Being Heumann

Judith’s memoir takes place over the course over 70 years, beginning in 1947 when she was born. It is set against a backdrop of political upheaval and activism concerning disability rights in the United States and focuses on how Judith contributed to the advancement of these civil rights (The Effects of Discrimination and the Long Road to Equality). Judith fully understands the influence of history on her life and makes this clear from the prologue when she discusses her parents’ need to flee Germany as Hitler rose to power. She reflects on how, if she had been born in Germany in 1947 rather than in Brooklyn, she would likely have been a victim of the Holocaust, which began with the removal of children with disabilities from their homes to be killed. Hitler deeming people with disabilities as deserving death is an extreme example, but ableist violence is part of reality and Judith’s personal history specifically. This history sets the foundation for Judith’s activism and drive to change what she sees as wrong in the world.

From 1948 to 1955, before a vaccine was created, a polio epidemic swept across America, affecting approximately 45,000 people, over 3,000 of whom died. As Holocaust survivors, Judith’s parents were skeptical of institutions, so when she contracted polio and a doctor recommended she be placed in a hospital, her parents refused without question. Notably, the United States has its own history of eugenics regarding people with disabilities. For example, the Supreme Court case Buck v. Bell (1927) held that compulsory sterilization of “unfit” people, including people with intellectual disabilities, was constitutional. These policies affected people in institutions particular.

This began Judith’s unconventional existence as someone who was never taught to feel shame for her disability—a rarity in Judith’s time. As Judith narrates her childhood and time in university, she tracks the timeline of major political events that changed the course of disability rights activism in the United States. She charts the Civil Rights Movement of the 1950s and 1960s, which failed to address people with disabilities but nonetheless inspired her, and many Civil Rights activists supported her when the time came. She also reflects on the Vietnam War and how countless soldiers returned home with mental and physical disabilities. Many of these men were neglected and ignored by their own government and left to deal with their new disabilities on their own.

In the 1970s, the Rehabilitation Act was introduced, which included Section 504 addressing discrimination and lack of accommodations for people with disabilities in the private sector. It was a major step forward, but Joseph Califano, head of Health, Education, and Welfare (HEW), refused to sign it. This caused a 24-da-long protest and occupation which Judith co-led with Kitty Cone. Judith describes the event with a mixture of frustration and optimism, as it was a harrowing but deeply meaningful and life-altering experience for her and the others in attendance.

The next major piece of legislation was the Americans with Disabilities Act (ADA), which took almost a decade to be approved. The ADA expanded the Rehabilitation Act’s protections by including private institutions under its purview and providing a limited, two-year window in which to implement changes. When Congress delayed its passing, disability activists engaged in one of the movement’s most famous protests, the Capitol Crawl, in which 60 activists set aside their mobility aids and scaled the Capitol steps however they could, most on their hands and knees. The bill passed shortly thereafter, and the ADA serves as model disability legislation for other countries. In addition to the ADA, the Affordable Care Act (2010) prevents insurance providers from refusing coverage based on preexisting medical conditions. This expanded access to care for many people with disabilities.

In the conclusion of Judith’s memoir, she reflects on the present and recent events, and notes how liberties and progress can be reversed or removed at any time. She cites Donald Trump repealing and reducing various policies designed to support people with disabilities and how easy it is for justice to be revoked. In 2017, 60 ADAPT activists staged a die-in at Senate Majority Leader Mitch McConnell’s office to protest cuts to the Affordable Care Act, 43 of whom were arrested. Existing legislation is also imperfect, and many people with disabilities find themselves forced to choose between working or collecting disability benefits. Likewise, many cannot get married because “marriage penalties” affect their benefits (“What Happens When Persons Living with Disabilities Marry?” SNA.org, June 2010).

Throughout her memoir, Judith repeats the idea that none of her achievements would have been possible alone, citing The Power of Unity in Effecting Change. Additionally, Judith asserts that a brighter future is possible if people accept their individual responsibility in effecting change, work together, and remain optimistic.