Congratulations on your first memoir, Being Seen: One Deafblind Woman’s Fight to End Ableism, available October 26, 2021 from Simon and Schuster! How are you feeling right now in anticipation of the launch and public response?
Pretty scared, to be honest with you! Everyone has been very kind and the critical response so far has been positive, but writing a memoir at 35 is very different from writing a memoir at 60. A lot of the people I talk about are still alive, and they may not all be happy about what I’ve said about them, but I had to be honest. That honesty feels really vulnerable right now, but it also feels right.
But it isn’t just the reaction of family that has me nervous! The United States is a fairly ableist place to live – it’s the kind of place where being as honest as I am about disability (mine specifically) might have costs – costs related to my employment status, for example.
But the general public response has been really positive. I’ve been blown away by the reviews thus far, I’m really honored that people are listening and reading!
You are an editor, writer, educator, and speaker. What led you to write a memoir and why now? What was the experience like writing the book proposal and getting it sold to Simon and Schuster?
I can remember when I had the idea for Being Seen. I’d been writing a series for tor.com called Constructing Blindness, and I was looking at a variety of shows that included blindness as a topic. I was helping move my grandmother, and I had a few spare minutes when it all clicked. I remember writing down a chapter list and realizing I had a book about how disabled women existed in media spaces, and how I wanted to write it.
I’ve been working in the hybrid of criticism and memoir for over a decade. I remember in grad school getting criticism for it – but I think it’s a style that works incredibly well for me. I’m leading a life that’s very different from everybody else, and I think being able to point to real experiences of disabled people, and how it intersects with media helps break the stereotypes I see every day.
The proposal felt easy in some ways, since I’d been working in the world of media crit and blindness representation for so long! But the selling process was incredibly intense!
Some people work for years on a book while others have shorter deadlines. What was the process of writing and editing like for you and the emotional impact it had on you as a person especially during the pandemic?
I had about 8 months to write my memoir. Though this is the culmination of years of work – I had seen a lot of the movies, read a lot of the books that you’ll read about in Being Seen – before I ever started writing. I still had to do re-watches, and glance over books to understand what I was writing and find specific examples sometimes. But the process was difficult – as some who follow my social media might know, I was in the middle of a divorce while I was writing the book. Sorting out my feelings about leaving the East Coast, ending my marriage and also writing very publicly about difficult things that happened to me in my life was immeasurably difficult.
There is some content toward the end of the book about what it was like to heal during a pandemic that was endangering my life, and the life of my peers in the disability community, and how that made it more difficult to tell my story sometimes.
Editing is when a book really becomes a book in my opinion. Did your experience as an editor help you as you worked with your editor? What do you enjoy the most and least about the editing process?
A lot of editing this book was in how it ended up getting structured. I actually really like playing with structure! My editor Emily encouraged me to be myself in the chapter titles, which I think really helped create the book that is coming out today.
I also want to give a shoutout to my partner (called Arthur in the book) and my crit buddy Meg Elison who both helped me figure out how to shape the book really beautifully.
Are there particular narrative pitfalls and conventions you were mindful of when writing your memoir? What are some specific ways you structured your narrative?
So there is a chapter that I had to write that I didn’t want to. Since I talk about different genres (science fiction, fantasy, horror etc) I realized I had to talk about the romance genre. The romance genre does a lot of damage to the disabled community, since it spends a lot of time talking about how we aren’t lovable in certain texts. So I wrote a sex chapter. Where I talked about my actual sex life.
It was really uncomfortable for me to do so, and I’m still not feeling super great about discussing my sex life out there in public – but I did feel like it was important for me to be honest about the fact that I am a sexual being and that disabled people in general do have sex.
That’s the trap with memoirs, you have to be honest no matter how uncomfortable it makes you!
Ableism is a term that may still be unfamiliar to a lot of nondisabled people. What is a succinct way of describing it? Why is it so important for nondisabled allies to unlearn and end ableism?
As I explained to my partner’s 5 year old daughter, ableism is how non-disabled people make the world unsafe for disabled people. It is a social structure that gets used to hurt people. So it’s important for non-disabled people to learn about because much like other -ism’s, it’s a system that directly benefits non-disabled people and it often goes unnoticed because of that. It’s important for non-disabled people not only to unlearn it, but to end it, because like lots of structural -ism’s, it’s not actually doing anything good or useful for anybody! Does it benefit non-disabled people to keep disabled people out of the employment pool? Not really. Does it help to not have curb cuts? Absolutely not. Does it actually make anybody happy to deny a service dog entry somewhere? Nope.
People participate in ableism because they are unthinking, not because they actually benefit from anything.
What changes would you like to see from the publishing industry that will open up opportunities for Deafblind people?
The pass pages process is really frustrating as a Deafblind person. It took me twice as long and I had the same amount of time as every sighted author. So we need to create better supports for disabled authors. We also need to unlearn ableism – we need to trust that a Deaf author can record their own audiobook if they say they can. We need to offer opportunities that we’re unsure of as publishers, because disabled voices matter – even when they aren’t the voices you’re used to.
Disability is not a monolith and Deafblind people are definitely not a monolith. What are some tropes you would like to see abolished in popular culture about Deafblind people?
We are not all like Helen Keller! I’m so tired of that question! Some of us can see better, some of us can hear better, some of us can sign (some of us can’t) – I think the thing I would like popular culture to do is stop making it look like we aren’t individuals, with individual experiences and bodies. The idea that all disabilities look exactly the same harms us every day in real time.
Is there anything else you’d like to share about Being Seen or your future plans?
I’m excited about future work. I have a few books on the backburner, I’m researching my next cultural criticism project (those take a while!) and writing an Assassins Creed novel (which is out in March of 2022) and finishing a novel! So I’m certainly keeping myself busy. I’ll also have a project about Deafblindness out with Radiolab later this year, which I’m really excited about, because I think it gave me the chance to reflect on the cultural relationship of Deafblindness to society.
I hope the people who read Being Seen will know that this is only one Deafblind perspective – but that mine can be a gateway to finding the truth about disability – that we’re all individuals and our experiences are worth hearing.
Elsa Sjunneson is a Deafblind author and editor living in Seattle, Washington. Her fiction and nonfiction writing has been praised as “eloquence and activism in lockstep” and has been published in dozens of venues around the world. She has been a Hugo Award finalist seven times, and has won Hugo, Aurora, and BFA awards for her editorial work. When she isn’t writing, Sjunneson works to dismantle structural ableism and rebuild community support for disabled people everywhere. Her debut memoir, Being Seen: One Deafblind Woman’s Fight to End Ableism, releases in October of 2021 from Tiller Press.
Support Disability Media and Culture
DONATE to the Disability Visibility Project®