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Mark Bookman is a powerhouse. That's how this story was going to open. Mark Bookman is a powerhouse.
One word has changed. That word is “is.”
Mark Bookman was a powerhouse.
On Friday, December 16th, 2022, Mark R. Bookman, historian of disability politics and movements in Japan, international accessibility consultant, and post-doctoral researcher at the University of Tokyo, was found dead in his apartment at the age of 31. We’d known him for less than a year, and the breadth of a planet had floated between us for that whole duration, but the news still left us winded, for he was—and is—our friend.
He was many other things as well: a prolific and talented writer, a passionate advocate for intersectional collaboration, a dedicated teacher who knew the importance of passing on as much as possible as quickly as possible, a victim of a vanishingly rare disease, an American who called Japan his home.
He was a colleague and a mentor; a partner and a son; an autodidact and jack-of-all-trades, to the extent that his body permitted; a relentless work-o-haulic ever-conscious that his days were numbered and committed, to the end, to giving as much of himself as he could to the world.
He was well versed in Esoteric Buddhism and conscious of the ephemeral webs that link all living things. “Everyone’s affected by everyone else,” he reflected the first time we met him, early in 2022. “If I’m present in a space, then my presence has an impact on everyone there. And if I’m absent, then my absence has an impact, too.”
Mark’s absence will be felt in many spaces. His legacy will thrum across borders and disciplines. He was nothing if not generous with his energy and time, launching our friendship by letting us interview him for three hours despite his exhaustion. We’re honored to have been entrusted with his story. We’ve endeavored to present it well, to do it justice, for this is story that he labored to share.
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Mark’s life began 16 weeks ahead of schedule, before his body had a chance to fully form, in Bryn Mawr, Pennsylvania, 1991. “To put things in perspective,” he told us, “my dad was able to fit his wedding ring around my thigh. I was about the same length as his wristwatch. So…yeah. Very, very small.”
At first, his doctors believed he would “catch up” eventually, but by the time he was six years old, his muscular development “had begun to go the other way.” He was tentatively diagnosed with Glycogen Storage Disease Type IV, but this consensus didn’t hold for long, soon supplanted by one so rare, it didn’t have a name. They named it for him.
As of 2022, Mark was one of only six individuals in the world known to be living with Bookman Syndrome.
A few years later, when Mark was ten, the muscular degenerative condition advanced to his heart. In a series of tweets from November 7th, 2020, Mark recounted a formative memory: while they awaited his transplant at the Children’s Hospital of Philadelphia, his father reached out to some friends in the media, and shortly after, “Joe” came to visit.
“This was after his wife and daughter passed in a car accident,” wrote Mark.
Joe spent several hours talking about his experiences and helping my mom in particular as she watched me fade away on the brink of death. Joe told my folks that he would show us around D.C. when I recovered. He kept his promise. After I was out of the hospital and cleared for travel, Joe spent an entire day showing me and my family around the underground senatorial complex, introducing me to politicians and policy makers, including later presidential candidates (and presidents). I’ve still got the autographed photos with well wishes at home.
These tweets, posted not quite a year after Biden took office, conclude with an endorsement of the man who, though “not…perfect,” struck Mark as a “genuinely compassionate human being,” likely to “open up ‘possibilities’ for diverse Americans and individuals around the world.”
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To be frank, this anecdote nearly ended up on the cutting room floor. We’re not in the business of endorsing politicians, even on behalf of our subjects. In the end, though, we kept it, not as a statement, but instead as a sampling—a signature one—of so much of what Mark left behind: a digital fragment, captured in the internet’s amber, intensely personal at a glance, but not without an instrumental application. It’s a testament to what makes his story easy to outline and nearly impossible to properly tell.
Mark was a public figure. In addition to a TEDx talk, several media appearances, and citations by outlets including the Washington Post, the BBC, and the New York Times, he maintained an elegant, public-facing website and contributed often to open-source projects. At some point along the way, with the Sword of Damocles above him, he’d evidently made the calculation that to maximize his impact on the world, he’d have to harness the power of personal narrative.
