 | Being Seen: One Deafblind Woman’s Fight to End Ableism is a rare nonfiction page-turner, full of profound insights and raw honesty on every page. The narrative resonates as a powerful cultural critique, insightful personal memoir, and compelling exploration of the universality of disability. Sjunneson was born with Congenital Rubella Syndrome (her mother contracted measles while pregnant). The result: severe heart issues requiring multiple surgeries, and significant deficits in sight and hearing. We are all potential disability advocates. According to the CDC, nearly 30% of the US population currently has some type of disability. Almost half of Americans aged 75 and older report a disability. |
The author says: “Disability will always exist. To be human is to be vulnerable, and disability is a factor in physical vulnerability. . . . You could miss a stair, you could catch a disease, you could make friends with a metal straw, you could find yourself disabled in a matter of moments.
If we stop looking at these as tragedies, and start looking at them as new ways of being, maybe the power of disability stigma would falter . . .”
If we stop looking at these as tragedies, and start looking at them as new ways of being, maybe the power of disability stigma would falter . . .”
 | One of the most profound lessons of this book was understanding disability as a continuum, rather than a binary, either/or state. For example, “Blindness can manifest differently not just from person to person, from condition to condition, from cause to cause, but from day to day. It can shift based on the kind of light that you’re in . . .” In my household, my low-vision spouse occasionally sees things that I miss, even though I’m fully sighted (but rely on thick corrective lenses in my glasses). |
The author provides many examples of ableist bias in our culture, such as the phrases “turn a blind eye” or “it fell on deaf ears.” She links this prejudice against the differently abled to the Industrial Revolution, which “required all bodies to function in the exact same way—and any divergence marked you as useless. After all, if you can’t work, the capitalist system sees you as a burden rather than a member of society.”
For disabled individuals, this systemic prejudice is understandably painful as well as pervasive. “Much like treating radiation sickness, there isn’t a cure for ableism. You can only decontaminate, limit exposure, and cure the wounds that it causes.”
For disabled individuals, this systemic prejudice is understandably painful as well as pervasive. “Much like treating radiation sickness, there isn’t a cure for ableism. You can only decontaminate, limit exposure, and cure the wounds that it causes.”
 | The author’s experience with medical professionals was one of the most fraught examples of this ableist bias: “The medical profession looks at my body as a problem to be solved, rather than a patient to be treated.” “So often, disabled bodies are not seeking a cure, or a way to be fixed; the people who live in them simply want solutions to help them function in the world.” |
The author notes: “My identity has been formed around the body that I live in—so has yours, by the way, disabled or not—and to [“fix”] it would change me irreversibly.”
 | Our sexist culture makes ableist norms particularly harmful for females with disabilities. “Disabled women especially are told to try and conform to nondisabled beauty standards rather than experience disabled joy in their own way.” Part of the author’s journey meant, “I had to get out of my own way. … I had to own the body I lived in and stop comparing it to everyone else’s.” But she advocates more than simple acceptance: “Sharp edges keep us alive.” “To make living in an ableist world bearable, it helps to find your rough edge and accept it is important. Sanding them down will only lead to misery. I tried so hard to fit in, in so many different ways. …None of it actually helped.” |
Ultimately, Sjunneson offers a transformative understanding of our shared humanity: “Wholeness is not determined by how many eyes you have or how many working ears you have. It doesn’t depend on which limbs work or how many of them you even have either. Wholeness is about personhood, and honoring the bodies of your fellow humans.”
In Being Seen, the author invites us to imagine a world where all people are valued, regardless of ability/disability status: “The nondisabled narrative is that we need to make disabled people fit the nondisabled paradigm, rather than shifting the paradigm itself to include [everyone]."
Highly recommended.
In Being Seen, the author invites us to imagine a world where all people are valued, regardless of ability/disability status: “The nondisabled narrative is that we need to make disabled people fit the nondisabled paradigm, rather than shifting the paradigm itself to include [everyone]."
Highly recommended.
For more by disability advocates, read my reviews of Disability Visibility and Disability Intimacy
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