Interview: Monica Byrne

Last month, I posted my review of The Actual Star by Monica Byrne. I had the pleasure of working with the author as a disability consultant, a job that was completely new to me that I hope to do again. 

Recently, Monica took time out of her busy schedule to chat with me about disability as it relates to her life and work. 

Monica Byrne grew up in Annville, Pennsylvania, as the youngest child of two theologians. She studied biochemistry at Wellesley, NASA, and MIT before moving to Durham, North Carolina, to pursue her career in fiction and theatre. 

Her debut novel, The Girl in the Road, won the 2015 Otherwise Award. Her plays, What Every Girl Should Know, Tarantino's Yellow Speedo, and Ohio!, have been performed around the world. 

She gave the first ever science fictional TED talk in Vancouver and hosted a film series on technology for ViceUK. Her essays have appeared in The Atlantic, Wired, and The Washington Post, while all of her previously published short stories are available on her website. 

Monica's second novel, The Actual Star, was funded entirely by her patrons on Patreon. 

While the book takes place in three different time periods, our interview focuses mainly on the characters and events of the year 3012, when the effects of climate change and a worldwide religion called Laviaja have radically transformed the way people live. 

Laura: How has disability (your own or someone else’s) influenced your life and work? 

Monica: Oof. I'm so glad you asked this, because disability has affected me and my work profoundly, though I hadn't thought of it in those terms. 

I watched both my parents go through many years of debilitating disability at the ends of their lives. In my mother's case, it was thirteen years; my father, seven. 

But since I was much younger--seven years old--when my mother was diagnosed with brain cancer, her journey affected me a lot more. 

You'd think it'd have made me more open, more understanding, more aware of disability issues. But it sort of did the opposite. When I think back on those years, I just feel fury and shame. 

How my mother wasn't like anyone else's mother. How I didn't want anyone to see her, and how much she'd transformed mentally and physically after radiation treatment, and how guilty I felt about that. 

How people in my hometown--even to this day!--can only seem to talk about her in terms of how she was before the cancer, and never after. (There are tears streaming down my face as I'm writing this in a café!) 

I just feel so, so angry that I felt there was no space to process it, no language, no options; that I was so alone in going through it, that the boys at school still bullied me every day anyway. 

It was awful, even with a loving supportive family, who were all dealing with it in their own ways. Even with therapy, which I started in eleventh grade. 

My coping mechanism was just to freeze it all out, focus on being the perfect student, and getting into a good college. 

Laura: How has that past and present experience shaped your vision of what the future could be? 

Monica: I think I'm only beginning to unlearn my shame and anger around disability. In high school I didn't know enough to direct my anger at an ableist world, and not at my mother or myself. 

But the more I listen to activists, the more I try to forgive myself, and the more I try to create the world I want to see in my work. 

A world where my Mom would have been welcome anywhere, and not I nor anyone else would have ever needed to feel shame or regret about her new needs or her new body. 

So in The Actual Star, it became very important to me to create a society that welcomed all bodies of all abilities. 

At one point, I posted a question on Facebook--you might remember it, Laura--about describing a blind character's actions without calling them blind, because I assumed that the word "blind" carried shame. 

Which I assumed because of my sad-scary experience with my own mother's blindness. But WOW I was wrong. And a lot of people told me that, and I'm glad they did. 

That's what led me to hire you as a disability consultant, because even with the best of intentions--trying to normalize instead of otherize--clearly I still didn't understand, and was still f*cking up. 

Laura: I think if we want to normalize the presence of a blind character in the future, we have to wrestle with all the factors that prevent blind people from being present anywhere they wish to be today. 

Which also means recognizing blind people's right to identify themselves any way they choose, including the choice to reclaim words that were used against them in the past. 

Laura: You mention in an interview that much of your worldbuilding was in response to the 2016 presidential election. 

You were also editing the novel in the midst of a pandemic. Did COVID-19 and the government response to it influence your future timeline in any way? 

Monica: Only in a couple of minor ways, since the pandemic hit so late in the editing process. There are two changes I can think of: 

(1) I added pandemics as one of the reasons why people started traveling in bands of [no more than] nine; 

(2) I added how relieved Niloux was to be touched after four months of being alone. When I wrote that line, I myself hadn't touched or been touched for months.

Laura: By 3012, the human body has gotten quite a few upgrades. We still reproduce sexually, but everyone has both male and female reproductive organs, so they can choose which reproductive role to play, and conception requires the consent of both parties. 

We have pelts that protect us from the elements. We can sprout gills and tails or induce lactation at will. Our brains even make their own fun drugs. 

