Ejecting Ableism to Another Planet

As an avid science fiction fan, I first heard of Elsa Sjunneson through her work in that speculative field and learned very quickly thereafter that she is Deafblind. First impressions are important, though, and I have continued to think of Sjunneson as a science fiction writer who is Deafblind, not a Deafblind person who writes science fiction. Based on her memoir Being Seen: One Deafblind Woman’s Fight to End Ableism, I now know that she is a person who does a great many things, from fencing to burlesque. She is also an activist, an editor, and a traveler. Being Deafblind is simultaneously the most significant thing about her, and perhaps the least important.

The book opens with the type of personal summary one might tell at an icebreaker event—if one were the only disabled person in a room full of able-bodied people. It primarily addresses readers as though they are unfamiliar with the disability community—and while many readers will come to the book from science fiction or other communities and may indeed not be familiar with the idea of a Deafblind writer-slash-skier, many other readers will come to the book from the disability community and may feel puzzled by the suggestion that they’ve never heard of a disabled person learning foreign languages, or famous Deafblind people like Helen Keller. Indeed, the second chapter is called “We Need to Talk About Helen”—because for much of Sjunneson’s life, nondisabled people have sought to compare her to Keller. Sjunneson then adeptly explains not only why the comparison is inaccurate, but why it is offensive to her, despite both women being Deafblind radicals.

Sjunneson’s Deafblindness is an anachronism, and she knows it. The cause is congenital rubella syndrome, commonly known as the cause of the “rubella bulge” of the mid-1960s. By the time Elsa Sjunneson was born in 1985, the syndrome had been largely eradicated, and its primary cohort was already in college. Being born 20 years later than the largest congenital rubella syndrome cohort meant Sjunneson learned for herself what it means to be Deafblind, unconnected to a larger community. Her sadness at missing out on the communal experience is juxtaposed with Sjunneson’s journey and childhood loneliness, which can be felt in personal vignettes throughout the book.

Living as a Deafblind child in a hearing, sighted world is not the only source of Sjunneson’s worldview and activism. Her father was sick with HIV and died of AIDS, prompting her work in healthcare justice alongside the queer community; challenging what roles were “appropriate” for her as a girl that also prompted her feminist work. Being Seen is infused with the lessons she learned from her Deaf-blindness and other disabilities filtered through a lens of critical disability theory and disability activism. After describing the heroic depictions of doctors both in Grey’s Anatomy and on the news, she explains that “when disabled people resist cures, or resist the ‘conventional’ treatments in order to do what is best for their bodies, they become not just the problem but the antagonist [in their story]” (p. 201). Her insight may stem from personal frustration at (for example) the hearing world’s push for cochlear implants. Sjunneson connects her own experience with activist theory clearly, as in Chapter 8’s analysis of the intersection of disability and gender.

The book is written conversationally, directly in the author’s own voice (as is the audiobook, which she narrated in spoken English). Excitement shines through exclamation points, memes are quoted, and sentences trail off into ellipses. The style makes Being Seen an easy read; Sjunneson is chatty, and the text moves quickly. She explains complex ideas in an easygoing manner, and I found myself nodding in agreement as I read, as though she and I were at a dinner party together, and she was explaining her thoughts to me personally.

At heart, Being Seen is a memoir...