Ada Palmer photographed on May 6, 2021. (Photo by Jason Smith)

I’d had my diagnosis for ten years before I realized I could use the word disability.

I’d been writing about disability for thirteen years before I realized it so was powerful.

2004: the year of first diagnosis.  I had the attack at 3 a.m. The pain came in slow cycles like a firefly, dull rising to a peak where I could barely keep from screaming, with vomiting at each climax, six to eight minutes apart. I crawled quietly down from my loft bed to avoid waking Lauren (my roommate and singing partner, then and now). So I lay down on the bathroom floor, waiting either for the pain to stop or dawn to peek under the door crack. Dawn won the race. When Lauren found me lying on the tile she chided me for not waking her—funny how hard it is in emergencies to think things through: If she were having this problem would I want her to wake me? Yes! Then wake her!!!  Pain makes sensible choices hard. With Lauren awake, the willpower to keep from screaming crumbled, just a couple yelps each time the cycle peaked, just before the vomiting, eight minutes in between, a regular cycle like a cuckoo clock. 

We had me in the ambulance by 8:30 a.m. That day, I was supposed to administer my first final exam—my first assistant teaching post as a grad student—and I remember fretting that the students’ grades could suffer if they were worried about me. I remember when the flavor of my vomit changed, suddenly acrid and bitter, burning differently, and I remember thinking: That’s gall! It’s from the small intestine! It’s really doing that thing from physiology class! As the morphine kicked in, I was thinking of Four Humors medicine and Shakespeare lines that mention bitter gall.  It took them a few hours to rule out appendicitis.  It took them a few months and another, worse attack to diagnose Crohn’s disease.  I remember, between the tests, the question, “does anyone in your family have Crohn’s disease?” coming up more frequently with time, though I didn’t yet know what it was. My family and I learned about it together, an autoimmune condition of the digestive tract that can take very different forms in different people, though we learned more from the internet than from the doctors. Nobody mentioned the word disability.

1989: fifteen years until first diagnosis. I was a beholder for Halloween—a classic Dungeons & Dragons monster, giant eyeball, tentacles; none of my second-grade classmates understood the costume. I had to clamber out of the big papier-mâché sphere to make it easier to run upstairs to get Dad’s prosthetic hand. Halloween was the only thing we used it for; we concealed it among the candy in the giant pumpkin bowl, so trick-or-treaters would see a severed hand and laugh or tell an Addams Family joke.  It was meticulously painted, subtle tints of veins under the skin, the wrinkles of the knuckles perfect.  Most of it was hollow rubber, like a stiffish glove, so what remained of his hand could slip inside—only the fingers were stiff, filled in with plastic to replace the living ones Dad lost in a pipe-making accident at his summer job when he was eighteen years old, and I was negative eight.  The little nubby remnants of his fingers were (and are) normal to me, his index finger longest, with a tiny bit of the second finger joint still there but so short that, when he bends it, it basically remains the same length.  I remember liking to hold that finger, just the right length for my little hand to wrap around, and I remember noticing when I’d grown so his finger was too short, and I could only close three fingers around it, my index finger closing over the stub.  We talked about how he took care of it, ChapStick or Vaseline on the finger ends daily, where the transplanted skin gets dry in winter, cracking like dry lips.  We talked about the accident—Dad described everyone being freaked out by how calm he was, that the injury didn’t hurt as much as you’d imagine, that in the ambulance he was thinking about how it would make it difficult to type (though he still types impressively with those little nubs!).  We talked about how his workman’s comp payment let him go to college and meet my Mom.  We never used the word disability.

Dad showing me a sassafras leaf; the shape of sassafras always reminds me of his hand, which is part of why I suggested it as the name for my singing group.

1990: fourteen years until first diagnosis. Mom was in the hospital.  I do remember visiting.  I remember Dad and me in a big, dim, concrete stairwell with dark orange painted walls, a memory which still makes me uncomfortable in orange-painted spaces, even though I love orange in general.  I remember low ceilings and dimmish yellow light, brown carpet maybe, and big odd vending machines with sandwiches and salads in them, and a cafeteria with trapezoidal trays and food—hard-boiled eggs?—but no glassware and only flimsy plastic spoons.  I know they had me talk to a social worker to see if I needed help coping, or family therapy.  The social worker asked if I understood what was happening to Mom.  I answered (Dad remembers clearly) that there were chemicals in Mom’s brain that were making it hard for her to think clearly and be happy.  The social worker was astounded; they had never met a kid so young who gave a science answer like that, but it was just like the documentary on PBS that my parents and I had watched about the brain, which talked about neurotransmitters, and depression, and addiction, and epilepsy, and other kinds of seizures, and all sorts of fascinating things, and I talked to the social worker about my favorite DNA documentary, and the Miracle of Life documentary about human reproduction that I’d watched with my parents on PBS—or that’s what I remember, but it isn’t very clear.  

My clearest memory is of my school’s music building, not the main third-grade classroom but a small one-room trailer mini-building with white siding and a willow tree.  It’s one of those memories that’s super sharp, a flash, like how you remember where you were when 9-11 happened or some other big news broke (bad news usually), except nothing is happening in the memory, I’m just approaching the music building thinking about Mom being in the hospital, and it’s so vivid with the willow tree.  Dad remembers me being really upset at one point when Mom was supposed to come home but then had to stay longer, but I don’t remember that, or when she came home, though I do remember meeting her psychiatrist, and learning about the science of Prozac and lithium, and ways to watch for if the same things started happening with me as I grew up.  We never used the word disability.

