In the opening moments of Warrior Nun, Netflix’s adaptation of Ben Dunn’s comic book, Ava, the show’s kickass protagonist, muses, “My whole life, I’ve dreamed about being dead. I leave my body and I see myself from above, a normal girl. Just normal. I stare at her perfect normality until I wake up and realize I am still the freak I’ve been my whole life.”
Warrior Nun is a fantasy series and Ava wakes up in a morgue, so it’s fair to wonder what she means when she says “freak.” A vampire? A zombie? A ghost? A lich? A ringwraith? A Babadook? But no. What she means is she was a disabled human being, a quadriplegic wheelchair user. When she wakes up from the dead, she wonders if she’s in hell, but decides she doesn’t care, because at least she can use her legs. To emphasize the fact that she’s no longer “a freak,” she goes running along the beach and out dancing in a club and the editor works double-time to focus again and again, solely, on her legs.
A mysterious man, the leader of the Warrior Nuns, shows up looking for her at the orphanage where she lived, but the nuns have no idea where she could be or who she could even be with. Look, here’s her empty hospital wheelchair. And she was quadriplegic; obviously she had no friends. When the Warrior Nun leader finally does find Ava, he explains to her that she’s not quadriplegic (or dead) anymore because she’s got a divine artifact nested in her spine. She’s a Chosen One of the Order of the Cruciform Sword, and now that she’s no longer disabled, she can fight the demons the ancient order has been battling for centuries.
I dream about riding my bike every night. Sometimes I’m riding it here in New York City, dodging potholes and pedestrians and finally arriving at the East River, the smell of the ocean — seaweed and brine and sulfur and sunshine — on the edge of the breeze. Sometimes I’m back home in the north Georgia mountains, the crunch of red clay and fallen leaves under my tires. Sometimes I’m in Salt Lake City again, skirting drifts and the glorious sting of the world’s best snow on my face. Sometimes I’m a little kid, on my green Huffy with the spokey dokes or my Strawberry Shortcake banana seat bike with the white basket. I learned to ride on that Strawberry Shortcake bike. My dad got teary when he took off the training wheels, and I thought, “Now I’m free!” (I was four.)
These are the names of all the bikes I’ve ever owned: Strawberry. Pinky. Charlotte. She-Hulk. Smurfette. Ramoth. Bilbo. Minerva. Summitt (two Ts, not one; as in Pat, not a snow-covered mountain). Brisingr. Smoky Mountain Rain.
I used to ride my bike every day. It’s been eight months since I’ve been able to pedal even just a few blocks to the park. I got COVID in March, in the first terrible wave in New York City, and now I’m disabled. I’ve traded my bike for a variety of mobility aids, which I need to function on the rare times I’m able to leave my house. Sometimes a wheelchair, sometimes a walker, almost always a cane with a fold-out seat. I saved and saved and saved to be able to afford Smoky Mountain Rain. The nicest bike I’ve ever owned. A Specialized Sirrus Elite Carbon. These days I use it as a drying rack for my compression socks, which I need to wear all day every day to keep from passing out when I stand up.
In the months between my acute COVID infection subsiding and my diagnosis of Dysautonomia and Postural Orthostatic Tachycardia Syndrome, I was basically unable to get out of bed. So I turned to the only other thing that has been as important and spirit-sustaining to me as biking throughout my life — fantasy stories.
The Lord of the Rings. Harry Potter. The Lion, The Witch, and the Wardrobe. The Rage of Dragons. Star Wars. Star Trek. Buffy. Battlestar Galactica. Discworld. The Eye of the World. Ender’s World. The Hitchhiker’s Guide to the Galaxy. The Hundred Thousand Kingdoms. Kindred. The Kingkiller Chronicles. The Left Hand Of Darkness. The Graceling Trilogy. The Broken Earth Trilogy. The Parable of the Sower. The Sword of Shannara. The Sword in the Stone. Xena. Binti. Korra. She-Ra. The Dispossessed. Children of Blood and Bone.