What, we often wondered, were his raw experiences like before he carefully ordered them in service of his work? No doubt, there were things he kept hidden, painful memories pushed under the rug, sensitive moments tucked away, but while we caught occasional glimpses, we could never be sure what his armor concealed.
Perhaps, with time, we’d have become his confidantes. We like to think so. As it stands, he remains enigmatic: a public-facing yet, in some ways, very private man.
We’re not here to exhume what he left buried, but to tell his story with integrity, to tell it well, means acknowledging that some things remain untold.
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“As a little kid,” Mark told us, “I wasn’t really aware of my mortality, even with the regular trips to the hospital. I was just trying to be with my friends on the playground. But after the transplant, I found myself locked in my room, isolated from everyone.”
The immunosuppressants that prevented his body from attacking his new heart also left him vulnerable to every passing illness and infection. Nearly two decades before COVID-19, Mark spent two years in quarantine. “I had a lot of angst,” he recalled. “I wondered ‘Why me?’ pretty much every day. Eventually, I did what any 10-year-old would do: I picked up some books by Heidegger and Nietzsche and started reading.”
Mark, who’d been raised in the Jewish tradition, found solace in eclectic philosophies. Plato’s Symposium expanded his notions of what love could be and whom it could encompass, even as he watched his friends’ first forays into dating from the confines of his room. Isaac, the sacrificial Hebrew child, helped him come to terms with his own acute suffering’s arbitrary nature. And then there was Japanese Anime, which he binged to break up the Western philosophers until, eventually, his highbrow and popular interests converged.
“This was right around the time of the internet boom,” he remembered, “when Japan’s economy was going downhill, so a lot of it had a dystopian vibe, but I latched onto stories that concerned themselves with cyborgs, with explorations of what tech can do for us, with questions of the body. I started putting the pieces together until, pretty soon, I developed an obsession with Japan.”
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To move to a new country, as Mark did in 2018, is no small undertaking. To do so as a person with a disability is an exponentially greater challenge, more draining, more daring—but Mark made it happen.
His reasons for doing so had many dimensions. We know, for example, that he dearly loved Japan, despite the slew of barriers he encountered there. We know that his dealings with America’s predatory healthcare system, on which he was forced to depend, had left him fed up and exhausted. We know that he also depended on near-constant care from professional caregivers, which the Japanese government now guarantees, though the country was two million caregivers under capacity, by Mark’s estimation, in 2022. We know that in the States, his status as an educated, well-to-do White male was largely eclipsed by his disability, whereas his privilege went further overseas.
Finally, we know that he was dead set on doing as much as he could in the short time allotted, aware that any given day could be his last.
Perhaps it is no mystery, then, that he should’ve chosen to pick up and move to Japan, though few in his position would’ve done the same.
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Ten years before making his permanent move, in summer of 2008, Mark visited the island nation for the first time. “It’s funny,” he told us. “Originally, I wasn’t even trying to go there. I wanted to take guitar lessons that summer, but my dad threw a wet blanket on that. He said I could either go to summer school or get a parttime job, but guitar wasn’t one of my options. Man, I was mad! I decided, ‘You know what? I’m going as far away as I possibly can.’”
He applied for a government scholarship to study abroad without telling his parents, who didn’t find out until someone from the Japanese Ministry of Foreign Affairs called their home. “They weren’t too happy,” he recalled, “but in the end, they let me go.”
He’d recovered from the transplant by then and hadn’t yet transitioned to a wheelchair, so navigating Japan’s narrow streets, squeezing in and out of Karaoke clubs, and practicing Kendo were all options for him. He availed himself of every opportunity and fell head over heels for Japan.
Back in the States, he enrolled at Franklin and Marshall College, a small liberal arts school in rural Pennsylvania, to study philosophy. He also started using a wheelchair fulltime, a process he described as “psychologically draining.”
“I had to rethink every step of my day,” he recalled, “from when I got out of bed, to how I took showers, to how I got food. That was when I realized that my college wasn’t really accessible. There was an office of disability services, but it was…well. Where else would you put it but at the top of a flight of stairs?”