2004, summer: year of first diagnosis.  The second attack was a month later, also at 3 a.m.  I recognized the cycle this time, dull pain rising to the stab and scream and vomit, eight minutes between. It was the same spot—the spot, my spot—about a finger’s length below and to the right of my belly button, the spot where there’s been pain every day now for nearly twenty years, so constant that when I’m checking in for appointments and nurses ask, “Any pain today?” I have to remind myself to answer, “Yes,” since it’s easy to somehow think they only mean new pain.  That time I was visiting my parents for the summer break.  I remember, lying in the hospital, I figured out that if I sang, the breath control let me prevent the screams.  I like singing.  I remember my parents on the phone, not wanting to let them hear me making sounds of pain. Nobody used the word of disability.

2009: five years since first diagnosis.  My mother was excited on the phone. “President Obama is on TV talking to a young woman who has Crohn’s disease!”  I tuned in.  It was the first time we’d heard it mentioned outside doctor visits.  It was the run-up to passing the Affordable Care Act; the president was talking to a young Black woman who wanted to start her own business—a craft store I think?—but could only do it if there was a public healthcare option to cover her Crohn’s meds.  It made sense; a year before I’d tried to get a refill at an out-of-network pharmacy and been told a month’s supply cost $8,000, which is why I had to go cold turkey on the meds on one of my research trips, and had my third bad attack, though usually the pain was mild, quiet, like if you banged your finger in a door three days ago and it still ached. (Cue documentary voice in my head: chronic pain in the same part of the nervous system repeated over long periods can cause severe nerve damage or trauma, even if the pain itself is mild.)  I hadn’t thought much before about other people also having Crohn’s, about sharing experiences, community, reaching out.  About representation being powerful.  The voice-over analysis was cheerful, all about the economy, about how many new small businesses and careers and jobs the ACA could create.  The news clip never used the word disability.

2012: eight years since first diagnosis.  I was behind the Otakon convention center when Dad called.  Our group cosplay that year was Blackjack, but we only wore it Saturday, so I was in my Orochimaru costume—ninja gear and lots of toy snakes—leaving the con with Dad.  He prefaced it carefully, “Your mom and I are fine, but there’s sad news.”  My only female cousin, suicide.  By then we had discussed genetics and the extended family more, so I did know about her struggles with addiction, and how depression—like my Mom’s—affected other family members too.  Dad did answer when I asked him what method she’d used, but he was carefully brief.  I remember thinking her father and brothers would be very sad, remembering the last time I’d seen her at a family get-together in Hawaii to celebrate Grandma.  Dad asked three times whether I was okay. (Cue documentary voice: chronic pain in the same part of the nervous system repeated over long periods can cause severe nerve damage or trauma, even if the pain itself is mild.)  I don’t think we discussed my self-monitoring regimen, but I remember reviewing my list of steps there in the too-sunny gravel parking lot, the tools for checking in with myself that I’d learned from Mom’s psychiatrist and books and things, checking my energy level, whether I’d been cranky without reason, whether I’d missed things that affected mood (meals, sleep, movement).  I wasn’t scared.  It was more a reminder that watching for symptoms was still important.  It had been years since Mom’s hospitalizations, and I still had no signs of depression, but it’s just like looking both ways before crossing the street, years of success doesn’t mean one should stop.  I remember Dad and I discussed it a bit on my rest day after the con—we planned rest days by then, since we’d realized I always get a pain flare the last day of Otakon, as the intensity of preparation-stress relaxes into fun-stress which somehow triggers it.  I don’t think anyone in the family used the word disability.

The author, with her father

2013: nine years since first diagnosis.  We finally made it in to see the Vasari Corridor!  Jo Walton—met through F&SF cons—was staying with me in Florence on my research stay, and we’d been solidly alternating museum-writing-museum-writing-museum-writing.  Jo has used a cane since she was fifteen, after a pelvic injury following a car accident, so in addition to the art and history we were learning a lot about Florence’s accessibility, how complex the engineering could be to fit an elevator into a five-hundred-year-old palace, how sometimes requesting stairs-free access was an impossible nightmare, other times an easy joy, or a treat, as one was led through closed-off back parts of museums, where half-excavated columns or paintings mid-restoration lay hidden like a secret garden.  The long-closed Vasari Corridor was our white whale, built when the city transitioned from a republic unofficially controlled by the republican Medici pulling the strings, to a duchy monarchy which the later ducal Medici with the ducal throne held in an iron grip, and who—fearful of assassination attempts from their freshly-conquered people—built an elevated walkway all the way from the Palazzo Vecchio (old seat of government) through the Uffizi to their luxurious new home across the river in the Palazzo Pitti.  Many want to see it for the portrait collection stored on its walls, but for us it was the story, this fascinating transition from one kind of power to another, conquest and strife recorded in stone and mortar, an unofficial monument.  But as we walked the long gently sloping hall, the delicate descents and rises, we started noticing how easy it was to move through, for Jo with her cane especially, compared to most of Florence’s old stair-filled spaces.  Lots of Medici had chronic debilitating joint pain, usually referred to in the histories as gout.  We have lots of accounts, of Cosimo il Vecchio needing servants to carry him through his own home, of Piero asking if others could come to him so he wouldn’t need to climb the huge terrible stairs in the Palazzo Vecchio, one letter describing Piero and Lorenzo lying side-by-side in bed conducting business, both of them in too much pain to stand.  Cosimo used to habitually yell as servants carried him toward doorways, and when they asked him why, he said that if he waited to yell until after they slammed his head into the stone doorframe it would be too late.  As the tour paused to talk about another famous portraitist, we almost didn’t need to say it to each other: it’s a giant ramp.  The whole Vasari Corridor.  All its staircases were even extra-shallow-step staircases, the kind that horses can ride up. 

