Being Heumann

Being Heumann is a memoir written by Judith Heumann that was first published in 2020. Judith Heumann contracted polio at age two and has been a lifelong political activist. She is the cofounder of several non-governmental organizations related to disability rights and has also worked with the United States government under several administrations. Her memoir’s title refers both to her name and the book’s main idea, which is the importance of equality and human rights for people with disabilities.

This guide utilizes the 2020 Beacon Press edition of the memoir.

Plot Summary

Judith Heumann’s memoir begins with a recollection of her family’s history. Her parents, Ilse and Werner Heumann, immigrated from Germany in the 1930s to avoid the escalating political issues in the country. Hitler’s campaign of mass genocide began with an attack on children with disabilities, who were taken from their families and killed. At 18 months old, a doctor determined that Judith would never walk due to a polio infection, and he suggested that she be placed in a hospital, as was common at the time. Her parents’ refusal was a result of their experiences, and Judith describes her parents as courageous people with integrity, who taught her to question what seems wrong.

In 1953, Judith is six, and her world revolves around her friends, Arlene and Mary. Although slight inclines and curbs are significant challenges for Judith, she plays and does not consider her disability limiting. Instead, she and her friends adapt their games to make sure Judith can play. This optimistic attitude toward setbacks is what Judith admires about children. When September arrives, Judith is excluded from school. One day, a boy asks Judith if she is sick, and she suddenly realizes the world views her as different. She shuts down and finds it difficult to enjoy her usual activities. When a program called “Health Conservation 21” accepts Judith, she goes to school for the first time at age nine. Although the class does little to further Judith’s education, it provides a sense of community, support, and mutual understanding. Judith also starts attending a summer camp for children with disabilities, and she finds independence and freedom from the way society views her as a burden. Judith and a few other children with disabilities are placed in a mainstream high school with hired support and wheelchair access. Judith earns an award for academic achievement. At the ceremony, the principal insists Judith sit on the ground floor, but Werner pushes back until Judith is allowed on stage. She accepts her award and moves on to Long Island University. While there, Judith undergoes a spinal fusion and is in a body cast for months. Despite this, she runs for student council and wins and works on the council by phone.

Judith wants to be a teacher, and she must undergo a standard medical exam to graduate. The doctor asks her deeply personal questions and humiliates her, insisting she come back with crutches and show she can walk. Judith comes back in her wheelchair, and she is accosted by three doctors and called insubordinate. Judith is denied her teaching license and recognizes how much she is seen as her disability. The Vietnam War causes political upheaval, and Judith and her peers realize that society that is the problem, not them. Since anyone can have a disability, society should accommodate this reality. They decide to bring publicity to Judith’s story, drawing the attention of media outlets and a renowned lawyer, Roy Lucas. Lucas represents Judith in her suit against the Board of Education, and Constance Baker Motley, America’s first Black female federal judge, oversees the case. Judith wins and is granted another exam and her teaching license. She accepts a position at her old high school, teaching both children with disabilities and children without disabilities. Judith helps organize a group called Disabled in Action and begins fighting for the rights of people with disabilities.

In 1972, the Rehabilitation Act, Section 504 is proposed to prevent discrimination against people with disabilities in work, education, and housing, but the bill has still not passed five years later. Judith pursues her master’s degree at the University of California, Berkeley, and works for the Center for Independent Living (CIL). She then works for Senator Williams in DC before moving back to Berkeley to take a directorial position at CIL. Judith gains independence, social connections, knowledge, and experience during these formative years. At one point, she is arrested and taken off a plane when she refuses to leave after the attendants insist she cannot fly alone.

Part 2 begins with Judith preparing for a rally demanding the signing of Section 504 of the Rehabilitation Act. Joseph Califano’s proposed amendments would exempt many institutions and exclude people with substance use disorders. She ends up participating in a 24-day-long protest occupying the Federal Building in San Francisco. On the first day, Judith and others speak about their experiences of discrimination and oppression. The protestors stay overnight, and their numbers only grow. Hundreds join outside, returning each day to show support. They gain press coverage, and solidarity protests erupt in cities across the country.

Califano ignores the protests and attempts to starve them out. They receive empty assurances but are unsatisfied. A week passes, and the protestors settle into a routine. A congressional hearing is held, but Califano continues to ignore them. Thirty-four people including Judith fly to DC. They hold vigils outside Califano’s house and the White House and gain significant support. Califano attempts to hide but is found in an elevator by a reporter and confronted with questions about Section 504. The embarrassment and exhaustion lead him to sign the unamended bill on April 28, 1977.

Judith and the CIL create programs and strategies to implement the policies laid out in the bill. The CIL forms the Disability Rights Education and Defense Fund (DREDF), run by people with disabilities. Judith travels and learns how other countries handle disability rights and cofounds the World Institute on Disability (WID), but she is soon demoted due to sexist discrimination. The WID helps draft the Americans with Disabilities Act (ADA), and in April 1988, the first draft is presented to Congress. It fails to pass, but a joint hearing attended by 700 people inspires two congressmen to prioritize disability rights. In May of 1989, another version of the ADA is introduced that demands everything be made accessible within two years. The House of Representatives delays the bill, which causes a protest in which over 60 people with disabilities climb the Capitol Hill steps. On July 26, 1989, the ADA is finally signed into law by President George H. W. Bush.

Judith meets and marries Jorge in 1992 and takes a job with the Clinton administration in the “Office of Special Education and Rehabilitative Services in the Department of Education” (175). After seven years, Judith becomes the first Adviser on Disability and Development for the World Bank. During the Obama administration, Judith works for the State Department, which helps the UN create the United Nations Convention on the Rights for People with Disabilities (CRPD). Obama’s Affordable Care Act provides people with disabilities health insurance and expands Medicaid. Although disability rights have come a long way, it is all too easy for them to be set back again, which becomes clear when Donald Trump is elected President. In her conclusion, Judith reminds the reader that disabilities do not have to be tragic, that they can happen to anyone, and that society should be built to be accommodating. She has never wished to not have a disability; she feels that her disability has provided her with incredible opportunities and allowed her to meet amazing people. It pushed her to strive for more, fight for equality, and persevere. Judith believes optimism and democracy are key and that every individual has a part to play in change.