Who knows how many times I’ve lost myself in those books and TV shows and movies. I’ve been doing it my whole life. My heroes make me feel like a hero. Their swords are my swords. Their spaceships are my spaceships. Their triumphs are my triumphs. I couldn’t revisit my favorite fantasy novels in those months. The brain fog and fatigue from my Dysautonomia were too intense. So I decided to try Warrior Nun, because so many queer people on social media were gushing about it.
Two of the main tropes writers use with disabled characters are Better Dead Than Disabled and Magical Cure. The outcome of each trope is the end of a person’s disability, either by ending their life or by applying science, a holy miracle, willpower, or literal magic to cure them — but both tropes are rooted in the same failure of imagination. Most writers are simply unable to imagine a world where people with disabilities live fulfilling, happy lives. The Magical Cure trope is especially prevalent in fantasy narratives, largely because fantasy writers can bend their worlds to do whatever they want them to do, and because fantasy arcs usually involve overcoming adversity — often with physical prowess — and receiving a reward for it.
This is all compounded, of course, by the ways that we, as a culture, talk about sickness. We fight off colds and viruses, we battle cancer. When Donald Trump inevitably contracted COVID in early October after parading around for months without a mask and in the company of countless other people who refused to wear masks, Americans were told he’d be just fine. Former Press Secretary Sarah Huckabee Sanders said, “He’s a fighter.” His doctor praised his “strength and stamina.” When he left Walter Reed Medical Center, #TrumpStrong trended on Twitter and Georgia Senator Kelly Loeffler tweeted a video manipulation of Trump tackling Vince McMahon, whose face had been replaced with the Center for Disease Control’s now infamous COVID illustration. Meanwhile, evangelical religious leaders invoked the language of spiritual warfare: “We know that Trump is under attack physically, spiritually, and politically — and we need to lift him up in prayer for protection and healing.”
So then, those who are mentally and physically strong overcome illness; and those who are weak stay sick. Those who are righteous are healed by God; and those who are wicked remain unwell. And most of all: We have control over what our bodies will and will not do. If we don’t prevail in our “battles” against illness, we must not have wanted it enough.
I am only eight months into having a disability, and oh, I have had some dark days. The pain, the nausea, the air hunger, the weakness, the cognitive dysfunction, the lead-in-my-limbs fatigue. The inability to just hop on my bike and pedal away my stress and anxiety, with nothing but freedom and wind in my hair. The adrenaline, the endorphins, the dopamine, the sunset over the river: all of it, just gone. The inability to make plans with my friends because I don’t know from day-to-day — or even hour-to-hour — what my body and brain will be able to tolerate. Sometimes I lose my words in mid-sentence. Sometimes I also lose the ability to sit up. Before, it would take me four hours to write a 1,500-word essay about TV. This one has taken me four days.
The hardest part, though, is the desperate, grasping feeling that I’m losing myself. I have always been the strong one. The tall one. The big one. The tough one. The overachieving one. The one who is still standing and still going when everyone else has lost the energy or willpower to “soldier on.” I have never, not even once, had a hard time imagining myself as the protagonist of whatever fantasy story I was lost in.
Warrior Nun came to me when I was more physically and mentally weak than I ever have been in my entire life, and it said, “Your inability to do the things ‘normal’ people do makes you a freak; heroes aren’t confined to their beds.” The message of the President of the United States and his followers came right after, and it said, “Strong people don’t stay sick in the face of COVID.” And the religion of my childhood followed with the declaration that God heals those who do right in his eyes.
There’s a scene in one of the final episodes of Steven Universe where the entire gang is facing down big bad Blue Diamond, and one-by-one, they’re all defeated by her. Her weapon is her ability to suck hope and happiness out of the people and gems fighting her. Even Garnet finally falls, on her wedding day! And that’s when Lapis Lazuli arrives. Lapis who’s been trapped in a toxic fusion at the bottom of the ocean. Lapis who’s been captured, interrogated, and imprisoned over and over by Homeworld. Lapis who’s been betrayed. Lapis who’s hurt the people she cares about most because she herself is hurting.
