Content note: This piece centers an evolving journey with internalized ableism and accompanying feelings of virtue and shame, particularly around public transportation, driving, and accessibility. Readers can step back from this piece if it is too difficult to read right now.
One
I did not expect Northern Europe to make me more disabled than the United States and Mexico—more disabled and more ashamed.
In 2015, I began experiencing chronic nerve pain on my right side—hip and shoulder—which developed in response to a complex musculoskeletal condition. By 2019, I could not walk more than a few blocks or lift much with my right arm, and if I climbed too many stairs in a day, I would pay for it later. In addition to walking, I stopped being able to bike, swim, or hike. Some days just moving around the house or doing the dishes would activate agonizing pain. Over time, I stopped going to places where I couldn’t drive.
I live in Ann Arbor, Michigan where I have worked as an anthropology professor since 2006. For sixteen of those years, I rode my bike to campus, a capacity that felt so rare and precious in the US where cars dominate and public transportation is so inadequate. I got to feel so virtuous: I used so little fossil fuel! Now, pain made my virtue impossible. A few years into the pain, I applied for disability permits for campus parking. When I picked up my permit, I cried in sorrow and rage, furious at the loss of my bike rides. Eventually I came to feel gratitude for being able to drive to work and park in the spot just behind my office. No walking necessary.
After several years living with chronic pain, my life felt narrowed, but my abiding ableism meant that I couldn’t bring myself to use a wheelchair. In 2021 my partner, Melissa, suggested using a non-electric Razor scooter with pneumatic wheels to get around. When my scooter arrived and Melissa watched me practice up and down the street, she named her Spinster. Like a refracted fairy tale, Spinster was my long-lost maiden aunt, my fairy godmother, manless and sleek, bequeathing me with the gift of a new profession, spinning!
With Spinster, I could go for miles. She and I could even navigate hard packed dirt trails. At first, I was castigated for using her in museums and big stores like Ikea. No recreational devices allowed! I started carrying a doctor’s note. What helped more was when Melissa spray-painted Spinster white and covered her with disability stickers. By announcing herself as therapeutic, instead of recreational, most of the (underpaid) guardians of space let Spinster and me pass. Undoubtedly, being white and middle class figured into my permission to use such a nonstandard disability device.
Author and Spinster in a museum with a flat floor across from a bank of elevators. 2023. Photo credit: Aditya Bharadwaj.
Decades of activism have profoundly transformed the definition of disability. Disability rights activists have fought against locating disability as a pathology within individual bodies, replacing this medical model with a social/environmental model whereby all people are recognized as having different capacities and impairments. Disablement arises when the environment accommodates some of these capacities and impairments and not others. In other words, disability arises in relational interaction (Harpur and Stein 2022; Issues 2022). That meant that when the Metropolitan Museum of Art would not permit me to use my scooter, despite the doctor’s note and my pleading, I became disabled in that specific place and time. The museum staff would allow, and even provide, a non-electric wheelchair. But I didn’t feel capable of suddenly learning how to navigate a wheelchair, and again, my abiding ableism meant I couldn’t bring myself to use one. I slowly walked, what felt like miles, to the exhibit and spent the rest of the day in pain.
Disability studies has also helped us think better and harder about pain. While pain might accompany disability, scholars question the assumption that disability necessarily entails pain (Siebers 2008). And as with disability, pain doesn’t necessarily come from within individuals, but can be made through lack of infrastructural support (Holmes 2015) or from medical attempts to create normality in the non-normative (Clare 2017; Lehrer 2020). It’s likely that my own condition was exacerbated by how specialization, so endemic within US medical practice, impedes clinicians from treating us as the interconnected organisms we are. Because my physicians focused on specific body parts, I underwent an unnecessary hip replacement, a “cure” that fixed nothing and exacerbated my nerve pain tenfold.
Two
Before the pandemic, I frequently went back and forth to Mexico City for work and flew regularly within the United States to give talks and workshops. The pandemic arrived just as my nerve pain made getting to a plane gate too far, which meant that, for a time, the pandemic made my immobility less noteworthy. As travel restrictions lifted, I was fearful I was no longer who anthropologists are supposed to be—hypermobile, adaptable, independent, not having to question what about my “body/mind enabled my research” (Durban 2022).
Spinster partially reenabled me. Together we could smoothly manage my bag in airports, which tend to have flat floors, automatic doors, as well as working elevators. I was a gliding, many-pronged creature. (A cyborg, not goddess [Haraway 1991]). Once I checked my bag, I could speed to the gate without pain (Nelson, Shew, and Stevens 2019). Children looked on with admiration, and maybe even envy.