Going into his third year, Mark transferred to Villanova University, “right next door” to his family home. There, he enrolled in a Global Interdisciplinary Studies program. In 2012, he fulfilled the program’s study abroad requirement by returning to Japan.
This time, arrangements were made on his behalf by the US-based Council of International Education Exchange (CIEE). They located accessible housing, charted train routes, and recruited notetakers. “Looking back,” Mark reflected, “it was really incredible. None of that was required under Japanese law before 2016. At the time, I had no idea how privileged I really was.”
Yet this privilege only went so far. On campus, Mark received a great deal of support, but off campus, he found his path riddled with barriers. Single steps and narrow doorways now prevented him from reaching sites he’d visited in high school and participating in karaoke with his friends. “That,” he remembered, “was when I first began developing a disability consciousness.”
His self-perception was also shaped by a class he was taking on medieval Buddhist philosophy. In his words, “It was crazy. I showed up on day one, and there were, like, five people there, including the professor, who was both an ordained Buddhist monk and a Jesuit priest, and the first thing he did was slam a several-hundred-page treatise in Classical Chinese on my desk and say, ‘By the end of this semester, you’ll have read this.’ At that point, I was barely conversational in modern Japanese. I was like, ‘What?’”
Mark and his classmates spent the semester slogging through that volume page by page. It rewarded him by flinging open intellectual doors and turning Mark’s attention to the weblike phenomenon of human connection.
“We weren’t reading about disabled people from that period,” he said, “but at some point, I started thinking, like, ‘Wait a minute. We’re looking at how we influence each other, but if I can’t even get on the train because it’s too small for my wheelchair, then I can’t get to school. If I can’t get to school, then I can’t have this conversation. My classmates can’t learn from my experiences. And if, later on, I can’t get to the workplace, either, and can’t make myself heard, then nothing’s ever going to change.”
Back in the US the following fall, Mark threw himself into a graduate degree in Buddhist philosophy, but “believe it or not, finding resources on ninth-century Esoteric Buddhism in classical Japanese and Chinese, in the US, is actually kind of hard.” Faced with this new barrier, he applied for a Fulbright and returned to Japan for a third time in 2014.
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In 2022, the last and quite possibly the busiest year of Mark’s life, he set aside time to volunteer as Vice President of Fulbrighters with Disabilities (FwD), the global, virtual chapter of the Fulbright Association that Itto founded in 2021.
“The Fulbright is great when it comes to funding,” Mark observed, “but let’s take my experience, for example. Apparently, in 2014, I was the first person in a wheelchair ever to study abroad in Japan. There was no one to ask for advice, no institutional memory, nothing. The Fulbright was happy to throw money at me and give me whatever I asked for, but I had to know what to ask for. I pretty much had to design my whole program—my whole life, for that matter—all on my own. And I had no clue what I was doing.”
A few months before his death, Mark told Geghie Davis, the current president of FwD, to keep the chapter running no matter what. “If you have to,” he told her, “keep going without me. This chapter’s the support system we never had.”
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Perhaps he meant that he might soon become so busy, between teaching, finalizing his book, and filming his documentary, that he wouldn’t be able to give the chapter the attention it deserved.
This interpretation seems unlikely.
Perhaps he made this comment off-the-cuff, an arbitrary nod to the awareness, which he carried with him every minute of every hour of every day, of his body’s sheer, perpetual fragility.
Perhaps.
Or perhaps this remark was more pointed. Perhaps, even then, he’d experienced prescience, an intuition or a premonition, that he was nearing the end of his days.
Medically speaking, this should not have been possible. The heart transplant that saved his life had also left a ring of scars around his heart, innervated tissue devoid of sensation. If it weren’t for this scarring, Mark might’ve felt the early symptoms of a heart attack, in the form of chest pain, days or weeks before it struck. As it was, the cardiac event that claimed his life came without warning. One minute he was living. The next he was not. He cannot have known that this was coming.
Then again, there are other sensory modalities that don’t rely on nerves.