The Vatican also has indoor stairs like that, so one could ride on horseback through the long, long hallways of the palace if one wanted to, which feels decadent, but remember that a horse, in the period, sometimes served as a wheelchair.  The Vatican is a palace designed for princes who will always be elected as gray-haired old men, and filled with little differences in design details (in stairs, in doors, in seats, in slopes) that, in my visits there (especially with Jo) stood out—the Renaissance’s version of accessible design.  As others in the tour group marveled at paintings we marveled at railings and lintels and careful turns.  That night we combed through books and articles to see if any scholarship on the Vasari Corridor used the word disability.

2014: ten years since first diagnosis. I was on a train with Jo, her +1 on the book tour for the release of My Real Children.  There are so many fantabulous bookstores scattered through America, and so many long stretches of little towns and mile on mile of corn.  We were in the dining car—they seat people four to a table so we always got to meet two strangers with each meal, all kinds of different fascinating people that one meets on trains: retired doctors, single moms, farming families, Mennonites, eloping teens, train buffs, vacationing cops, and always lots of travelers from Europe or Asia or other places where train travel is default, who don’t realize that in the US it’s so rare.  This time it was two Japanese students.  The allergy conversation with the waiter had to come first—by this point Jo and I had a rhythm where I would explain—bell peppers, paprika, capsicum, red pepper but not black—it’s easier to explain someone else’s, less exhausting since you’ve only had to do it a few dozen times not every single day forever.  (Cue documentary voice: chronic pain in the same part of the nervous system repeated over long periods can cause severe nerve damage or trauma, even if the pain itself is mild. Fear, frustration, and social frictions are also, neurologically speaking, forms of pain.)  

I was doing it in the hotels and venues too—Is there an entrance without stairs? We asked for an accessible room, why didn’t you give us one?  No, Jo can’t stand for her reading, she needs a chair—so I was learning, hotel by strange hotel, how to push, and ask for what Jo needed, and how often those stairs-free entrances and accessible rooms were helpful for me too.  The little pre-made train salads arrived, iceberg with one pale cherry tomato and a comb-over of shredded carrot; Jo instantly took mine and started picking out the carrot (my allergy), so much easier to do for someone else. Time for the train-table small talk, our new Japanese friends asking, “How do you know each other?”—everyone asked that, code for not understanding why two adult women were traveling together (Are you related? Are you lesbians?). For once it was easy, “Jo wa sempai desu!” my inept anime Japanese supplying the perfect noun, sempai, slightly older mentor-ish person who started doing whatever you do before you, an elder classmate in school, and elder employee in the workplace, an established novelist showing me so much as I prepared for my own first novel to debut.  I didn’t yet think about her as also a sempai for disability.

2015: eleven years since first diagnosis. I was at Capricon, in Chicago, in a very cold hotel.  I was excited to meet the newly-local nerd community now that my new job (impossible! miraculous!) was at the University of Chicago.  The lobby had a fireplace perfect for huddling close, and a bar with blue and colored lighting, and I met some awesome recent Viable Paradise alums.  The air conditioning was so over-the-top, my teeth chattered when I took off my jacket to put on another layer under it. The pain flare started around 11 a.m., the too-familiar spot, not what I call an attack, no screams or vomiting, but the pain was acute and constant, and I was leaning heavily on chairs and walls as I moved through the lobby.  

I need the bathroom often in that state, the tension in the muscles around the bladder, like menstruation cramps.  The bathroom entryway had black marble walls, the cold stone painful to the touch as I leaned on it to propel myself along.  I passed by the disability accessible stall as always, since it’s important to leave that free for disabled people to use.  I chuckled, remembering that when I was little, I’d made up a supervillain who was in a wheelchair and turned evil from bitterness at abled people constantly taking the accessible bathroom stall, and made maniacal booby-traps to put in bathroom stalls to take revenge.  But, I thought as I entered the first regular stall, those bars on the walls would sure be helpful getting on and off the toilet seat right now, like in all those accessible hotel rooms.  Three, two, one, Wait!  Those bars are for me!  I am the person who needs the accessible stall!  Am I allowed to use it?  The stuff that’s meant for disability?

2016, summer: twelve years since first diagnosis.  Jo and I were both writing-track guests at a big gaming con, our first one, huge compared to SF cons, colorful and swarming like Otakon or Anime Boston.  Exploring the treasures in the games showroom was like waltzing through Candyland, but it was huge and tiring, far from our panels, and food was outside, mostly carts with few places to sit.  The con-provided hotel room was very, very far from the convention.  They hadn’t given us an accessible room. It was the first time a con had refused when we asked—they said they got a lot of people trying to cheat and game the system, claiming disability to get coveted rooms, so they required formal US government disability certification, which Jo didn’t have—not just because she’s Canadian, but also because the process is long and humiliating, and painful, as doctors poke and prod.  No one had ever suggested I get certified, though now on bad days I was using a cane.  Since both of us could do our work (writing, teaching, mostly self-scheduled tasks) sitting down, most of what disability certification gets you didn’t apply to our situations. So, it always seemed too grueling to go through for just moments like this.  

Dinner, back to the same expensive Japanese restaurant.  It was costing $100 a day more than we would have liked to spend on food, but there was nowhere else in reasonable walking distance that had chairs—this weekend’s iteration of what some call “crip tax,” spending more on many ordinary things because the only ones that work with one’s disability are more expensive, another of the rarely-discussed sides of disability.