Monica:  And we can photosynthesize, too! Which means we can go for long periods without "real" food. 

Laura: Right, no one has to worry about starving. A lot of this occurred in response to climate change, but what social changes did these developments make possible (or vice versa)? 

Monica: It's a huge thought experiment, right? What if we all had access to all the resources we needed? 

And those resources are themselves portable and omnipresent (or at least reside in places that are known and accessible to all)? 

Would that solve every social problem? Part of me thinks so, and part of me thinks it must be simplistic of me to think so. 

But how will we know unless we try? 

Laura: What other perks can we look forward to? 

Monica: Especially swair--the "wings" that are extensions of a pelt, and mostly meant to help you make soft landings. 

But hey, if the Zeinians get their way, we can tweak them to start flying for real... 

Laura: One of the biggest challenges facing disabled people today is the problem of access: access to care we can’t afford and/or our families can’t provide; access to public spaces, education, the work place, the voting booth, and the arts; and especially access to positions of power and influence. 

According to your glossary, Laviaja is “characterized by mutual aid, gift economy, panoptic justice, gender concordia, documented anarchy, and algorithmic skillmatching.” Essentially, everyone has access to everything. How else might life be different for disabled people in the future?

Monica: Ideally, in my Laviaja, every body is "normal" and no body's needs are stigmatized. Differently-abled bodies are not considered failures. 

So for example--in the Kaua'i chapter, there's a crying baby who needs to nurse, and Tanaaj gets up and picks her up right away. The baby (Mei Sakura) is coded as having Down syndrome. 

I didn't use that term not because I assumed there'd be shame associated with it (as in the case with blindness above), but rather because I thought in 3012, it would just be outdated--i.e., not considered a "syndrome," but just the condition of a body that has specific needs. 

I consulted with my dear friend Colleen, whose daughter has Down syndrome, to ask her what she noticed when her daughter was a baby, and that was really helpful. 

And meanwhile, other conditions that we consider "normal" are stigmatized in Laviaja. For example, jealousy is explicitly named as a mental illness! I'm sure there are people in Laviaja--especially the sedentix--who protest that label. 

But the point is, disability is socially constructed in every era and area. It's not a given.

Laura: Absolutely. I wanted to point out that disabled people today tend to avoid euphemisms such as "differently abled" or "handi-capable" because disability (just like blindness) shouldn't be treated as a dirty word. 

Trying to put a positive or neutral spin on it ignores the real hardships disabled people face when an ableist society denies them access and stigmatizes their needs. 

According to the social model of disability, a spinal cord injury, for example, is an impairment, but it only becomes a disability when wheelchair users are forced to live in a world where people must go to certain buildings and those buildings don't have ramps, elevators, or doorways a wheelchair can fit through. 

But I think your use of "differently abled" in the context of the future is appropriate. In 3012, there are still people who are blind, deaf, paraplegic, etc, but if they have access to the same resources as the sighted, hearing, and ambulant, and their needs are considered normal, we might say they are no longer disabled.

If anyone in 3012 is disabled, perhaps it would be the sedentix, who reject aspects of laviaja and choose to settle in one place, live in private homes, and form long-term monogamous relationships and nuclear families. Their behavior is pathologized as obsessive hoarding. Still, while many viajeras resent the sedentix, few try to harm them or deny them aid when needed.

Laura: Universal design is the principle of creating goods and services so they are accessible to the widest possible range of abilities. 

Rather than having separate, scarce accommodations only for disabled people, all spaces have features that some people need but everyone else can benefit from. 

Fugitech, the technology developed by and for climate refugees, really seems to embody this idea. All viajeras have access to hover chairs. Everyone has a customizable AI that monitors their medical condition and alerts them to dangers.

Augmented reality aids navigation and communication, and algorithms match one person's skills to the needs of another person in the area. 

What future innovations were based on tech currently being developed and which were inspired by other science fiction or your own imagination?

Monica: Hehe, so much fugitech! So I'll focus on three of them:

(1) The hoverdishes and hoverchairs are the descendants of wheelchairs, for sure. This is a nomadic society, and I quickly realized how ableist it was to assume that everyone could or would walk all the time. 

Survival is intersectional, or we don't deserve to survive, in my opinion. 

(2) The aug was inspired by none other than Pokémon GO! I'm not a video game person at all, but of course I was following the news when this virtual reality game that was mapped upon the real world was making people do things like run into actual traffic to chase a virtual character. 

What!? That kinda blew my mind. That summer, I started thinking about a much larger application of that technology--a virtual world mapped upon the real world, which wouldn't be just a game, but rather a universal network interface. 