In September of 2022, Mark and his father sat across from one another in a Japanese hotel room, their first face-to-face meeting in years. The rocky relations from Mark’s adolescence were by this time a thing of the past, replaced by a dynamic characterized by love and care and mutual admiration, but the pandemic had kept them apart. Travel to and from Japan had been impossible, and Mark’s mobility had been further circumscribed by his susceptibility to pathogens and the unavailability, until late 2022, of vaccines. Since 2020, Mark had often gone weeks without leaving his room.
As a veteran of childhood quarantines, he wasn’t fazed, but this time, instead of reaching for Heidegger and Nietzsche, he took the opportunity to make arrangements for the filming of a documentary about himself, which would commence as soon as the film crew was able to enter the country and he received vaccination. His father would be featured in the film as well.
At last, after months of stasis, things ground into motion. The film crew landed in Japan. By day, they traveled the city, filming at the university campus, at sites Mark had frequented before the pandemic, and on public transportation. By night, he and his father stayed up late, making up for lost years.
“I just want you to know,” Mark reportedly he told his father during one of their late-night conversations, “that even if I were to die in my sleep tonight, I’ve lived the life that I wanted to live. I’m satisfied.”
“Me too, son,” his father told him. “I’ve gotten to watch my son grow into an amazing human being. I feel the same.”
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In 2014, Mark’s first move after getting the Fulbright was to reach out to the University of Koyasan, a private Buddhist institution founded as a monastic school for Shingon Buddhists in 1886 and re-chartered as a university 40 years later.
Unfortunately, it sits at the top of a mountain.
“I left Franklin and Marshall because the disability office was on the second floor, right,” Mark mused, “and…well. Clearly, I had really thought this through.
“I got an email from the monks who run the university,” he went on, “and they were like, ‘Would you like us to build you a house?’ Apparently, that was the only way they could accommodate me. And they were serious! It honestly felt a bit weird, though, so I decided to go ahead and study somewhere else instead.”
The flurry of applications Mark sent out brought nothing, at first, but rejections, many explicitly citing his disability. Two more years would pass before the Japanese government enshrined its Law for Elimination of Discrimination against Persons with Disabilities, and educational institutions were not yet concerned about the possibility of legal repercussions for denying applicants on the grounds of disability.
At the last minute, Mark managed to secure a place at Keio University in Tokyo, two weeks before his Fulbright began.
He spent the first three months of his 10-month residency hotel-hopping while searching for accessible housing. “I couldn’t just book a room anywhere,” he explained, “because only about 0.4% of all hotel rooms in Japan are accessible, and they’re always booked months in advance. I had to keep moving from one hotel to another, and I was limited to that 0.4%. It was a ridiculous time.”
Mark’s American wheelchair was substantially larger than its Japanese counterparts, and even the accessible apartment corridors and toilet stalls in Japan proved too small for him. “For whatever reason,” Mark reflected, “because of my particular body, and my needs, and the technologies I was using, finding a place that fit me turned out to be very, very hard.”
His research plan had to be modified. Originally, he’d planned to visit Buddhist temples, but these structures almost always have stairs. “They’re supposed to be elevated,” Mark explained, “kept away from impurity.” Unfortunately, that put them beyond his reach, too.
Historically, throughout much of East Asia, as in much of the rest of the world, disabilities have been associated with impurity and pollution. As Mark put it, “When we can’t control our own bodies, including our bodily excretions, our blood, sweat, urine, feces, and tears, then we have to be kept out of sacred spaces.”
Near the end of the first millennium CE, according to Mark, people with disabilities began to be regarded, not merely as impure beings, but as archetypal embodiments of impurity. “And then some people in the Buddhist tradition realized, ‘Well, wait a minute…the whole world’s impure,” Mark went on. “That’s the whole point of purification rituals, after all: to escape from that baseline impurity. But how do you know if those rituals are working? You’ve got to test them somehow. And how do you do that? Well, by using people with disabilities.”
Despite constituting an ostracized group in medieval China and Japan, people with disabilities took on an “incredibly significant ritual function” during this period, according to Mark, essentially rendering spiritual services to Buddhist populations. But this didn’t mean they were welcome at temples, except when fulfilling these needs.