Blue Diamond casts her despair out over the entire group and they cower — except for Lapis. Shocked, Blue Diamond says, “What??” And Lapis flicks away her tears and says, “I’ve felt worse!”
Lapis doesn’t overcome her physical and mental pain; she fights with it, and because of it, and it’s the reason Steven & Co. defeat Blue Diamond in the end.
I keep writing that I lose myself in fantasy stories, the same way my mind clears and my body completely relaxes when I’m on my bike — but maybe that’s not really it.
Joan Didion said we tell ourselves stories in order to live. N.K. Jemisin, three-time Hugo Award winner and the greatest living fantasy writer, took it a step further: “What a lot of people don’t get about fantasy is that one of its purposes is to mirror the self. Technically, all fiction does this! But fantasy in particular highlights the myths that undergird our culture and personal histories, as well as those that outline the agency we’re permitted. Basically, fantasy teaches us who can be a hero and how heroism actually works.”
My life is hard in different ways than it was before I got sick — but it was hard, in many ways, before too. I’ve lost things I love, and I’m struggling to redefine myself with my new limitations — but I’ve had new and wonderful experiences I never would have done if I hadn’t gotten sick. I’ve felt so much better — but I’ve also felt worse.
Warrior Nun gets fighting all wrong. Fighting isn’t a divine gift that manifests itself as easy and wholly able-bodied bliss. Fighting isn’t only the ability to stand up, to run, to do gymnastics and punch and kick.
Strong is fighting. It’s hard, and it’s painful, and it’s every day. It’s what we have to do. Buffy Summers said that. She also said she was a freak, which I guess makes me a freak too, but not because I need a wheelchair.
It’s such bad taste to paint disability this way. If they had thought about it it could have been about being disabled and the unique way it could shaped the hero story but that would have required insight. Thank you for writing this!
You hit me right where I live with this one… that disability grieving is real and relatable. Thanks, from a fellow POTsie. <3
Yes! I couldn’t make it past the first episode because I was so annoyed by the magical healing/everything is perfect now.
Thank you for this Heather, the “battle” narrative has been a great frustration lately and I hadn’t realised how pervasive it is. I can’t fight long covid but I can live with it and appreciate the things I wouldn’t have done had I stayed well.
A kind-of related question, if you (or anyone else) had difficulty mentally adjusting to needing a mobility aid, how did you deal with that? I got a walking stick with a seat a few weeks ago and the one time I used it to go out I could feel a huge difference in my fatigue and pain levels but I can’t describe how much I hate using it. I’d appreciate any thoughts on how to get past the internalised ableism and be comfortable using a stick.
It’s awesome that your walking stick is making a difference for your with fatigue and pain levels! Hurray!
Mobility aids are fantastic; having to deal with internalised ableism is really hard.
In terms of using a walking stick and addressing internalised ableism, things I’ve found helpful include:
1) Curating an online space for myself, which is filled with other visibly and invisibly disabled people (I personally think Tumblr is great for this).
2) Watching and listening to other (queer) disabled people talk about using mobility aids (e.g. Annie Elainey on YouTube, Disability after Dark podcast)
3) Telling friends, family, colleagues, people I don’t know on the internet that I use a walking stick. I pre-empted a lot of my awkwardness by loudly announcing that I would henceforth be using a walking stick and it would be likely that they’d see me with said mobility aid.
4) Trying to channel my inner dandy. Maybe I don’t *look* dandyish, but I get to decide how I feel about using a walking stick.
5) Flirting with people, while out and about with my walking stick.
I hope these things are helpful. Sending lots of solidarity to you!
