At Mark's apartment in Mizue, Edogawa, on February 22, 2015. Mark is on the right and Nagase is on the left. Courtesy of Nagase

Bookman, Mark (1991-2022): Shingon Esoteric Buddhism and Disability Studies

(At Mark’s apartment in Mizue, Edogawa, on February 22, 2015. Mark is on the right and Nagase is on the left. Courtesy of Nagase.)

“Wow, you’re working on Shingon Esoteric Buddhism!” I first met Mark Bookman in 2014, when he was studying in Japan as a Fulbright Fellow. He told me about his research at Toyo University in Tokyo, and I was surprised and impressed. He also mentioned his strong desire to attend Koyasan University, but unfortunately had to give up on the idea due to the numerous barriers for wheelchair users there. Koyasan University is situated atop the sacred mountain, Koyasan, in a remote area that requires over 5 hours of train travel from Tokyo. Koyasan is a sacred place of Shingon esoteric Buddhism, established by Kukai (774-835), great Buddhist thinker, and philosopher.

While in Tokyo, Mark encountered difficulties in finding an accessible apartment. That’s when Kenny Fries, a disabled writer who had previously been a Fulbright Fellow in Japan, introduced me to him. Fries is the author of “In the Province of the Gods”, which is based on his experiences in Japan, including a visit to Koyasan, recounted in the chapter entitled “A Mountain of Skulls and Candlelit Graves”.

During our conversation, Mark mentioned that he had been influenced by Endo Shusaku’s novel “Silence” since he was younger. This classic novel, turned into a film three times, the last one by Martin Scorsese, revolves around a Jesuit missionary in sixteenth-century Japan and delves into the themes of god and belief during the suppression of Christianity in Japan.  

This may have been one of the reasons Mark decided to leave Judaism, much to his father’s disappointment. Mark first read the English translation of “Silence” at the age of 14 and later read the original Japanese version, according to his father. It fascinated me as well when I read it in my early teens.

I felt a connection with Mark as he had studied at Sophia University in Tokyo, my alma mater, which was established by Jesuit missionaries. I introduced Mark to Imamura Noboru, a leader in the independent living movement who heads the Center for Independent Living STEP Edogawa in Tokyo. Imamura, a national leader in disability rights, helped Mark find an accessible apartment in Mizue, Edogawa Ward, Tokyo. As a wheelchair user himself, Imamura understood the challenges of finding reasonably priced accessible housing. This experience was yet another reminder, for me, of the ongoing accessibility challenges.

(Imamura Noboru on a car. Courtesy of Imamura.)

When I organized a study seminar on religious studies and disability studies at the University of Tokyo in 2015, I invited a Buddhist monk who had just published a book on this topic. Mark joined us, looking very interested. Looking back, it was around this time when his interest began to shift from religious studies to disability studies, partly due to the inaccessibility of Buddhist temples.

He then fully immersed himself in disability studies within the context of Japan studies. In May 2021, he was awarded a PhD from the University of Pennsylvania’s Graduate School of East Asian Languages and Civilizations with a dissertation entitled “Politics And Prosthetics: 150 Years Of Disability In Japan”. A book based on this dissertation had been accepted for publication by Oxford University Press prior to his death, and Prof. Caroline Stevens, Monash University, and Dr. Frank Mondelli, University of Delaware, are kindly working towards its publication in 2025.

His progress since he started working on disability studies was truly remarkable. He vigorously published peer-reviewed academic papers and books. Even before obtaining his PhD, Mark’s presence was rapidly growing. He was nominated as the Japanese presenter for the East Asia Disability Studies Forum 2021, with the topic “COVID 19 and People with Disabilities in East Asia”. He presented “The Seriousness of Support Coordination Problems in Japan: COVID 19 and the History of Environment, Care, and Facilities” in his usual fluent Japanese.