I was nervous about my return to Mexico City, though. I didn’t know how my movement in a very steep city would work with Spinster. But my first trip back in 2022 was euphoric: I could get around! First, I had to learn what I couldn’t do. I could no longer use the metro. Spinster was light enough for me to carry with my left arm on short flights of stairs. But the Mexico City Metro, built in the late 60s, is vast with endless staircases and not many working escalators, elevators, or ramps. This was a loss; Mexico City’s metro is a true marvel. It moves over five million people a day, with each station color-coded and designated by a symbol for those who can’t read.
I could, however, travel long distances with Uber, and Spinster and I could navigate huge swaths of central Mexico City. I had to be more vigilant about sidewalks than in Ann Arbor or in airports. Sometimes, parts of the pavement suddenly went missing, but Spinster rode well, and when the terrain was tricky people offered to pick up my scooter, or just did it without asking.
I got to experience even more of this kind of unspoken assistance at the June 2022 Pride Parade. Spinster and I spun down the massive boulevard of Reforma with ease. About two hours in, I got stuck with dozens of other celebrants up against a high wall, a cram of bodies in a cement cul-de-sac created by a temporary parade structure. People started jumping over the high wall. I didn’t think I could manage it. Then suddenly, three burly bears picked me and Spinster up, hoisting us over the wall and into the planter median below. We were free!
When I described to a friend how surprised I was that I could navigate Mexico City so well, she nodded. When she started using a stroller with her baby, she realized how so many people in Mexico City use wheels to get around, even though the city is not accessible by any means. Ambulantes (ambulatory salespeople) use carts to carry their goods, which helps them carry more than what they can strap to their backs. There are some ramps for them, but not many. Some people who can’t walk are strapped to wooden boards, using their hands and the help of other people to navigate (Dokumaci 2023). My friend’s comments helped me apprehend all the wheels in use, and then also how people with wheels were usually not alone. Within such a disabling terrain, they needed assistance, both from wheels and from each other.
Three
In the summer of 2023, I spent two and a half weeks in Oslo, the Netherlands, and Berlin. It was my first trip back to continental Europe since the pandemic. When my hosts directed me to take public transportation from the airport to the hotel, I didn’t think much about it. I was heading to well-resourced countries, so I imagined marvelous accessibility. When I travel for work in the US, my hosts pay for Ubers and taxis. Academia in the US tends to be better resourced compared to Europe, and of course, our public transportation is abysmal; in most US cities, there is no train to ask visitors to take.
At my first stop, Oslo, the train rolled in right inside the airport: sleek, silent, and impressive. When the doors opened, they revealed three ascending stairs. Clumsy and loud, I lugged bag, scooter, and self into the compartment, shoulder and hip protesting. I repeated this ridiculous display when I arrived in Oslo. Blinking and unslept in the radiant Nordic summer sun, I navigated my (once glorious) many-pronged self along the bumpy cobblestones, running into walls and people. No one offered to help. I made it to my hotel, which was self-check in—no humans to assist me. Entering the building was a struggle. I was barely able to keep the automatic door open to get my extend-o-self inside, making me feel old, creaky, and cranky. The pain mostly subsided by the next day, and, without my suitcase, Spinster and I could easily navigate Oslo on the abundant trams, trains, and buses.
When I flew to the Netherlands, an American friend, Ellen, offered to meet me at the airport and travel with me by train to her home in the Hague. Like so many people in the Netherlands, she and her partner don’t have a car. I declined. I would manage on my own. I told her I would meet her at the station near her house. At the airport, the train pulled up, a little noisier and less sleek than in Oslo. The doors opened and I immediately regretted not accepting Ellen’s offer. The train forced me to choose between going up six steps or down six steps. I did neither. Instead, I stood perched for over an hour on the tiny in-between landing, gripping my suitcase and Spinster to prevent them from falling down the stairs as people tried to maneuver around us. No one offered to help. When Ellen saw me at the station, awkwardly coming down the escalator with suitcase and scooter, she shook her head in exasperation.
Ellen came with me on the next leg of the journey on the same kind of up/down train I had taken the day before. When we transferred trains, a woman with a stroller asked Ellen for help. Ellen carried the front of the stroller down into the compartment, then carried my suitcase in as well. As we rode, Ellen told me how the pregnant women she knew who visited the Netherlands from Latin America and the US could not believe that no one offered them a seat. Now though, after years living in the Netherlands, she had learned that it is considered insulting to offer assistance. If people needed help, they asked, just like the woman with the stroller. Asking for help prevented her situational disablement (Harpur and Stein 2022). Not knowing these unspoken norms had enabled mine.
Later in Amsterdam, with my luggage at a hotel, moving about was easy like it had been in Oslo, the city mostly flat and the metro accessible when it was just Spinster and me. At the end of my stay, my host told me to take an Uber to the airport so I wouldn’t have to manage my suitcase and Spinster on the train. The Uber was shockingly expensive, a disincentive, where public transportation is so extensive.