“At a certain point,” Mark reflected, “I started asking myself why I cared so much about what medieval monks were thinking when I couldn’t even get into the temples they built. I realized that I’d been approaching my studies from a certain perspective, and it was time to shake things up.”
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In truth, no environment, whether physical or digital or metaphysical, was ever arranged with Mark Bookman in mind. Perhaps this contributed to Mark’s lifelong restlessness, which didn’t only manifest in physical travel, but in intellectual itineracy as well. Though grounded in philosophy, his academic inquiries had expanded into the historical realm, and now, running aground on the limits of history to speak to his situation, he turned first toward public policy and law, then toward sociology and anthropology, then toward popular culture and media studies, and then eventually circled back again to history and philosophy.
This whirlwind tour of disciplines, and the perspective he developed along the way, soon established Mark Bookman as one of the foremost authorities on Japanese disability movements, politics, and policies in the world.
In his monograph “Disability, Accessibility, and the Study of Religion in Japan: A Fieldwork Guide,” Mark reflects on the unlikely turn his research took when, unable to enter Buddhist temples, he spent his days sitting outside them instead. “While my friends were inclined to focus on the training they received in esoteric iconography from elite practitioners,” he writes,
I instead learned from brief talks with tourists and other kinds of lay observers. Indeed, when my friends and I later compared notes after our excursion, the results were startling: we had developed drastically different, yet equally valid, models for making sense of the field site based on our inclusion in spaces and practices, facilitated in part by our diverse physical capacities.
The following year, when he began his PhD at the University of Pennsylvania, Mark’s lifelong impulse to transform barriers into opportunities, highlighted in the passage above, manifested once again. In response to the environmental barriers that riddled the campus, he established the Accessibility Mapping Project (AMP). Billed as “a digital interface for mapping physical and social barriers on college campuses,” the AMP supplements static campus maps with crowdsourced data: text, images, and audio recordings of users’ embodied experiences.
“We understand ‘accessibility’ as a multivalent and intersectional quality that cannot be reduced to a single set of guidelines,” says the project’s webpage. In addition to traditional tags, such as the presence or absence of stairs, elevators, Braille signage, and accessible bathrooms, users are invited to record the presence or absence of gender-neutral restrooms, prayer rooms, and lactation spaces, productively expanding what the word “accessibility” connotes.
In private, too, Mark was committed to intersectional and cross-disability solidarity. “My girlfriend has acute anxiety,” he said. “Sometimes our disabilities make things harder. She can’t always be there to physically support me when she’s having an anxiety attack, and I can’t always be there to psychologically support her when I’m having a physical health breakdown.”
Mark and his girlfriend met “under bizarre circumstances,” in the Japanese Studies Program at the University of Pennsylvania, where he was pursuing his PhD and she her MA. She was Chinese and spoke little English. Mark was American and, though now capable of reading Classical Chinese texts, spoke no modern Chinese language. Yet they were the only two students in the program who were fluent in Japanese, and it was in this language that their friendship burgeoned into romance, though neither was a native speaker.
“That’s an interesting dynamic in and of itself,” Mark reflected, “and it’s only compounded by the fact that I’m physically disabled, and she has anxiety and ADHD. We have similar interests, we both work on gender and pop culture in Japan, but we tend to approach those questions from two very different angles. Which can be very empowering.”
By reading and critiquing one another’s work, each infused the other’s scholarship with their distinct perspectives, pushing one another to write more holistically while become more dynamic thinkers.
“On the personal side,” Mark went on, “we both know what it’s like to deal with barriers. We both know the frustration of not having the time and space and resources we need, or even a reason to think that what we’re dealing with can ever be resolved. Our conditions can sometimes cause friction, but we also understand each other. That empowers us in many ways.”
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If Mark rarely spoke in public of the challenges that people with invisible disabilities face, it wasn’t because he dismissed these frustrations as less than his own. It was because he remained, to the end of his life, well aware of the limits of empathy.
“When my clients ask me what they have to do to make things more accessible for everyone,” he said, “I tell them, ‘I don’t know. Go ask everyone. I can only tell you how to make things more accessible for me.”
