Alaina Leary

The prologue to Being Heumann: An Unrepentant Memoir of a Disability Rights Activist by Judith Heumann with Kristen Joiner starts with the words, “I never wished I didn’t have a disability.”

It’s a powerful way to begin a memoir, one that I can appreciate probably has a different impact on nondisabled readers than it did on me. This might be the first time nondisabled readers have come across that sentiment, as Heumann points out in Chapter 12, aptly titled “Our Story.” Heumann connects popular contemporary media portrayals of disability, such as Me Before You and Million Dollar Baby, to her own story. “What if someone’s story began with the words: ‘I never wished I didn’t have a disability,’” she writes, bringing the book full circle back to its opening line.

Heumann’s memoir, which is in equal parts a history lesson on disability rights activism in the United States and an intimate look at her life from childhood to present, centers on ideas of disability rights, community, access and equity, independence, autonomy, and disability pride.

From the very beginning chapters, I was hooked. Unlike Heumann, I was born with my disabilities (primarily autism and Ehlers-Danlos syndrome) and I am not a wheelchair user, but many of her childhood experiences mirrored mine. “The first time I’d ever met another disabled kid was when I went for the evaluation,” she writes in an early chapter about the access barriers she faced while trying to get a primary school education. The writing is concise and evocative and she draws the reader into every scene. I felt like I was right there with young Judy, rolling to her friend Arlene’s home, yelling for her to come out and play because there was no accessible entrance.

It’s a challenge to write a book that centers so strongly on disability rights without pandering to a nondisabled audience, but Heumann clearly trusts that all her readers will get it. Heumann has faced many people throughout the years who don’t know they’re being ableist—telling her that she can’t attend public school because her wheelchair is a fire hazard or not granting her a teaching license because her wheelchair is unsafe for young kids. But she knows that the best way to win people over, including her readers, is to be honest with them and give them the opportunity to empathize with her instead of distancing themselves from the disabled experience.

Heumann’s writing does not hold back. She is unafraid to share the most difficult moments with us, such as when other children insisted that she must be sick because she used a wheelchair or when she felt like a burden simply for asking for equal access. “I recognize now that exclusion, especially at the level and frequency at which I experienced it, is traumatic,” she writes, and she continues to show us what this looks and feels like throughout the memoir. It’s traumatic to be asked to leave an airplane because you have a disability, or to be unable to attend the same social activities as your fellow college students.

Heumann contrasts this with the pure joy and collective access of being part of the disability community. She experienced this at a camp for kids with disabilities and in her special education classroom, and she experienced it as an adult disability activist in her work with organizations like Disabled In Action, the Center for Independent Living, and World Institute on Disability. “We treasured the ability to create our own space, where our communication needs, and their slower pacing, were respected,” she writes about the long meetings she and other protestors had while they were fighting for Section 504 of the Rehabilitation Act of 1973 that prohibits discrimination on the basis of disability. Those meetings, and their work, were designed around collective access: waiting patiently for everyone to speak, making sure people had access to their medications, using American Sign Language and translators.

Collective access is a major theme in Heumann’s memoir, both in her personal life and in her activism. “Institutions don’t like change because change takes time and can entail costs,” she writes, and she also argues that people need to assume it’s possible to figure out accessibility and problem-solve and take action. Heumann comes across many excuses in her activist work for why existing institutions—such as schools, public transportation, and the government—can’t or won’t change. She and her fellow activists don’t take no for an answer. Throughout the book, Heumann takes matters into her own hands; she personally calls event organizers to challenge them when they question why a young disabled person should be invited to attend.

Heumann is truthful about her place in the world as a Jewish disabled woman, and she recounts the erasure she experienced within the larger women’s rights movement, which ignored disability at the time. “What a pervasive influence silence and avoidance have had on my life,” she writes, in a scene where she is connecting her Jewish identity and the silence surrounding the Holocaust to the silence she encounters as a disabled woman.

She’s also thoughtful and honest about both her position of privilege as a white person with access to education and healthcare and the sexism she encounters as a disabled person. She credits other marginalized groups, particularly Black people and the LGBTQ+ community, for showing up for disabled activists when no one else would. But there were several times in Being Heumann that she used the civil rights movement and the Black experience in America with the disabled experience, which I felt almost conflated the two and ignored the existence of disabled people of color. These connections are meant to show readers how ignored disability rights were at the time when Heumann and her fellow activists were fighting for Section 504 and the ADA, but they sometimes miss the mark. Many white disabled people are quick to suggest that they understand what it’s like to experience racism because we experience ableism, but the two experiences are not the same, and our whiteness will always offer us a level of privilege and visibility that disabled people of color are not afforded in this country.

On the whole, many of the disability rights issues raised in Being Heumann are improving. Heumann recounts how a curb was like the “Great Wall of China” when she was a kid; if her friend lived on the other side of the street, it would have been literally impossible for her to get off the curb without curb cuts. Her memoir details some of the ways that disability rights have been won, and the steps backward we’ve taken as well—the passing of the Affordable Care Act, and legislation created to weaken it. I was surprised by just how much of her memoir, and the access barriers she’s faced, feel universal and timeless. “I did sometimes feel a little awkward about getting schlepped up the stairs backwards to Brownies, or getting carried down the back steps and through the garbage behind the synagogue to get to the elevator for Hebrew class,” she writes in an early chapter about her childhood. In 2020, nearly 30 years after the Americans With Disabilities Act passed, I still encounter public spaces where my friends and I have to carry a friend who uses a wheelchair inside up a set of stairs, and even accessible buildings are known for having their wheelchair-accessible entrance in the back by the dumpster.

