Elsa Sjunneson’s debut memoir, Being Seen: One Deafblind Woman’s Fight to End Ableism, is one part personal history, one part sociology, one part media criticism, all wrapped up in an inclusive package that invites the reader to examine the ableist world around them. In this interview to celebrate her debut, the author discusses the origins of the memoir, the process of putting it together, and what we can look forward to next.

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Crafting a Non-fiction

Where did you get the idea for Being Seen? Is it the culmination of previous work or something else altogether?

I’ve been writing about blindness in media for about ten years! This feels a lot like the culmination of things like my tordotcom essay series, and the many panels I’ve done about blindness and Deafness on tv and in movies. I don’t think I’m done with the topic, of course, there are always new movies and books being written that need to be discussed, but it felt like a good way to discuss the topic in a broader way. 

Where I got the idea though was a pretty specific moment. I had been talking with a friend about wanting to write a book about media and disability, and while I was helping my grandmother move it suddenly all sort of… fell into place. I sat down with a yellow legal pad and a pen and I wrote, and wrote, and wrote. I had realized that the only way to tell the story of media and disability was to talk about the ways in which it didn’t reflect reality. 

How did you go about structuring the sections and piecing the thesis together?

I’ll admit that putting the book together was a lot like playing with big pieces of a puzzle that had to fit together correctly. The structure was one of the hardest parts for me, because the logic had to flow for the reader. For example, the chapter about gender and disability had to go ahead of horror, romance and motherhood – but it wasn’t necessary to go in front of the medicalization chapter (except it ended up being really important!) When I finally figured out how the book needed to flow it was a very satisfying feeling. 

Is there anything in your research or anecdotes that didn’t make it into the book? Are there pieces that you’re excited to share with us?

I had wanted to write an entire chapter on comedy, and it just didn’t quite come together in time. There’s a lot of comedy that relies on disabled people being harmed (the segment on Mr. Magoo is a great example). But there have been recent examples too like The Hustle which came out in 2019. It relies on the trope of a sighted person pretending to be blind as a con – which links into a lot of the assumptions that disabled people are fakers. 

I also didn’t end up writing about the AIDS pandemic at all, though I thought I was going to have to. It turns out that’s a whole different project that I plan to write at some point. Different story, different narrative. 

I think one of the things I’m most excited to share with people is the read/watch list which I’ll be releasing on launch day! It will be a chance for people to see exactly what I watched, even if the movie or book or tv show didn’t make it into the text. I did a lot of research, and my brain is very very full.

Mostly I’m just excited to have made something people seem to be connecting with. It feels pretty amazing to see people find themselves in the text. 

Is there anything about the process you wish you knew earlier? Were there any surprises?

I think I was surprised that I had to include my sex life in the book. I worked really hard to not have to write about it, but ultimately it was really important to me that non-disabled readers understood that I was a sexual being – that disabled people in general are and can be.

I don’t think there’s any way to really prepare for releasing a memoir though. It’s all weird. I’m not sure I was prepared for the intense level of privacy that I’ve started to crave as the book launch has come up. I don’t actually want to share details of my life, I want to keep things private because I’ve put so much out there on the line for the public to view. It’s a really unusual feeling, and I’m not sure it’s going to ever go away. 

Road to Publishing

In terms of the queue of projects, where did Being Seen fall?

Being Seen was my second project to go out on sub, and it sold at auction on proposal. I spent a lot of time leading up to it doing the work that I didn’t know would really fall into the text – many of my livetweets from five years ago about different TV shows and movies that included Deaf and blind characters made their way into the text, even if obliquely. 

What are you working on now?

I am in the middle of editing my Assassins Creed novel – Sword of the White Horse – and starting prep for my next non-fiction project. I am also percolating on a novel which I’m hoping to focus on once the AC novel is in to the publisher! Impending cyberpunk nonsense will happen! 

Which books that are coming out or that have come out are you looking forward to reading?

I, like many people, have been struggling to read over the last… while. But I’m really looking forward to Lillie Lainoff’s One for All (which is currently sitting on my kindle in ARC form and I am looking forward to devouring it). I’ve been reading a lot of non-genre fiction, too and am excited about reading the work of Patrick Modiano.

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