children with polio, speaking with the Board of Education, and learning as much as she could, Ilse got Judith signed up for a program that helped children with disabilities integrate into the public school system.

On her first day of school, Judith was beside herself with excitement. She rushed through breakfast, meticulously picked out her clothes, and arrived at the bus pickup spot just as it pulled up. The moment is so vivid in Judith’s memory that she recalls the sky being “streaked with pink and orange” (17) as she was lifted into the bus. Judith was thrilled to see a bus made specifically for people with wheelchairs, and the assistant, Lois, was friendly and approachable. The bus picked up several other children, some in wheelchairs, and then arrived at the large, brick school.

Judith‘s teacher, Mrs. Parker, was friendly as well, and Judith noticed that the students in her class varied widely in age, all the way up to 21. Judith‘s desk mate, Shelley, had also had polio and used a wheelchair. Judith made new friends and became comfortable in her class. She even started helping some of the children eat and learn to read. Judith’s class was called “Health Conservation 21” (21), and their room was in the basement, apart from the other children. She noticed that she and her classmates were not expected to succeed or progress and were even forced to rest after lunch. Unlike other children, Judith and her classmates were also not required to attend school and were expected to see it as a privilege. They often felt “dismissed, categorized as unteachable, and extraneous to society” (22). Together, they supported one another, encouraged each other’s strengths, and came to realize that they had much to offer the world despite its low expectations of them.

Judith bonded with Frieda, whose parents were also Holocaust survivors. Frieda taught Judith to be unashamed of her disability. Parental expectations of children with disabilities were shifting, and Judith‘s parents, along with many others, had goals for their children. Around this time, Judith also started attending a summer camp for children with disabilities and further built community with others who understood her. At camp, Judith felt free from the way society viewed her, the burden she felt she placed on others, and her parents’ control. At camp, the counselors were paid to take care of the campers, so Judith did not feel like a burden to them. She reasoned that the entire world could be this way if it were designed to be more inclusive of people with disabilities.

Judith’s mother continued fighting for the rights of children with disabilities. She convinced the board to initiate a new program that integrated these children into regular schools with hired support and added wheelchair ramps to make the school accessible. Judith was one of the first to attend a regular high school, and she found it difficult to open up in the new environment. For years, she was surrounded by other children with disabilities, and the masses of students running past her were overwhelming. She felt shy for the first time in her life and experienced a lack of confidence that she was not used to. Judith also noticed that boys took virtually no interest in her, seeing her as a “nonentity.” She found solace in the friendships she made with the other children with disabilities. When she got the impression that she was not expected to get married, she focused on school instead and was one of the only girls in her grade who planned to go to college and support herself.

At her award ceremony after graduation, her father pushed her in, and she noticed there was no wheelchair ramp up to the stage. The principal said that Judith could just sit in the front row instead, and when her father argued, it became clear that the principal was embarrassed of Judith. Her father persisted, insisting that she be brought on stage to receive her award, and the principal finally conceded. Judith was deeply embarrassed and just wanted to go home, but Werner insisted that she deserved to be there. She awkwardly accepted her award from the principal.

Judith’s next step was attending Long Island University, which was paid for by the US Office of Vocational Rehabilitation, or “Rehab” (36). Rehab had narrow views of what careers were obtainable for people with disabilities, so Judith majored in speech therapy in the hopes of becoming a teacher through an unconventional route. She minored in education and, with the support of the American Civil Liberties Union (ACLU), began her degree.

The school had no wheelchair access to its entrance or bathrooms, so Judith had to rely on friends or strangers to assist her. She found this humiliating because, to her, it implied that she was incapable of something. Judith also did not date the entire time she attended university because she felt ostracized and unable to connect with most of her peers on a deeper level. She wanted to be seen as normal and be fully accepted by “the nondisabled world” (41) but did not know how to break through. Judith notes that being excluded socially and systematically is a lifelong traumatizing experience, but she never accepts that this is the way her life is supposed to be. Instead, she and others like her started to shift the narrative on what it means to have a disability and how excluding people with disabilities is a societal issue rather than an issue with her or anyone like her. Since anyone can have or develop a disability, society should be built to accommodate disability.

While in college, Judith had two surgeries to help reduce further spinal curvature and was in a full-body cast in a hospital bed at her parents’ house. From there, she ran for student council and won with the help of her friends. The Vietnam War was at its height, and political activism was rising all across America. Judith was on the phone with student council or her friends constantly and took all of her course lectures by phone. She finally started to feel like she belonged, and she started a tutoring business with her friend Tony to gain teaching experience.

When it came time to get her teaching license, Judith had to take a medical exam to prove she was healthy enough to teach. The doctor bombarded her with inappropriate and overly personal questions designed to prove she was incapable of teaching. When Judith explained she could not walk, the doctor ignored her and insisted that she come back with her crutches and braces and walk. Judith came back with a support person instead, but the doctor insisted that she come into the exam alone. Ironically, the doctor invited two others without Judith’s permission. The three doctors interrogated and embarrassed Judith and determined she was insubordinate for deciding against bringing her crutches. Judith soon received a letter determining her unfit to teach, and she was irate at being seen as an object of disease rather than a perfectly qualified teacher.