At 211 pages, this memoir was concise and action-packed. Every chapter focuses on Heumann’s life, but she’s not a passive participant; she’s quite the opposite.

Being Heumann tells the story of Judith Heumann, but Heumann herself writes throughout the book that the work is not hers alone. She credits her family, in particular her mother, for instilling in her the idea that she could fight for her rights. Her memoir offers a lens to the larger disability rights movement, both in the States and globally, and she writes about the many other activists and friends she’s collaborated with over the years.

Heumann’s memoir is ultimately a story of community, of disabled and nondisabled people coming together for collective access. “This is my story, yes, but I was one in a multitude,” Heumann writes. This is her story and it starts with the fact that she never wished she didn’t have a disability. It’s also all of our story; it’s our history, our movement, and our building block for the future. Heumann leaves the reader in the final chapter with actions we can all take to build a more inclusive world and become involved in modern day activism, and the sentiment that “we have the power. We are changing things.”

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In her memoir Haben: The Deafblind Woman Who Conquered Harvard Law, Haben Girma welcomes readers into her world. “I like my deafblind world. It’s comfortable, familiar. It doesn’t feel small or limited,” she writes, and the memoir illustrates that. Girma’s memoir is written in present tense, so readers feel as though we’re experiencing events exactly as she did in the moment, whether it was her volunteer work in Mali or her trip to Alaska or her days at Harvard Law School.

At the heart of Girma’s memoir—which dives into her fear of cooking, her interest in travel and salsa dancing, and her passion for law and public speaking—is the message that the world needs to be more accessible to disabled people.

“Society designed this environment for people who can see and hear. In this environment, I’m disabled. They put the burden on me to step out of my world and reach into theirs,” she writes in an early chapter, and the concept continues throughout the book. Girma faces barriers in college when she pushes for accessible menus at the cafeteria just as she faced them playing games with her friends as a kid.

Girma’s personal stories don’t just encourage access. They go deeper than that; she wants nondisabled people to take responsibility and create collective access together. In an early scene, Girma recounts what it was like as a kid being told that she needed to ask about the homework; “I just feel tolerated,” she writes. She demonstrates collective access through scenes with her friends, Gordon and Liqin, and with classmates and mentors during her Harvard Law School years. 

In these moments, Girma and her community design what access looks like and build it together—typing into a braille computer to communicate at a noisy bar, and advocating for truly accessible menu solutions together. I felt the joy and love in access in these scenes: It’s the same way I have felt when my friends text me in a noisy bar because I can’t hear their voices or when someone sits down with me in solidarity because I’m the only one who needs to rest at a networking event. As she and her friends create collective access and advocate for systemic changes in their communities, Girma also discovers her passion for law and disability advocacy.

Another thread running through Girma’s memoir is the importance of independence and misconceptions about what disabled people can do. Like many, Girma has to challenge her parents to allow her to do things like travel (or even take the bus) and faces classmates, colleagues, and mentors underestimating and looking down on her. Throughout her journey, she’s determined to break down those myths, while never falling into the trope of ‘overcoming’ disability, either. 

She’s honest about how being deafblind impacts her life—writing about exactly how difficult it is to join a conversation when all she can hear are vague mumbles—and also wants society to see her for who she is rather than seeing a collection of ideas about disabled or deafblind people. She also touches on inspiration porn and writes in a chapter about a law networking event, “People with disabilities get called inspiring so often, usually for the most insignificant things, that the word now feels like a euphemism for pity.” Girma is well-acquainted with inspiration porn as someone who made headlines for her graduation from Harvard Law, and she’s not afraid to dispel the idea that she’s inspiring simply for going to law school.

There are a few scenes during the book in which Girma faults herself for the ableism she experiences. “By framing the situation as me-against-them, I perpetuated and guaranteed my own exclusion,” she writes in one scene about communicating with sighted and hearing people as a deafblind person. These moments felt authentic to me as a disabled reader; I too have blamed myself for ableism over the years. Girma wants to be fair and take responsibility for her own decisions, which I respect, but there are a few instances where I thought she was too hard on herself and didn’t recognize that ableism and access barriers aren’t her fault.

At 266 pages, the memoir felt a little short and focused more on Girma’s childhood and teen years than on her experiences at Harvard and beyond. As a reader, there are moments and chapters that I wish were explored in more depth. Girma spends a lot of time on her Eritrean heritage and makes a few references to being black, but I would have loved to learn more about how her race and culture inform who she is and how she connects to the world. I also would have liked to go deeper into her relationships, especially with her parents, to understand their connection outside of their worries about her disability affecting her safety. Most chapters also felt like there was a lesson embedded in the story, excepting the chapter that focused on her family’s heritage, and I would have liked more moments that told the reader about who Girma is without trying to teach us something important about disability or access.

Although Girma doesn’t use the term disabled to refer to herself very often throughout the book, except to say she’s disabled by her circumstances, she does include an appendix at the end of the book titled, “A Brief Guide to Increasing Access for People with Disabilities,” that covers best practices for talking about disability and discourages terms such as special needs and differently abled. There is no explicit discussion about the phrase disabled person versus person with a disability, but Girma typically defaults to the latter.

On the whole, Girma’s memoir is a love letter to the disability community, especially to deafblind people, and it celebrates collective access, disability justice, and education, both formal and informal. “I’m going to create a community of people who believe that disability itself is not a barrier; the biggest barriers are social, physical, and digital,” Girma writes—and that’s exactly what she does, not only in her own community but through her advocacy around the world.

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