Thank you for these tips, Kate! I’m getting so frustrated at myself by how weird I’m being about my mobility aids! Like, I keep moving them out of the way when I take photos of my cats, or re-taking photos if I can see them in the background, which is BANANAS. Why am I doing that? It helps so much to know that other people struggle with that too and that you’ve developed so many rad strategies to overcome that internalized ableism!
Glad I could be helpful!
Also, Heather, please be super gentle with yourself. You don’t have to feel ok about mobility aids *immediately*. It’s absolutely a journey (one that I’m still on, especially since using other mobility aids around the house and since becoming increasingly disabled).
You know what I thought when I read your first article about living with chronic illness and when I saw the photos of you? I thought, ‘Heather’s using a walking stick, just like Gentleman Jack’.
I love this comment thread, this is a hugely important topic that is not discussed often enough. It is really interesting to look at the language our culture uses to describe disability. Phrases like ‘confined to a wheelchair’ make my blood boil! The wheelchair is NOT confining the person, quite the opposite, the wheelchair is the tool that they use to get out into the world.
We need to flip the narrative from the problem being the physical limitations of the person, to the real issue: the limits society creates for people with disabilities. The obvious barriers are things like steps & narrow doorways stopping wheelchair users accessing a building. Thankfully this is improving through the mainstreaming of universal design principles. But the less obvious and possibly more limiting problem is negative societal attitudes.
Luckily us LGBTQI folk are experts at challenging and changing society! Let’s start thinking of our walking sticks, wheelchairs, compression socks etc as our latest fight for equality. I used to be terrified of holding hands with a girlfriend in public, what would people think? Now I’m proud to be out, because I eventually realised: that’s their problem, not mine.
We know that VISIBILITY MATTERS. So why not challenge expectations for what accessories a young, cool, lesbian has? If we’re nervous about doing this for ourselves, then maybe we could think about what being ‘out and proud’ about our disabilities will do for the generations coming after us?
Thank you so much for these ideas! Being able to see and hear from other people is something I think will help so I will definitely check out Annie Elaine and the podcast.
Talking about it more would be a good idea too, I just feel embarrassed to need a stick even though it’s just a lump of aluminium and plastic that makes my life easier. I will try sharing it more instead of avoiding that conversation.
I do like the idea of channeling Anne Lister 🎩 maybe I will go to one of my favourite places to walk next week and pretend I’m her. I’ve barely been since I got ill because they don’t have many benches but now I can sit when I want it would be a good place to enjoy nature and learn to get along with my stick.
Any recs for good sticks with seats?
I used to struggle with having to use a walking stick too. It shifted at some point as I was able to go on a short hike with my partner near my place in summer, wearing sturdy sandals that could go into water. I was able to gauge the depth of the water and where the ground was with the crutch, and it made enjoyable a hike I would have found dangerous otherwise, and I felt gratitude.
The fact my partner does not seem to consider I am less attractive with the crutch helps, too. I had to dump (for other reasons) a previous partner that started to act strange about what they thought I could do or not when I started having to use the crutch more frequently. (And I have to state limits around friends who seem to think I am just as able as I used to be thanks to the crutch! It’s a process, I have to learn how to work with this new info on mind.)
Also, my crutch is a deep metallic blue, which looks kinda cool. It’s just luck, my mother bought it for me more than 20 years ago, as I had sprained an ankle, but the aesthetic does make a difference. More on that topic on the pics from this interview of Selma Blair, which contain the brand of the stick she uses for the photo-op : https://www.vanityfair.com/hollywood/2019/02/selma-blairs-transformation
Also, totally seconding Eva’s request for recs concerning walking sticks with foldable seats that do not look like cat barf. Please, if anyone is reading this, let us know :D
This is so powerful and so beautifully written.
The conflation of morality/strength with being able-bodied (or really the conflation of disability with immorality/weakness) is such horseshit – and it is a toxic message that is disturbingly ubiquitous. You really hit the nail on the head here with this critique. Life and people and strength (real strength, in all of its many forms) are all just so much more complicated and interesting than that, and I wish more of our stories reflected that fact.