2016: run-up to the Kansas City Worldcon.  Friends were staying with us for some days of fun before the con: feasting, cooking, board games, singing, lakefront walks, guitars.  Several present had chronic illnesses, and on one break from the larger gathering a friend and I sat down one-on-one in our little corner laundry-and-gym room. I remember the little backless weight bench. We discussed meds, how we organize them, my trick of putting a dozen prescription bottles in a cookie tin of just the right height so the bottles fill it, putting one day’s meds in each because there are too many to fit in commercial pill sorters. We talked about my pain, their pain, our different tests and doctor’s visits (I hate the kind of MRI where you go in head first!). The friend talked about a rough year getting rougher, the slice of each day taken up by their escalating condition.  I opened my mouth to say: Yeah, you have a really serious condition, mine’s nothing compared, when the friend said, “But, of course, my condition’s mild, not a really serious one like yours.”  I felt my eyes go wide.  I thought about how often I lay in bed or crawled around the house on pain days being angry at myself for not being able to push through it, that it wasn’t serious, even though (I’m very lucky!) no one had ever said that to me except me.  I hadn’t realized that it’s possible (and common!) to have impostor syndrome about having a “real” disability.

2017, spring: just under thirteen years since first diagnosis.  It was the class before the one I’d have to miss for surgery.  I remember walking down the beige-tiled hallway, thinking about the good reviews of my first academic book, that I was in a pretty solid position for tenure, that if word of health stuff caused something nasty, I knew the steps to take.  No one on campus knew.  At my first job at Texas A&M I’d collapsed once in the middle of administering a final exam (those poor alarmed students!), but even the colleague who drove me home still thought it was a one-off.  In Chicago, no one.  But this time I wanted to be honest.  Entering, with the rows of seated students amphitheatering up around me, I took up the whiteboard marker: Crohn’s Disease, Chronic Pain, Diagnostic Laparoscopy.  I explained that I had chronic pain that Crohn’s alone couldn’t explain, that the procedure was to check other possible causes.  I told them that for fifteen minutes I’d answer any questions they had about chronic illness, disability, etc.  The burst of hands was dense, like daffodils first breaking through the mulch in spring.  They asked about how chronic pain works medically, about how it affected my work, about how to be a good ally.  I talked about kinds of support I got from family, housemates, friends, about invisible vs. visible disability, how both get stigmatized but differently, about mental health as a form of invisible disability just as real as mine, and extremely common in our community, but stigmatized in yet another way. More daffodils, more hands: they asked about my choice to talk about it, about the language and terms I used, about how to find community and activism.  I talked about self-monitoring, about how friends and roommates helped monitor and support me. I talked about impostor syndrome, about how at least 75 percent of people at U Chicago have it, about how it’s increased by marginalization and erasure, by cultures of silence around things like disability, about figures on our syllabus—like Cosimo and Lorenzo de Medici—who were disabled but whose bios never use the word.  They asked about intersectionality, how disability intersects with race, gender, sexual orientation etc., about their own experiences with chronic things mental and physical, their families’, their friends’, their own.  I talked about the medical phenomenon of trauma, how (cue documentary voice) chronic pain in the same part of the nervous system over long periods can cause nerve damage or trauma, even if the pain is emotional, from discrimination, microaggressions, internalized self-doubt, or seeing hate-filled voices on the news.  Fifteen minutes swelled to fill up our whole hour-and-a-half of class, and at the end the room was still bristling with daffodils, many students speaking up who hadn’t much before.  After class thirteen students from a class of fifty came to my office to talk more.  The surgery didn’t find anything helpful, but when I got back to campus there was a card the whole class had signed, questions kept coming, and the balance of the class stayed different, formerly quiet students speaking more—I’d never seen a change in a class so quick and powerful.  Three weeks later I went to my Department Head to tell him about my condition, and that I would be requesting accommodations for my disability.

2017, summer: just over thirteen years since first diagnosis. Helsinki Worldcon Saturday—the pain flare started about 1 p.m.  It wasn’t surprising—stress can trigger it, cons can trigger it, and being finalist for both Best Novel and the Astounding Award was a lot, plus doing the wonderful but grueling Masquerade concert, and the travel, and the cold convention center air.  I did have my folding cane—cheap, the one they had at Walgreens, not my style at all, blue flowers with a glow-in-the-dark handle of kind-of squidgy rubber, but, like those restroom stall bars, it helped me get up from chairs and toilets.  At the pre-Hugo reception I was half zoned out, fretting about whether people could tell I was moving strangely.  In the audience, sitting beside Earth’s Proudest Dad, I felt it getting worse.  I was good at breath control by then, controlling yelps and screams, but not at tears.  If I won and went up to the podium, everybody in the world (the F&SF world, my most important world) would see.  During the Best Editor and Best Artist parts my brain was doing that manic cycles thing, like a bicycle wheel whirling without a ground to partner with it: Should I not go up if I won? How long will it take to walk across from here? Should I ask Dad to go up instead?  I’d aspired to this so long.  Twitter was where my whirling wheel kept centering—so many Twitter friends, especially female-presenting ones, lived under ceaseless downpours of harassment, especially if there was any intersection (disability, race, queerness visible online), it’s why my Twitter face was so impersonal, photos of statues and gelato, history, not me.  The most dangerous sides of Crohn’s can be stress-triggered, so I was (am) a harasser’s dream, a woman who, if they shout, “I hate you! Die!” enough, my body might oblige.  Best Novelette, Best Novella. Dad was next to me, and big, and warm.  He could go up.  But then he’d know how bad it was. I’d aspired to this so long.  The tears were thick—I knew I couldn’t read my notes, my speech.  Everyone would know.  Wheels spinning; daffodils.  My students had been so warm, and telling them had been so good for all of us, so powerful.  