My last stop was Berlin. When I got to the airport, the direct train into Berlin was out of service so my eight-wheeled self transferred to an extremely confusing station, going up and down multiple elevators trying to find the right train. At my stop, the elevator was broken and there were no escalators to the street. As I started to inch down the stairs, my suitcase and scooter launched into a slow-motion tumble, crashing loudly at the bottom. This was actually a relief: the daunting descent was done.
I got my bearings with my phone and learned I needed to cross the river to get to my hotel. Looming in front of me was a pedestrian bridge, with stairs so numerous and steep, it was practically Mt. Everest. I began to cry. Far down the river I could see another bridge, which likely had stairs as well. As I wondered what to do, a woman and man offered to help me. They hauled my suitcase up the stairs, joking that my dead grandmother must be inside. I felt ashamed for needing their help and ashamed for not traveling light. I wanted to retort that there was an oxygen tank inside my bag to shame them in return, my infrastructural disablement producing some hard emotions that I channeled outwards.
Despite pain that night, the next few days with Spinster were wonderful. Spinster and I could get everywhere on Berlin’s flat terrain. Each evening after dinner, we sped home in the cooling air, rushing by others in a blur on well-paved boulevards. When it was time to go, I told my host I had to take an Uber to the airport. My extendo-self wasn’t up for more broken elevators and mountains of stairs.
Four
I survived all of this, of course. It is not undue hardship to visit magnificent cities on someone else’s dime. What’s more, the trip pushed me to engage with the work of disability scholars and activists. My work as an anthropologist has always been comparative. Across several projects in Latin America, I have examined how different environments and infrastructures produce different ways of being a person (Roberts 2017; Roberts 2013). Through disability studies, I began to apprehend how these environments and infrastructures do or don’t provide the accessibility everyone needs, whether in the form of other people, sidewalks, ramps, stoplights, shoes, zoning laws, functioning musculoskeletal systems, or rules for cars to abide by (Titchkosky 2011). Compared to people in Mexico, many middle-class, able-bodied urban Americans, including me, live among “infrastructures of individualism,” the unseen endoskeleton of accessibility that allows a feeling of independence from other people (Roberts 2016). Those unseen infrastructures allowed me to feel like a virtuous, bike-riding individual all those years, without noticing all the assistance that facilitated my rides (Larkin 2013). Importantly, infrastructure can change, made more accessible through the work of disability activists (Hamraie 2017). For instance, in Mexico City there are now more sidewalk slopes to assist wheeled mobility, and the inaccessible up/down trains in the Netherlands are being replaced.
Accessibility is also made through how we are social (Friedner 2020). When I gave my talk in Oslo, I described how no one offered to help me navigate Spinster and my suitcase on Oslo’s streets. A scholar nodded in vigorous agreement, explaining how disability activists from the Global South have critiqued the US and European disability movements for their insistence on independence (Dimitrova and Mladenov 2023; Harpur and Stein 2022). I thought of Mexico City, where infrastructure does not always function, which results in people experiencing themselves more relationally: they need mutual assistance to get thorough the day (Anand, Gupta, and Appel 2018). I also thought about my own desire to feel self-sufficient. I had refused Ellen’s help, after all. This desired independent self had so much to do with how, in the US and Mexico, I have the economic capacity to bypass public transportation.
Last fall, I no longer needed Spinster. Over the previous two years, I had the means and time to work with a supremely skilled Feldenkrais practitioner. She gradually guided me in reorganizing how I move. Now, after eight years, I can walk a few miles mostly pain free. Stairs are still a work in progress. Not surprisingly, life can feel slow without Spinster. Two months after I parked her in my office “for good,” I had to get quickly across campus from class to a meeting. I hopped on Spinster, excited about the ride, but arrived huffing and exhausted. The muscles and skills I had developed with my Fairy God Spinster were gone.
What remains from my time with Spinster is a deeper sense of how in the US and Mexico my eight-wheeled interactions with private cars, elevators, automatic doors, and people made my life feel livable. This livability was profoundly different than how inaccessible infrastructure in Oslo, Amsterdam, and Berlin, coupled with my ignorance of social norms, disabled me, making my extendo-self ashamed for not being able to navigate public transport on my own. I did not want to feel like a gas-guzzling, Uber-riding American, so I judged people for not offering me help. In a viscerally unpleasant way, I experienced what I had been teaching for years, that different infrastructures can bring specific activities, interactions, intimacies, and emotions into being, such as shame (Velho 2021; Hartblay 2017; Mol 2002; Wilson 2016). And now, especially through ongoing learning from disability scholarship and activism, I can better imagine how this kind of shame might not have to come into being at all.
Acknowledgements
Abundant thanks to Sandra Rozental, Maka Suarez, Stephanie Grant, Ellen Mitchell, Rayna Rapp, and two kind reviewers for their generous comments that pushed me to think much harder about my own relationship to disability and Spinster, and to Allison Green for guiding my return to walking without pain. I am deeply grateful to Amy Kuritzky for encouraging me to develop this essay and shepherding it through multiple drafts with such incisive insight.
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