Research had made Mark aware of the pitfalls of stepping onto others’ territory. In “Creating ‘Disability Publics’ in Post-War Japan (1937 – 1957),” published in the Journal of Japanese Studies, for instance, he “investigate[s] how blind elites, wounded veterans, American policy makers, and other diverse stakeholders helped define the concept of ‘disability’ in Japan during the postwar period.” This paper details how certain stakeholders spurred policy action, but it also underscores that the 1949 Law for the Welfare of Physically Disabled Persons addressed only the needs of its most high-octane powerbrokers, leaving other groups out in the cold.
Within the disability space, as within most social spaces, solidary rhetoric too often conceals hard-headed, tactical suppression of one set of voices by another. Individuals and groups compete for power, often assuming a zero-sum game, and while a rising tide may lift all boats, it also drowns those who cannot scramble into one.
Mark understood this.
He understood the trap of speaking on behalf of others, which can all too easily degrade, whether cynically or unwittingly, into speaking over others. As a conscientious, straight, white, male American living and working in Japan, he couldn’t help but understand these things. He did his best to thread the needle carefully, advocating for self-advocacy, collaboration, and decentralized and democratic governance wherever possible—and yet, his father told us when we met in 2023 to mourn his passing, he was himself poised to step into a role that was not obviously his.
In the months before Mark’s death, several well-respected Japanese professors, heavyweights of disability scholarship, had approached him and asked if he would like to be positioned as the heir apparent to the Japanese disability movement. He’d agreed.
Mark, who never reached his 32nd birthday, who woke at four a.m. and typed until his fingers cramped, who bore the mundane indignation of relying on two personal assistants to feed him, clothe him, even change his diapers, lived long just enough to see his sacrifices pay off. During his lifetime, his papers were cited by the very experts whom he’d idolized. He entered rooms that had, for most of history, been closed to those like him, and at the tables in those rooms, he ensured that actions were taken and policies passed that have benefited countless people, with and without disabilities: students, colleagues, Paralympic athletes, attendees at his lectures, readers, listeners, strangers on the University of Pennsylvania campus and the streets of Japan.
Yet even as these triumphs piled one atop another, there must’ve been some trepidation in Mark’s heart. With every passing milestone, he must’ve felt the pressure mounting, the pressure to live up to his highest ideals, to wield his privilege and power, which was growing by the day, for the benefit of those who had less access than himself, in a country that was not his own, all while knowing that any given breath might be his last.
He’d left the US because, as far as he could tell, the aughts and 2010s had been a period of stagnation in regard to disability, one that didn’t seem about to end. The ADA’s passage had, ironically, stolen the wind from the sails of the disability movement, infusing the American body politick with the false impression that little remained to be done and ushering in a decades-long malaise.
In Japan, by contrast, things were heating up. The archipelago’s population is among the fastest-aging in the world, and in 2000, this prompted the government to pass a law to make public transportation more accessible. This in turn put pressure on many other institutions to become more accessible since people with disabilities could now get to their doors and demand entry.
Or, in Mark’s words, “If you give a mouse a cookie, it’ll ask for a glass of milk.”
In 2011, an earthquake, a tsunami, and a nuclear meltdown rocked Japan in quick succession. This “triple disaster” drew public attention to the plight faced by people with disabilities, a disproportionate number of whom lost their lives in those catastrophes and their immediate aftermaths. This helped fuel the passage of the Law for Elimination of Discrimination against Persons with Disabilities in 2016.
This legislative accomplishment was further catalyzed by the impending specter of the Olympic and Paralympic games, to be hosted in Tokyo in 2020.
When Mark landed in Tokyo in 2018, he found Japan riddled with disabling environments and attitudes, as America had been, but unlike Americans, the Japanese were also aware that the world was watching and anxious to improve.
The sociopolitical landscape was ripe for change. The stage was set for someone with the special combination of spirit, humility, cleverness, and clout that Mark brought to the table.
“Making the Olympics accessible involved a lot of moving parts,” he recalled, “from the taxis to the hotels to the actual stadiums. There weren’t a lot of specialists with a sufficiently comprehensive knowledge base to guide the Japanese authorities through that process. So…I kind of became that person.”