Best New Writer ... Ada Palmer.  It had happened.  I’d aspired to this so long. And my students had been, not just so supportive, but so excited that I’d talked to them about why I had to miss class. Applause, round and lovely as I stood up and started walking.  Then it thinned as I advanced so slowly, awkward straggles of applause.  It threw the rhythm off, my cane, slow, labored steps—for all the others the applause had seen people to the podium, but I was clearly going to take five times as long, and applauding someone moving with such pain and difficulty must have felt uncomfortable.  My remarks had to be ad hoc, and rather incoherent; I wish I’d had the wherewithal to be clearer—I have chronic pain and am having a flare right now—something like that—I fretted afterward that me saying that I couldn’t read my notes would make people think it was something wrong with my eyes.  I’m glad there’s a recording or I’d have no idea what I said: 

“Thank you very much. I have a speech here but I actually can’t see it. I can think of no higher honor than having a welcome like this to this community. This … we all work so hard on other worlds, on creating them, on reading them, and discussing them, and while we do so we’re also working equally hard on this world and making it the best world we possibly can. I have a list with me of people to thank, but I can’t read it. These tears are three quarters joy, but one quarter pain. This speech wasn’t supposed to be about invisible disability, but I’m afraid it really has to be now. I have been living with invisible disability for many years and … and there are very cruel people in the world for which reason I have been for more than ten years not public about this, and I’m terrified to be at this point, but at this point I have to. I also know that there are many, many more kind and warm and wonderful people in this world who are part of the team and being excellent people, so, if anyone out there is living with disability or loves someone who has, please never let that make you give up doing what you want or working towards making life more good or making the world a more fabulous place.”  

I remember Locus magazine described it as the most moving part of the ceremony.  I did remember to use the word disability.  

The next day, Michael and Lauren and I were singing my Viking music at the Masquerade half-time show—so intense and amazing, that huge room.  Backstage, staff came very carefully to me to say there had been a code-of-conduct violation, that they’d gathered up the copies and talked to the parties involved, and showed me an unofficial newsletter that had an article saying it was strange to see me limping with a cane at the ceremony when I’d been seen that morning running agilely through the halls arriving tardy to my panel with Brother Guy. I was so stage-dazed I wasn’t tracking well, but blurrily thought, Yeah, I can see why that would be confusing, not registering Oh, they’re denying my disability, accusing me of things.  It could easily have felt horrible and threatening and who knows what, but I was full of stage adrenaline, and the Helsinki staff were so careful and handled it so well.  But I did realize I needed to (no option anymore) post on my blog about my pain, my condition, the situation, how my mobility comes and goes.  If I didn’t, more weird things like that article could happen.  I chose the photo where I’m with Dad outside the Hugo Losers Party, with my bright blue jacket and my squidgy-handled cane—Dad’s injured hand is in his pocket, not visible, but I know.  So there it was on the web, forever, Google keywords Ada Palmer disability.

2018, spring: fourteen years since first diagnosis.  I was on my first disability panel—I wish I could remember if it was Boskone or Balticon or something in Chicago.  I felt awkward being invited to it, thinking, I don’t really write about disability.  I started out quiet, listening to the other authors on the panel talk about disability in their books, about blind superheroes, about wheelchairs, about narrators with mental illness flashbacks. As I listened and thought about it more I realized: Wait!  There’s Tully Mardi, who walks with crutches because of his bone and muscle problems from a decade on the Moon.  And there’s the set-sets’ prosthetic sensory equipment.  And there’s Cato Weeksbooth’s chronic depression.  And there’s Cornel MASON, who lost a foot traumatically, and has a new cloned-tissue foot but has a partly-psychosomatic limp from the trauma, based on my own “psychosomatic real limp” (as I call it) caused by my inturned foot, and usually my muscles hide it on their own, but when I’m exhausted or in pain then it comes out (I don’t remember the leg/foot brace or orthopedic baby shoes my parents describe me wearing as a child—they never called that disability either).  I hadn’t thought about those characters in my books as unusual, of crutches, limps, braces, depression, or prostheses as unusual ingredients in futuristic SF, they just seemed like normal parts of life.  A fellow panelist (activist) talked about how rarely disability appears in imagined futures, how often we see the expectation of “fixing” or “curing” everything—I’d never thought of that, with space being so dangerous, injuries and chronic conditions being so normal, new technologies so likely to work differently for different people.  Another panelist talked about how her narrator has flashbacks, discussing it as mental illness, and I thought about my narrator Mycroft Canner—his madness has lots of components, and some of them are definitely literary-trope madness, the kind of madness authors use to enable flashbacks and dramatic breakdowns, but other parts of it, like the hallucinations and the body language and verbal tics, are based on my research on World War I trauma, accounts from Craiglockhart shell shock hospital, and the hallucinations described in the diary autobiography of Vera Brittain—how interesting to consider the distinctions between depicting literary-trope madness and medically-realistic madness, how differently each intersects with disability representation.  By mid-way through the panel I thought: I guess I do write about disability?

