Being Heumann

Judith attended a leadership retreat for people with disabilities, hosting workshops for a friend in Eugene, Oregon. It was a beautiful evening in August, and she saw a man in a wheelchair with broad shoulders whom she found cute. A year before, Judith’s father had died of cancer, but not before advising her to think about the type of man she wanted to commit to. The man she saw was named Jorge, and he was attentive and kind. Judith learned more about Jorge the next day and invited him to a restaurant with her group. They spent the night together in Judith’s friend’s guest house, and Jorge then flew with Judith back to Berkeley for a couple of weeks. They married in May 1992.

Judith got an offer to work for the Clinton administration. She was torn between the happy life she built and the chance to work on the front lines of politics. She said she would only accept if she could work with the “Office of Special Education and Rehabilitative Services in the Department of Education” (175). OSERS was created in 1990 when the education department of HEW became its own entity, and it was pivotal in providing grants for research for WID. The interview went well and Judith was offered the job, but she worried whether she would be respected as a woman with disabilities. She also worried about leaving her support system and life in Berkeley and about the lack of accessibility and personal assistants in DC. When she voiced her fears to Jorge, he reminded her she was a “chingona…The most badass girls in the world” (177). Judith took the position.

Before being appointed, Judith flew to DC regularly to get acquainted with the position and figure out the logistics of living there. She decided that two in-home personal assistants would be needed, and she found a three-bedroom apartment to accommodate them. After a no-show, she found two assistants who agreed to move in, and Jorge found work after a grueling process of denials.

When Judith finally began working for OSERS, her first move was to ensure that people with disabilities could speak up about their needs and the issues they faced. She hired a man named Howard Moses, who had cerebral palsy, to be her deputy. They each hired who they believed to be the best person for each role in the department, many of whom had disabilities. This led to a new issue when Judith realized that the office could not accommodate their workers, so they hired more interpreters and assigned assistants to those who needed them.

OSERS also worked to implement bills and laws passed by Congress and monitored spending. They created means for everyday citizens to have a say in how these funds were spent. Their main goals were equality for children in schools and people in employment. Judith served in this position for over seven years, and she believes that her time there made an impact, particularly on those working within OSERS and how they view their ability to achieve success.

After working for the Clinton administration, Judith was offered a position as the first-ever Adviser on Disability and Development for the World Bank. She took several trips to India. On the first trip, she met a group of disability activists, who tell the story of a toddler whose grandmother wanted to starve to death because he was born without arms. They took the case to the police, and the boy was growing up strong. Judith noted how many people in India crawled to get from place to place, as they were not provided with wheelchairs and were shunned by society. Many of them were begging as well, and some were children who were given disabilities on purpose to earn money for a crime group.

Judith explains that people with disabilities remain vulnerable their entire lives. For example, they are far more likely to experience sexual assault. She regrets the invisibility that people with disabilities continue to experience around the world but feels empowered when she sees how some small villages in India combat stigma by supporting each other. In one similar trip to Uganda, a small boy was terrified of Judith’s electric wheelchair, which she describes as “a testament to the lack of support for disability and independence” (188). Judith also describes the implicit bias that she encounters around the world regarding disabilities, from regular people and politicians alike. People with disabilities are not included in discussions and are seen as less-than or invisible.

People with disabilities are also more likely to experience bullying, and Judith recounts one such experience. One of her superiors at the World Bank, a man with no disabilities, would constantly criticize her work. He did this to other women as well and may have been sexist. Judith regrets how she cowered when this occurred. She blames a lack of experience with people without disabilities, especially men, and how she never learned to navigate that world before.

Fast-forwarding to the Obama administration, Judith was offered a brand-new position working for the State Department, which had just overseen the UN’s creation of the United Nations Convention on the Rights for People with Disabilities (CRPD). It worked to ensure that people with disabilities around the world were seen, heard, accommodated, and included, and demanded “full equality under the law” (191). It was June of 2010, and Judith was 63. She started traveling to countries in the Middle East to learn about the issues there and how to improve the lives of people with disabilities in these nations. They determined ways to increase accessibility and inclusivity.

Judith believes that “lack of exposure and lack of knowledge” (194) are the two biggest issues that she faces when trying to achieve equality for people with disabilities. She finds that many people are unaware of disability rights as a civil rights movement and cites the fact that the ADA was passed without as much public acknowledgment as would usually be the case. There are common assumptions that people with disabilities do not benefit from the same education or work, or that they cannot perform as well. She insists that disability is an inevitable part of human life and that society should be built to accommodate and accept it.

A program called the Mandela Fellows at the State Department nominates young African youth to come to the United States for six weeks to learn about human rights activism and issues. Judith encourages them to nominate some youth with disabilities, and one was selected who immediately complained about how he would get around. Judith identifies this as a common pattern and blames societal structures. In her time in the State Department, 65 youths with disabilities were nominated as Mandela Fellows. Disability organizations were also added to the list of places where these nominees could attend their placements.

After the UN introduced the CRPD, the United States worked on the implementation. John Kerry was elected Secretary of State in 2013 and took a special interest, and people with disabilities across the country worked together to put words into action. Ultimately, the treaty was declined by the United States.

Since the passing of the ADA, wheelchair ramps, accessible transportation, and inclusion in employment and education permeated the nation. The ADA was amended and resolidified in 2008 by Congress and President George W. Bush. Later, President Obama worked to protect the ADA and hired many people with disabilities to work in the White House. He also demanded that 100,000 people with disabilities be hired in the United States. Furthermore, the Affordable Care Act provided people with disabilities the ability to get health insurance and expanded the reach of Medicaid for people with disabilities.

Judith reflects on the representation of people with disabilities in Hollywood, citing examples like Star Wars and Million Dollar Baby as prime examples of the recurring trope of depicting disability “as a burden, a tragedy” (201). She challenges the reader to consider what it might be like if a story was told in which a person with a disability never wished to be anything else, like her memoir, or did not see the barriers in society as insurmountable. She feels that having a disability has presented her with unique opportunities and a community she never would have had otherwise, and it pushed her to work harder than others. Furthermore, having a disability inspired Judith to effect lasting change in the world. She insists that acquiring or being born with a disability does not have to be tragic and is just another way of being human.

When Donald Trump was elected President in January 2017, Judith wondered how America could have made this choice. The largest Women’s March in history soon followed in response. Trump reduced the Affordable Care Act’s reach and openly mocked a reporter with a disability during a speech. Information about the ADA and IDEA was stripped from the White House website. Judith stresses that although disability rights have come a long way, it is all too easy for them to be set back again. They should not be taken for granted or assumed to be ever-present, and the fight will always continue. Protests in response to Trump’s actions took place across the country. IDEA continues to be attacked, blaming children with disabilities for teachers’ failures to uphold their responsibilities and holding other children back.

In the present, people with disabilities continue to face double unemployment rates, lack of financial assistance, and social stigma. Judith stresses the need to ask what we want for society and our future and whether people want a world that is loving, accepting, and accommodating. She points to optimism as a source for change and notes that people’s fundamental beliefs about disabilities and equality still have a long way to go. Judith feels that democracy is the key to this future, as it allows people to collaborate and compromise. Judith also cites the importance of acting rather than simply feeling angry, and she believes that “every single person [has] a role in producing the change” (210). She ends her memoir by stating that segregation weakens the whole of society and reminds the reader that every person is responsible for creating a community of “love, equity, and justice” (211).