(3) The kilns are pure wish fulfillment on my part. What if you could stick a glob of organic matter in a teensy little coffee machine-like thing and it spits out any food you desire? 

(Now that I think about it, that's straight out of Star Trek, isn't it--replicators. Though in my world, you still have to have a raw material--bia--to feed it.) 

Put another way, a lot of my invented technologies--taffies, fermites, fillers, filters, sealants, shields, swair, higgs--are just wish fulfillment on my part. They're all magic devices or powers I wish I had. Let the fugitechies figure out how to make them! 

Laura: You mention in an interview that you recognize the importance of peer review because of your science background and therefore consulted a number of experts when writing The Actual Star. 

How do you decide what subject matter requires an expert reader and which one to consult? 

Monica: There were some subject matters--ancient Maya culture, contemporary Belizean culture, Kriol language, Spanish language--in which I was very much a newcomer, so I always intended to hire consultants on those. 

But there are other areas--gender and disability, specifically--that I thought I could navigate by virtue of years of osmosis on social media. But I was wrong! I'm a cis able-bodied woman with a lot to learn. 

I ventured a couple of test questions to trusted friends--like the one I asked on Facebook, referenced above--and the response I got told me, wow, I was way off base. And if I'm wrong about that, what else am I wrong about? So I had to hire consultants on those, too. 

Laura: Your expert readers included two disability consultants, myself and Colleen Weiler-Beazley, but we worked separately. 

Did we approach the manuscript differently? What feedback did you find most helpful? What reactions did you find most surprising? 

Monica: Colleen only consulted on the breastfeeding scene, actually! After talking with her, I tried to develop a balance between showing how babies with Down syndrome--in the future, as now--have specific needs, but not special needs, if that makes sense. 

To me, the word "special" implies a social judgement of what's normalized and what's pathologized. Whereas the word "specific" just implies a certain set of needs that some people but not all people have. 

So for example, other babies just have trouble latching, period, and that's not necessarily pathologized--it's considered within the range of normal. 

As another example, I've been having a flare-up--uncomfortable but not debilitating--of cervical neck pain, recently. My specific needs are a certain kind of pillow and typing breaks (among other things). 

But none of that is pathologized in the same way, wouldn't necessarily be called having "special needs," because it doesn't interfere with my being a productive worker under capitalism. 

Anyway, that's how I was thinking of it. But now that I've written this, I'd love to hear how you feel about the phrase "special needs," and what I wrote above...? 

Laura: I agree. Most of us bristle at "special needs" because "special" is usually code for inconvenient, burdensome, or unreasonable. Our needs are the same as everyone else's; they're just met slightly differently.

For example, we all need food, which for some people means a peanut butter sandwich while for others, it's a feeding tube. 

The difference is that one is widely available and considered normal, at least in some locations and cultures, whereas the other is treated as specialized medical equipment that is difficult, expensive, and sometimes impossible to obtain. 

In my experience, a tube feeding really isn't harder than making a sandwich; it's just less common and not something most people are taught to do. 

One thing I liked about your vision of the future was that there are usually multiple ways for people to get what they need. For example, just because humans can photosynthesize and "print" food doesn't mean that's the only way to survive or that it will work all the time. 

Viajeras use the aug to identify edible plants. They always appreciate a home-cooked meal, "home" being the nearest wayhouse. When they use their otracortices to download massive amounts of information directly into their brains, someone is assigned to feed them while they're recovering.  

Laura: What issues related to disability were the most challenging to write about? Were there any scenes, characters, or other aspects that you changed based on my feedback? Did we ever disagree? 

Monica: Honestly, I experienced your notes as illuminating, far more than challenging. I just realized how embedded my own personal ableism is, and how embedded it is in language, art, culture--everywhere. 

You made the 3012 timeline so much better by pointing out: 

(1) All the mobility obstacles (so many stairs!). 

(2) The learned behaviors (why would someone be ashamed to accept help with walking?). 

(3) The missed opportunities (how ai could play a role in determining ability to consent to sex [when under the influence]).

(4) The ableist terms ("idiot," "dumb," "blind spot")

(5) The disabilities in my characters that I never saw as disabilities (Tanaaj's separation anxiety, Niloux's ADHD). 

I don't remember any points on which I disagreed with you--more, I was just grateful to learn. 

Laura: And I was equally grateful for the opportunity to be a part of this amazing novel. 

The Actual Star is now available in the US, Canada, Ireland, and the UK. 

If you've finished the novel (or don't mind potential spoilers while you're reading), join our Facebook Group, The Tzoyna. There's so much more to discuss!