Almost as soon as he landed, the Japanese government reached out to Mark and asked him to consult for the International Committee, the Ministry of Tourism, the Ministry of Education. Several large corporations soon followed suit.
To keep up with his rapidly expanding portfolio, which still included academic and pedagogical duties, Mark drew on the work that he’d already done. The crowd-sourced data collection schema he’d developed for the Accessibility Mapping Project was implemented at the 2020 Olympic Games, enabling visitors from around the world to record their embodied experiences in Japan, and giving access to that data to laypeople and authorities alike.
“What we learned,” Mark said when we interviewed him, “is that, in many ways, Japan is doing really well.” By this point, we’d been talking for two and a half hours. It was morning in Japan, a long day stretched ahead of him, and Mark was already exhausted, but he grew more animated as he spoke, describing Japan’s global role: “Japanese robots built for aging populations are now going to Germany. That’s changing how Germans look at disability. Japanese accessibility trainers are going to Taiwan. Japanese toilets are going to Rwanda. We’re entering a whole new world of connectivity, which means opportunity, and Japan is right in the middle.”
Like the country he’d come to call home, Mark now found himself involved in conversations at a global scale. 2022 was an exhilarating year for Mark, with many highlights (listed in greater detail in this obituary on the Association for Asian Studies website), but no doubt, it was also a taxing one. Perhaps, when he told Geghie Davis to keep FwD afloat no matter what, it was because he sensed that even triumphs take their toll. Or perhaps these were simply the words of a man who’d known for years that his days would be numbered. Unable now to ask our friend, we’re left with only speculation.
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What we do know is that Mark Bookman died as he lived: fighting. He spent his days dealing with endless logistical barriers, but even these paled in comparison to the frustrations of physical dependency: the stigma, the shame, the embarrassment, the abject humiliation, and the haunting knowledge that if one of his caregivers failed to show up for a shift, he wouldn’t be able to dress, take a shower, eat breakfast, or even go to the toilet. And yet, in answer to the hand he’d been dealt, instead of sinking into sloth or bitterness, Mark leapt at every opportunity and deployed every available tool to craft a well-lived life: wit, charisma, national origin, humility, intelligence, linguistic aptitude, ambition, socioeconomic privilege, compassion, creativity, and courage. Boundless courage.
On the morning of Friday, December 16th, 2022, Mark woke up feeling somewhat ill. This wasn’t unusual. In addition to filming the documentary, he’d also just taken a new job and was about to move into a new apartment on the other side of town. He was exhausted.
His caregiver entered his apartment and helped him transfer from his bed into his wheelchair. “Can you hand me my laptop?” he asked.
It is here that grief, which is fundamentally a narcissistic enterprise, compels us to wonder whether it an email that Itto had sent to Mark the night before might’ve been the reason he was reaching for his laptop. The odds are vanishingly small. No doubt, there were many other emails in his inbox, many other friends and loved ones, not to mention mentors, students, colleagues, co-authors, and peers all vying for his attention. Still, we wonder. We can’t help but wonder.
As Mark’s caregiver reached for the laptop, he spoke his last words: “I’m not going to make it.” Then, as confidently and decisively as he’d done everything else in life, he died.
Mark’s presence made a difference. His absence makes a difference, too, not just in our lives, nor just in the lives of his family and loved ones, nor even just in the lives of his students and colleagues and mentors and peers, but also to everyone, all the food service workers and delivery drivers, architects and train conductors, engineers and professional caregivers, monks and scholars and strangers and not-yet-made friends who crossed, or might’ve someday crossed, his path.
Despite the countless barriers and borders that divide us, we are all connected. Mark Bookman understood this.
We miss the papers Mark hadn’t yet written. We miss the emails he hadn’t yet sent us. We miss the futures he would’ve been part of. We miss all the wry jokes he hadn’t yet made.
No, we never met in person. Yes, there was a planet’s breadth between us for the whole duration. But we miss you, Mark. We miss you.
We miss looking forward to meeting you someday.
We miss just knowing that you’re there.
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