2018, summer, Florence. Done with the morning’s writing time, time to visit Perche No!, the gelateria which is also my Italian sort-of family, since I’d lived on their block for a year while on a fellowship, and each year returned to eager welcomes when research took me to Florence, often bringing a newly-finished book to add to the little collection where they display books written by friends.  Many of Jo’s books are there too—Jo was with me, working on Or What You Will as I worked on Perhaps the Stars and some Lucretius articles, and my Ph.D. student John-Paul.  It was a pain day, so I had my blue-flowered, squishy-handled cane, invaluable on steps and wobbly cobbles.  I was telling Jo the plot of Our Town, since she’d never read or seen it, and we love discussing fictional metaphysics, so I was describing how the small town Americana setting of the first half skips to depicting the afterlife depicted in the second half, but an empty afterlife where all the ghosts can do is sit and think or visit moments in their pasts, but the idea that in the play visiting an ordinary day just makes ghosts sad seeing it wasted—Jo and I, while we agreed that visiting today from beyond the grave would be pretty fantastic.  I paused to fold up and hide my cane—I didn’t want my friends at the gelateria to see me in pain.  Jo’s cane doesn’t fold—a constant need.  My cane made my invisible disability optionally visible on good days, a complex kind of privilege, controlling for myself when people know, though on pain days hiding the cane does have a cost.  Jo didn’t say anything as I folded it away, but she understood; whenever she comes without me, saying I’m sick, they fret so much.  Gelato in hand (berry, watermelon, and yogurt for me, berry and crema for Jo), I started describing the “Fiasco” episode of This American Life with its hilarious story of a production of Our Town where the actor playing the brother suddenly vomited on stage in the middle of the Stage Manager’s big Act III speech, and so had to face an audience of staring faces and deliver the disastrous next line, “Aren’t they waitin’ for the eternal part in them to come out clear?”  There are only four chairs outside Perche No, but Jo’s cane was enough for people to give us two, without me showing my disability.

2018, Worldcon San Jose. I’d been asked to present the Astounding Award, as last year’s winner.  I had my cane, and Lauren helping me backstage.  A tech staffer came up to tell me that he had Crohn’s too, and had been deeply moved seeing me talk and blog about it, and my acceptance speech.  Big smiles, sharing disability.

2018, fall. I was talking to the King of France—my King of France, Steph Ban, a brilliant and enthusiastic History major who had just played King Charles VIII in my papal election simulation in class, and had been reading my Terra Ignota.  Shortly before her iteration of the class, I had rewritten King Charles to make disability more central—the details we have from texts about his “ugliness” and skeletal asymmetry, his difficulty having children, his sister Joan who was not only unable to bear children but visibly unable to bear children, in some way the sources confirmed was externally visible, but didn’t describe.  My new sheet invited the player to imagine his interiority, his anxiety about his new bride’s reaction to his body, his careful clothing choices, his anxiety about producing an heir, reflections on period ideas of Fate and Providence, how many then said outer ugliness was a sign of inner ugliness, disability as God’s wrath, how if he weren’t a king’s son, he would likely be a beggar.  Before casting, Steph had come to my office hours to talk about her interests in disability history, and disability activism as we connected about our conditions—me a cane user and chronic pain sufferer, her an autistic wheelchair user.  As casting approached I’d been both excited and nervous to ask if she would like to play a disability-focused character; I know the fine line between casting for interests and type casting can be hurtful.  She loved bringing Charles to life, and her final project, reflecting on how both Charles and Lorenzo de Medici might each communicate to their sons about their conditions, moved me to tears.  And now she was reading Terra Ignota, reflecting on the set-sets, how much she connected with seeing neurodivergence explored in future SF, a future where—instead of disability being “cured” or gone (erased), there were yet new ways people could be different, new ways people could be bigoted about it, new ways people could face and fight that bigotry with dignity and strength.  It made me excited to bring that more to light as I finished the final volume, to make the set-sets, and the crutches, and the wheelchairs, and the limps—already present in my outline—more visible.  She made writing disability feel powerful.

2019, February: fifteen years since first diagnosis.  I had to do John Locke.  Europe’s Intellectual Transformations was a new course (extra work) but one I loved, modeled on my favorite undergrad courses with Alan C. Kors, but starting earlier, Medieval through Renaissance to Enlightenment.  Hobbes Week had been a pleasure, my word-paintings of Europe trembling in the coils of Leviathan the Great, and Locke was the resolution, both to that and how we got to the modern concept of concepts, which had been bugging my students. Anselm of Canterbury’s ontological proof had made their brains feel like they’d been smashed out with a slice of lemon and wrapped around a large gold brick.  But Chicago’s bleak midwinter had bared its fangs this week—Tuesday I’d left for campus happily but the pain attack set in on the bus stop bench, so I’d had to give up, crawl home, and cancel class.  Today, careful bundling and an adhesive heat pack glued to my belly had not prevented the same, but I’d staggered my way to campus anyway (not wise—it would cost me three days in bed).  But I had to do John Locke! As I entered, moving with clear pain, the students’ faces were concerned but not surprised; I’d told the class about my condition the second week, when they’d already seen me standing confident at the head of the classroom like other professors, so the reveal that I was disabled would make them think about how invisible it can be, how many people (including mentors) have unseen disabilities.  Hiding the cane in Week 1 had been doable—in most occupations one couldn’t manage something like that, or spend three days in bed after a push like today, but while academia devours evenings and weekends, at least its tasks are largely doable from home. 

Chalkboard: ontology, epistemology, Hobbes the Beast of Malm— I paused.  “Can anyone spell Malmesbury?”  Smiles as I grinned—this was familiar by now; back in week two I’d answered the first “How do you spell [term]?” with “I don’t know, I was always last in spelling in my class, let’s look it up.”  I like to tell them that, despite doing a Ph.D. on it, I still constantly misspell Renaissance.  My willing show of imperfection doesn’t just spark smiles, it sparks more raised hands, willingness to ask, reducing fear of being seen asking “dumb questions.”  My spelling is disability too, mild dyslexia undiagnosed in childhood since, in the 1980s, no one suggested such an eager reader might have it, even if she was top-performing in most things but bottom of the class in spelling.  I love the smile each time I tell a student—Ph.D., professor, Harvard, novelist, but I still take five tries to spell bureaucracy.  It’s like when I tell them about the letter where Machiavelli frets about having no clean shirts, or Thomas Aquinas being really fat, or Lorenzo’s pain, Heloise’s menstruation, Francis Bacon’s blindness, Poggio going to England for the high pay, and Hobbes as an old man, exercising by going in his backyard to yell for an hour.  It gives role models bodies, problems, monthly expenses, moods, whether the role model is Hobbes or me.  It makes us people.  I could tell this Locke lecture was below my par, my brain only half working with the pain, but it was okay, and at least I was giving their impostor syndrome a good glimpse of yes, you can be at the front of the classroom (and on the syllabus), even with mundane human qualities like disability.

