How ‘Disability Visibility’ Empowered Me to Change My Narrative

The book 'Disability Visibility' on a blue fabric, with a plant pot in the upper right corner.

(TW: This piece mentions ableism throughout)

Disabled.

It’s not a bad word. But the negative images it conjures have always made me shudder. Growing up South Asian and able-bodied, I was conditioned to view those with disabilities as inferior. And not just inferior, but cursed, or to blame in some way for their fate. I lived in an ignorant haze of privilege.

Unbeknownst to me, I’d one day become one of the 61 million disabled Americans. In 2018, at 24, my health took a turn. A series of unexpected diagnoses were added to my previously blank medical record in the next two and a half years. I’d always thought I was in the driver’s seat of my life trajectory. But I begrudgingly handed over the keys to my chronic pain conditions, as well as a yet-to-be-understood GI issue. A couple of family friends suggested that I apply for disability benefits, as I’d had to leave my job, which was too physically demanding. But I scoffed, berating them in my mind for associating me with that word.

I lived in denial. Accepting my disability, to me, meant admitting weakness, admitting a lack of worth. The fear of what others would think of me if I came out as disabled prevented me from adapting to my new identity.

Disability Visibility: First-Person Stories from the Twenty-First Century challenged the faulty thoughts I clung to for so long. This collection of personal essays validates the struggles that an intersectional array of disabled, neurodivergent, chronically ill, and deafblind individuals encounter on a daily basis.

The book opens with a piece from the late lawyer Harriet McBryde Johnson. She recalls her experience debating Princeton Professor Peter Singer, who believes that the law should allow for the killing of those with cognitive impairments, at any age. What she found most difficult to grapple with was the level of respect he showed toward her, despite his deep-seated prejudice. Her exchanges with him led her to examine her own moral values. I clung to each word of her passion-filled piece with wide eyes and boiling rage. How could this highly educated and respected man be so inhumane?

McBryde tries to see things from his perspective, with no minor amount of anger of her own. Singer’s view is hardly unique. He sees disabled folx — particularly those lacking a certain level of consciousness — as deemed to a life of misery and suffering. But McBryde remains firm in her conviction that disabled lives aren’t devoid of joy and value. Her piece raises an important ethical question. It also highlights the role that she played as a lawyer in speaking out against selective infanticide and similar ableist practices.

As I read on further, I realized just how warped my view of disability was. A common thread of frustration, over constantly being subjected to biases — both explicit and implicit — was present in each essay. And the nuances of disability were laid forth. Diana Cejas recounted her experience of recovering from cancer and a stroke while training to be a physician herself. Haben Girma, the first deafblind graduate of Harvard Law, shared her account of becoming in tune with her guide dogs when wandering across the world. Jamison Hill candidly opened up about his Lyme Disease, which leaves him bedbound and unable to speak. Despite his struggles, he finds love.

Someone had also mentioned a poor representation of disabled folx in the media. This made me more cognizant of the messages we are given in movies and books. Disabled characters are always portrayed as needing rescuing or pitying. Often, they’re merely background players in the main characters’ lives. Even more so, they aren’t included in mainstream books and media at all.

The essayists, though differing in their backgrounds and calls to action, shared a common thread. Society has cast a thick veil between disabled individuals and the rest of the world. Ableism perpetuates our physical and emotional struggles, invalidates our concerns, and often, our very existence. Whether it’s through infantilization, inspiration porn, or the denial of accessibility, the message is this: “You don’t deserve to live the same way we do. Your life is inherently less.”

This book left me with a large sense of cognitive dissonance. The internalized ableism within me felt attacked. All of a sudden, I had compelling reasons to shed it. Disability didn’t mean being a burden or being incapable of living a full and meaningful life. Disability wasn’t a bad word. In fact, it was comprised of these strong and change-making voices.

Each of the contributors hailed from a diverse range of backgrounds — from astronomy to law to fashion design to dance. There’s a space for disabled folx in every niche and professional sphere when society makes room for them.

Next month is Disability Pride Month. Though the term “pride” may be too all-encompassing (many individuals may just as well not feel proud of their disabilities), it is still important to recognize. Figures from the World Health Organization indicate that 1 billion — or 15% of the global population — individuals live with some type of disability. And this number is only expected to increase.

Chances are that we all know at least one person with a disability, whether it’s ourselves or a loved one. And realistically, the majority of us will experience disability throughout our lifetimes. That’s why it’s so important to make accessibility a priority, not only in physical spaces but in the virtual domain. Educators, mental health specialists, medical personnel, and others who spend time working with disabled folx should receive proper training on how to be more inclusive.

Disability Visibility cast a much-needed spotlight on disabled folx. These thirty-seven individuals shared their realities, unfiltered and unapologetic, on living in an ableist world.

This book helped me to accept disability as a part of life and the human experience. I felt less alone, less victimized, by my experience. Ultimately, without challenging my own biases, I’m only perpetuating the unjust messages of ableism, both internally and systemically.

I want to be a better advocate — both for myself and for disability as a whole. And without validating my own experiences, I can’t expect anyone else to do so. Here’s to embracing my own narrative, and to choosing the path of change.


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Published by Brina Patel

Freelance writer, bookworm, travel lover, spoonie. (she/her) Using words to change the world. Let's connect on Instagram: @brinapatelwriter

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