[Image Description: The cover title for Elsa Sjunneson’s memoir “Being Seen: One Deafblind Woman’s Fight to End Ableism” written in all capitalized white and grey letters. The cover has a black background with the “I” in “Being” shining a light and illuminating the right side of the cover.]
Set to be released on October 26th, 2021, Being Seen by Elsa Sjunneson should fly to the top of your TBR list as soon as it hits the shelves. Pairing her autobiography of Deafblind experience with academic analyses of ableism, Sjunneson delivers difficult concepts and taboo conversations to an accessible place for all audiences along with a healthy dose of snark and wit.
Elsa Sjunneson is a Deafblind speculative fiction writer and editor, educator, activist, and public speaker. In 2019, she was the first Deafblind person to win a Hugo Award for her work on Disabled People Destroy Science Fiction, and was the winner of an Aurora Award for her work on the same piece. She has also been a finalist for the Best Game Writing Nebula Award, Best Fan Writer & Best Semiprozine Hugo Awards, and winner of the D. Franklin Defying Doomsday Award.
In her newest book, Being Seen: One Deafblind Woman’s Fight to End Ableism, Sjunneson shares her personal memoirs, combining them with her academic and activist experience to highlight the rampant ableism that, in her words, spreads like radiation poisoning. This book challenges any preconceived notions that anyone has of the fragility of disabled people by the bottom of the first page.
For disabled people, this may be old news. However, I think Sjunneson does something I have not seen before – she delivers the harsh reality of living your best disabled life and breaks it down into accessible pieces that she introduces to you chapter by chapter. She is not shy about discussing taboo topics, highlighting her experiences with inaccessibility (garbage elevator, anyone?), sexual and romantic relationships, religion and faith, internalized ableism, harassment, and objectification. She details her reaction to street harassment – how police doubted her firsthand testimony because of her disability – and uses gender politics to further examine how a female-presenting gender complicates matters of disability and ableism even further.
Sjunneson does not mince words, and even though much of this book contains academic ideas and intense analysis of television, film, and other media, she introduces these ideas and guides you through her arguments with exceptionally clear logic. She even brings to light new phrases to describe her arguments, such as Diagnosis Capitalism, using “radiation poisoning” to describe ableism in American culture, or her addition of intersectionality in her definition of “passing.” Sjunneson politely invites you to partake in some ontological shock, perhaps, and encourages you to question the world you live in, to see the dark underbelly of familiar media and common, yet unjust, behaviors. She specifically returns to the idea of personhood for disabled people, and how it is often overlooked or ignored by media tropes that later translate into cultural behavior.
“’I don’t think of you as Deaf/blind/disabled.’ When people say that, it has the opposite effect of what I assume they intend. In their minds, having a disabled body is a negative trait, and since mine does not seem ‘that bad’ I can’t be disabled. But to me, it feels like they’re not seeing me at all.” (p. 24)
In the end, however, Sjunneson becomes a new voice of strength and reason for disabled people, by reminding them to own the personhood that they are often denied. I found myself and my own battles as a disabled woman reflected in her story – her concerns about how “disabled” she really is, her worries about the presentation of her disability, finding love as a disabled person, and overcoming her need to fight against a disabled identity. I also love how she highlights the struggle within many disabled women to both
- Defy their disability to try and prove their worth, risking their safety, comfort, or accessibility to be seen as equal and worthy, while also
- Want to be vulnerable without giving into the stereotypes that try to define them as weak, helpless, or infantile.
To finally see these thoughts and feelings put into such eloquent public words is a balm on the heart.
Being Seen is an excellent introduction to disability theories and the fight against ableism for both people who have never thought about it and for people who are living through it themselves. The language is clear, the endless footnotes provide context where it is needed, and the snark brings lightness when the subject matter becomes dark. Be warned – this is a book that will make you feel things. This book made my heart ache, it made me laugh out loud, it made me so angry with its honesty and rawness that I had to put it down and walk away. But it’s Sjunneson’s insistent and clear authorial voice that makes you want to come back and keep listening to her story.
For nondisabled people, take two or three days out of your life, get out of your own head and get into someone else’s, someone who may be totally and completely unlike yourself. Our world is better off when people develop empathy and understanding for each other, and with disabled people often occupying the smallest space in social justice and activism, it is high time our stories are heard and listened to. Sjunneson will teach you that disabled is not a bad word, and through this book you may learn how to support the disabled members of your family, your business, your classroom, and your society.
“If you are inspired to do anything by this book, it should be the work of dismantling the ableist system we live in.” (p. 17)
And for shit’s sake, Sjunneson reminds you, keep on living.