2019, Dublin Worldcon. Hilarious accessibility-gone-wrong as I presented the Astounding Award at the Hugo ceremonies, and laughter interrupted my speech about the history of science and genre fiction when the automated captions turned “dogmatism” into “dog magicians” and rendered my examples of epic fantasy as “Bored of the Rings and Cream of Thrown.” I laughed too, but thought how glad I was to be the first one this happened to, since I was so comfortable on convention stages after many years, and it would have been horrible if laughter like that had happened to a shyer newcomer.  And hopefully many tales of the hilarity would make future conventions be more careful with their captioning.  Fiasco at the Hugo Losers Party too, too many people for the venue, so the bus left a bunch of us stranded outside on wobbly cobblestones in the rain.  My pain was mild that night, my turn to shove to the front and tell the doorman there were disabled people here who need to sit—no they need to sit!—NO, THEY NEED TO SIT!!!!—until he made it happen.  I thought about all the people who’d helped me with chairs at the Helsinki Worldcon, and the Dublin team who’d done a great job with stage access—my turn this night to take point on team disability.

2019, fall.  Utopiales, my first French SF convention, full of great French bread, and literature, and Jo was with me sharing my history-geek enthusiasm about all the things named after Duchess Anne of Brittany.  I was on a panel on Leonardo da Vinci.  A man was surprised to hear me say that Leonardo was important in his time but not that important, that Renaissance people would be surprised that his is one of the most famous names.  He cited Leonardo’s famously high salary in Milan—doesn’t high pay prove society valued him?—and I said it was high but not as high as the court lute player, or the court astrologer, and wasn’t even a quarter of the salary of the court dwarf, so while high pay did indicate social value, we needed to look at the whole range of people who received high pay.  Afterward a fan in the audience with dwarfism approached to say he’d never seen historical dwarfism discussed that way before, as important and high-status, and we talked about the latest research on the diplomatic power men and women with dwarfism held, and how that gets erased.  We talked about how they erase the disability of others too, with the Medici, and King Charles VIII, and even Anne of Brittany with her club foot and childhood blindness, and how many key figures of the Enlightenment were all chronically ill by modern standards: Voltaire with chronic stress-triggered fevers, Rousseau neuroatypical with kidney and excretory problems too, and dear Diderot with digestive system trouble that would flare up into serious attacks after each period that he pushed extra-hard on work, just like my own (though their biographers never words like chronic illness or disability).  After the con Jo and I visited Paris, my little pilgrimage to the Parisian Pantheon, to tell Voltaire and Diderot and Rousseau that my novel based so closely on their work was out in French, and when I came around the corner to catch first sight of the Pantheon there was a rainbow.  They’d also just restored the Voltaire sculpture in the Louvre, the nude one where his body looks so frail and failing and imperfect, but his hand still holds the pen, and there’s light in his eyes that burns like starfire, and reminds me of how I aim to be when I’m stuck on the couch but grab my laptop (as he did) to write what I can despite the disability.

2019, start of winter.  Steph was reading the freshly-finished draft of book 4 (Perhaps the Stars).  I’d known (hoped) it would have lots of content she would love: the triumphs and strong voices of the set-sets she identified with, the finale’s look at neuroatypicalness, the wheelchair speech in chapter 22, my other wheelchair scenes.  She did love them, but pointed out a pattern: all my wheelchair scenes had people being pushed, never controlling the chair themselves.  It made me realize all my wheelchair experiences were parts of my pain or attacks, being wheeled at hospitals or through airports, moments when it was a relief to me to sit back and just let someone else’s strength take over, a wholly different experience from Steph as a full-time motorized wheelchair-user for whom controlling the chair herself was a vital empowerment.  As I went through tweaking the wheelchair scenes to have a diversity of wheelchairs, I thought about how, after sixteen years, I still had so much to learn about disability as a community, how many different kinds and experiences and perspectives there are.  I had consulted lots of different friends about specific passages: David M. Perry about being a guardian for neuroatypical family members, Irina Greenman about the Six-Hive Transit System’s accessibility policies and language, Elsa Sjunneson about using blindness as a metaphor for Aliens’ First Contact.  I thought about how many different disabled experiences there were, how inevitably there must be other disability things I was being clumsy about, hadn’t thought enough about yet, how exciting it was to be doing better in book 4 than books 1-3, how later I would do better than book 4.  What great tools I had by being tied into a community of disability.

2020, May: sixteen years since first diagnosis.  The world was on fire so many ways in 2020.  I was on the university’s committee for adapting teaching for COVID—I had reached out to the dean with the self-care and healthy work habits handout I’d made for our Ph.D. students based on my own self-care strategies, suggesting something like it for the whole campus, and they asked me to make it, realizing their committee was focused almost exclusively on (a) the virus and (b) online teaching, and not on the fact that we were also asking people to learn and study during a World Mental Health Epidemic.  It felt (I’ve seen others on disability Twitter comment on this too) like in this moment chronic illness felt like coming from an alternate reality, where I’d already had to develop the skills everyone else suddenly needed: how to live and work with constant aaaaaaagh, mastering the science of trauma, and self-care treatments to help one function and produce even as damage from pain meant my brain only working at 75 percent. Time to share.  I talked about the science, how to understand the damage, trauma, chronicness (cue documentary voice), how waking every day to find the world still up-side-down and on fire means nervous system suffers damage, affecting memory, concentration, sleep, second languages, memorization.  I talked about how the brain is an organ, how mental injury is real injury, that repetitive strain on the brain isn’t less legitimate than tennis elbow or carpel tunnel just because it affects neurons instead of tendons.  I talked about saving your best hours for your most important work, about thinking of self-care as a work task just as mandatory as finishing papers or doing reading, how self-care tasks are homework, work-work, real work too.  