Judith knew that this discrimination could be a way to raise awareness and bring systemic change, but she also feared failing at teaching should her campaign succeed. She worried that if she failed, people would view all those with disabilities as incapable of teaching. When she called the ACLU about what happened, they told her it was not discrimination because it was due to medical reasons. Judith knew that disabilities are a fact of life, either from birth, a disease, an accident, or the simple process of aging, and that it was a human rights violation to deny people with disabilities the right to work, prevent them from moving about freely, or subject them to other overtly exclusionary issues.

Judith called one of her friends who was a journalist, and he published an article about her story. Soon after, The New York Times published a similar article, and Judith got a call from Roy Lucas, a prominent American lawyer who worked on civil rights cases, including Roe v. Wade. He agreed to represent Judith in her case against the Board of Education. More and more articles were published, and Judith appeared on the Today show. As media attention continued, Judith found herself growing more confident and vocal. People stopped her on the street to share their stories of discrimination.

During the lawsuit, the Board of Education claimed that their concern was safety, especially during a fire. Judith notes that safety is a commonly used excuse when people do not wish to act. On the bench sat the first Black woman to become a federal judge, Constance Baker Motley, and she took a special interest in Judith’s case. Judith regards having this particular judge as serendipitous and largely why it was successful.

Judith was allowed to take another medical exam, which was quick and easy, and the Board of Education decided to settle and grant her a teaching license. At first, she was unable to find a job, but her old high school offered her a position. She taught the Health Conservation 21 class, as well as a regular class. Looking back, Judith wonders what would have happened if she had stayed quiet, given in to fear, and given up. Soon after her case was settled, the State of New York passed a law to prevent discrimination against people with disabilities from teaching. Judith and some of her friends started an organization “run by and for disabled people” (63), which they called “Disabled in Action” (63). They fought for all sorts of disability issues, from transportation access to deinstitutionalization. Judith remarks that fighting for one’s rights requires three main ingredients: belief in oneself, knowledge of one’s rights, and people to fight alongside.

In 1972, Judith was in her apartment in Brooklyn wading through pages of policy. The Rehabilitation Act was proposed to assist people with disabilities in gaining an education and finding work. She read the following words in Section 504 and was taken aback:

No otherwise qualified handicapped individual in the United States […] shall, solely for the reason of his handicap, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance (66).

Judith was amazed and relieved to see that people were finally recognizing the discrimination she and others faced and were willing to do something about it. She recognized that the bill was not a perfect solution but a major step in the right direction.

Judith’s activism group, Disabled in Action (DIA), had around 80 members by this point, and they paid close attention to the bill along with their usual activities addressing poor media representation and increasing accessibility. The bill was passed but vetoed by Nixon, and Judith and others organized several protests, all of which garnered little or no media attention. Still, they pressed forward, doing what they could to improve the quality of life for people with disabilities.

Two years later, Judith got a call from a man named Ed Roberts, who was the director of the Center for Independent Living in Berkeley, California. The first of its kind, the center helped mobilize people with disabilities to live independently, find personal assistance, access support and programs, and more. Ed invited Judith to move to California and study for her master’s degree in public health, citing an admiration for her efforts with DIA in New York. Judith was afraid of the thought of moving across the country and leaving her entire support system behind at first, but when Ed explained that she could access everything needed to live on her own, Judith said she would think about it. She ultimately applied, was accepted, and decided to move to California with her friend Nancy.

Judith and Nancy were welcomed by Ed and some other staff, who helped them get settled and access the resources they needed to find housing and personal assistance. Judith hired two staff to help her, which gave her the freedom to live by her own schedule. She joined the board of directors at the Center for Independent Living, which was in her apartment building, and she built a social web bigger than she could ever have imagined. One of her professors invited her to join the board for the Over 60s Health Clinic, and she worked with a student group as well. Reflecting on this, Judith drives home the idea that disability can happen to anyone and insists that society should be built to accommodate the natural aging process, which often leads to disability.

A year after moving to Berkeley, Judith was offered another job in Washington, DC, working for Senator Williams on disability issues. She accepted and moved again. In DC, she had less access to support and resources, and her life became restricted again. However, she was able to work on the Rehabilitation Act, Section 504. She also got to work on education policies for children with disabilities, a passionate subject for her. She helped create the “Education for All Handicapped Children’s Act legislation that would eventually become the Individuals with Disabilities Education Act (known as IDEA)” (75). This law aimed to close down “special-education” schools and integrate children into regular schools, raise expectations and quality of education, and ensure accessibility. Judith also cofounded the American Coalition of Citizens with Disabilities to ensure that Section 504 represented the needs of people with disabilities.

On her way home from New York after the winter holidays, Judith was stopped at the flight gate. The attendant told her she could not board without someone to assist her, and Judith insisted that this was illegal and demanded to see a supervisor. They allowed her on board but soon came back to her seat and told her she needed to leave. When Judith refused, security escorted her off the plane. When they found out she worked for the Senate, they let her go, but Judith used the experience to garner media attention. She also sued the airline, and although the judge virtually dismissed her case, she settled out of court.

Over a year later, Judith received a call from Ed offering her his director position as he was going to go work for the state. Her time in DC gave her a great deal of experience, and she happily moved back to Berkeley. At the same time, she and others across the country awaited the finalization of Section 504 regulations, which were delayed as universities, hospitals, and other institutions pushed back against it. As Judith reflects, “[T]he institutions didn’t see the need for spending resources to adapt their buildings, programs, or classrooms for disabled people” (80). By mid-1977, the bill was still unsigned.