Thank you so much for sharing your thoughts and experiences.
heather, i am so grateful for your writing– thank you.
Thank you so much for articulating why it’s so frustrating when people refer to my existing with chronic pain, illness, and disability as “brave” or people as insert illness here “warriors”. I live with RA, fibromyalgia, peripheral nerve pain and damage, and chronic migraines. I remember having similar feelings breaking down sobbing in a movie theater showing of Dr. Strange. I had terrible unrelenting stabbing nerve pain in both wrists and hands and would have given anything to feel useful again let alone turn that pain into achieving nirvana and manipulating space and time! Anyway, much love and solidarity! ❤️❤️❤️
Thank you for this and for sharing your whole journey with us, Heather. Disability is so often used as a trial or a character trait that shows that someone is beaten down or worthless, and it can be so hard to fight that narrative as a disabled person.
This is exactly the article I needed to read tonight
This is so good. I’ve had an invisible disability since I was 12, and my wife is disabled too. It’s a constant frustration, the way things are portrayed.
Heather! I’m so glad you were the one to write this.
I really like this–your criticism of Warrior Nun, your broader discussion of how fantasy stories depict strength, and your reclaiming/redefining of what strength means.
I was surprised, though, that you chose to continue framing this revised understanding of strength in terms of “fighting.” I mean, it makes sense that you do, because Lapis’s story and Buffy’s words do that too: “Strength isn’t about physical force/skill, it’s about continuing the FIGHT even when that feels impossibly hard.” I realize there doesn’t have to be anything wrong with this framing of things.
I guess that framing just hasn’t worked well for me personally in navigating disability. When I try to “fight” my pain, I end up fighting my body. When I try to “fight” hopelessness, the part of me that was already feeling hopeless ends up feeling shamed and alienated too, which… does not make me feel less hopeless. Even when it comes to my values, including but not limited to disability justice, “fighting” just makes me feel disconnected from what I actually believe.
So I’m finding other ways. I strive to uphold justice, and I interrogate ableism. I am learning to set and keep boundaries instead of fighting to convince others of my dignity. I am learning to grieve the losses that sometimes, understandably, make me feel hopeless. I am learning that hopelessness can be both understandable and also not the only feeling I am having, or not the only feeling it’s possible for me to have. I am finding ways to comfort my feelings of hopelessness, which I can’t do when I’m fighting them. I am learning to acknowledge and respect my pain. To acknowledge and respect my anger about being in pain without taking that anger out on the body where I experience pain. To tend my pain while also tending the rest of my needs. I am even taking tentative steps towards befriending my pain. And every inch takes strength.
I really love this comment, and the last paragraph especially touched me a lot. I’ll be honest with you: I don’t even know if I’ve begun to touch the tip of the iceberg of my anger. I’m honestly terrified of it. I think that’s why I keep gravitating back toward this fighting framing, because if I just *sit* with it and *gently investigate* it, well, I don’t even know! That and the fact that I really have just spent my whole life projecting myself into fictional quests!
This. I spent years fighting, but this is the body I am in, the life I am living. But also not my ‘fault’ or something to be fixed.
This was also what made me switch off the show. I love your nuance between fantasies that are escapist AND generative or healing, as distinct from those that are fuelled by fear and stigma. You are such a generous story teller – thank you! 💜
This is the single best thing so have read on this site in the many years I’ve been a reader. As a disabled woman whose life changed overnight, this story is my own (biking and all). I cannot thank you enough, Heather.
Not on you, but I think I’m also dealing with frustration that it’s taking covid and ‘healthy’, ‘normal’ (useful, worthwhile, of some value to society) people experiencing the things I’ve been dealing with for most of my life for people to notice. For WFH and accommodations the disabled community has been getting told couldn’t be done to suddenly be possible. It isn’t new, it shouldn’t have taken this, our voices have been speaking about it, but I guess we weren’t worth listening to.
Thank you for this.