The College asked me to develop something that could substitute for the hands-on labs that were impossible online, and I thought of those smiles and friends at Worldcon, and designed an online speculative resistance hopepunk RPG, where students could apply their class and lab skills to designing methods for better planetary custodianship, climate change mitigation, more equitable social systems for a new world, and ways to address problematic side of space colonization narratives in the light of the horrors of Earth colonialism (designed for students energized by Black Lives Matter).  It was exhausting, more-so when my health tanked in October, a flare just like those tiring final days of Otakons, except it didn’t stop, it just continued (sometimes we must accept a lower quality of life).  I tried to take my own advice and focus on self-care.  One of the biggest self-care tools was a little Discord community, with Jo and a bunch of other F&SF friends.  Several had read the draft of my not-yet-released Book 4, and they started using bits of it as COVID coping tools, quoting a key line “[Spoiler] made it through,” and making a channel where sometimes everyone would post to say if they were “Safe-and-well” based on a moment in the book when, to counter the morale-devouring torrent of bad news, the characters start also posting good news, just reports of days when people are okay.  It helped.  Knowing I’d made a thing that helped others, that helped.  On the worst days, a year into the slump, I had to leave the classroom for a quarter, emergency disability leave due to blood clots (another problem) which made me unable to sit up or stand without excruciating pain.  I felt so like a character my own hospital horror chapter, but even from bed I could still share methods, Twitter-chat with friends about Voltaire, Rousseau, Diderot and disability.

2020, June: seventeen years since first diagnosis.  I texted Dad: Can I call to talk about how your amputations healed?  I’m starting on my Viking book, and I need details.  It was a long, lovely conversation, how the new skin felt at different stages, color, texture, moisture-levels, kinds of pain, geeking out together over the Wikipedia page on Granulation Tissue, like when we watched documentaries together when I was small, The Miracle of Life. The history half of our conversation was fun too, how skin-grafting worked differently with Medieval tech.  I’d been planning these books forever, in love with Viking tales since I was tiny, and had asked our priest why there was a special Sunday school for Christian mythology and not Greek and Norse mythology.  But only in recent years had I started to see the pattern: Odin missing an eye, Tyr missing a hand, Thor with chronic headaches from the whetstone shard lodged in his skull, Hodr blind, Loki with facial scarring, Heimdall with missing teeth and possibly (“Heimdall’s hearing lies hidden under the bright, sacred tree Vöˆluspá· 27) deaf in one ear.  The Há·vamá·l has it too, verse 71: the lame man rides a horse, one without hands drives herds, the deaf can be ferocious in battle.  The myths mirror the people, so they’re all maimed, all of them, all adult Vikings were—nobody lived a life that rough through to adulthood without injuries at least as serious as Dad’s.  So many years of gleeful study—Dad first took me to see Icelandic books in the rare books library at Cornell when I was twelve—long before I learned to call the pattern by its real name: disability.  So many years planning the novels out (and meanwhile teaching, reading, hurting, writing, singing, talking, meeting students, friends, Jo, Worldcon, Steph), before I realized that part of my Viking story could be powerful.

2019, sixteen years since first diagnosis, looping back to that bleak midwinter in Chicago, heading home after John Locke.  They installed the bench!  My bench.  I rarely take selfies, but I took some, with my gray winter coat, bare February trees, overcast sky, but my smile looks so real for a selfie. And you can see my cane, and under me the ordinary wooden bus stop bench.  All that winter I’d been thinking about it, and the previous winter too, standing on the icy sidewalk, me and other cane-users taking turns leaning on the one two-inch-thick little tree which was the only thing to lean on.  It wasn’t my own collapses standing in the cold that made me start looking up the procedures to make them get a bench, it was the very old lady with the quad cane—watching her walk so slowly from the library the same time every day, such careful steps, crossing the street to the stop as slowly as I’d crossed to the Worldcon podium, and then standing for ten minutes or more on slick black ice.  Still easier asking for things for others than for me.  Just seeing people sitting on the bench made me feel (still makes me feel) like I’d done a piece of concrete good in the world.  It took two years of asking.  I thought of Steph’s door-opener button, installed a month before.  She’d known she’d be a history major when she started at the university, and when special collections had no door open button for wheelchair access she’d put in the request first quarter freshman year—they installed it a few months after she graduated.  I texted her a photo (she’d left campus) telling her that the librarians were so grateful to have it, for when they wheel through carts or carry loads of books.  Steph said she teared up at the photo.  It’s such a slow fight, the steps we push for often helping others after us, too late for us ourselves.  She’d done her senior thesis on the history of disability at our university.  Shortly after she finished, a diversity mural in an older building, featuring the oldest representation she had found of disability activists on campus, was scheduled to be painted over in a renovation, so she photographed and wrote about it, artifact transformed to history.  We talked about how such stories—my bench, her button, the mural, older stories about those who asked for ramps and elevators—could be collected and a display made in the Student Accessibility Services offices, to help students connect with their peer-predecessors, sharing the message—one of power—that they should be here, it is normal, we’re a team, and that the university (this place, this world) has always been a home for disability.