In April 2021, Mark joined the Tokyo College of the University of Tokyo as a post-doctoral fellow, and he was delighted with his choice. This was his last post. At the time of his death, he was serving on the Board of Directors of the Society for Disability Studies in the United States and was also serving as the inaugural member of the International Committee of the Japan Society for Disability Studies (JSDS). I am the inaugural chair of this Committee and felt fortunate to have Mark as a member. Personally, I was hopeful that in the future, he would accept the role of chair of this Committee, serve on the board of JSDS, and as the president of JSDS. I was confident that all these would happen. In fact, Prof. Tateiwa Shinya, a giant in the fields of sociology and disability studies, as well as the former president of JSDS, who was leading the Institute of Ars Vivendi, Ritsumeikan University, in Kyoto, saw Mark as the scholar to whom he would entrust his future work at the university. That was why Mark was on his way to Kyoto.

Mark was serious about his work and always very helpful. He willingly assisted with the English translation of the JSDS “Statement on the Invasion of Ukraine by the Russian Federation and the Protection and Safety of Persons with Disabilities”. From April 2022, he was a visiting researcher — registered under the name “Bookman Mark”, following the East Asian and Japanese name order, at my Institute for Ars Vivendi at Ritsumeikan University. When I asked him to review a paper submitted to an English journal published by the Institute, he provided a thorough and high-quality review in less than 24 hours. This is just one example of his hard work and generosity.

The last time I met Mark in person was on October 6, 2022, at the Tokyo International Exchange Center in Odaiba, where he lived, when a film crew from the US came to shoot a documentary featuring Mark. I was very happy to see him again, as we had not been able to meet in person for quite some time due to the pandemic. I also had a chance to exchange a few words with his father, Dr. Paul Bookman, who was visiting Japan with his crew.

The following message from Mark arrived that evening:

I am so very appreciative of you coming all the way to Odaiba to interview for the documentary.

You’ve been, and are such an inspiration to me and you have helped me so much over the years. I’m truly, truly grateful. And I know that my father is as well. 

I hope to continue following your example and working to create a more accessible and inclusive society inside Japan and beyond.”

My response was “You have been my inspiration!!! 💛”  And this sentiment has only intensified, but has not changed.

The news of his death arrived on December 17, 2022, the day after he passed away. After the JSDS online board meeting, I checked my email and found that Prof. Carolyn Stevens in Australia had informed me of Mark’s sudden passing. I read that email several times, but Mark’s passing was incomprehensible to me. No, I just could not accept it. I had to talk to Carolyn in order to confirm it. It was a very painful conversation.

From that conversation, I learned that Paul would be arriving in Tokyo shortly. I also headed to the University of Tokyo Hospital where Mark’s body was located. There I was reunited with Paul and met Mark’s step-mother, Wasna, for the first time. I learned then that Mark was well aware that the average life expectancy after a transplant was about a dozen years or so. Hatakeyama Ryo, Mark’s main caregiver, arranged for his cremation at a funeral home in Yotsugi, Katsushika Ward. Mark in his coffin was dressed in white and looked like a virtuous monk.

“Mark: A Call to Action” was completed at the end of 2023. This documentary was directed and produced by Ron Small, a classmate of Paul from college days and an Emmy Award winner for his “I Danced for the Angel Of Death: The Dr. Edith Eva Eger Story”. Additional interviews were conducted after Mark’s sudden death. Then, in February 2024, the world premiere was held at three locations. Prof. Fukushima Satoshi of the Research Center for the Advanced Science and Technology of the University of Tokyo (UT) hosted the first one at the Komaba Campus of UT. Prof. Fukushima, the only deafblind professor in the world and a former Asia Pacific representative of the World Federation of the Deafblind, had Mark as a visiting researcher. Prof. David Slater hosted the second one at Sophia University. And Prof. Haneda Masashi of UT hosted the third one at the Hongo Campus of UT. All three were huge successes, well-attended by international and national scholars and activists as well as media and the film was well-received.  The Japan Times carried a big article about the film immediately before the premiers.

Through this film, I found it very interesting to see the Mark I did not know and the people around him: his interactions with other sick children on his hospital bed after his heart transplant when he was 10, his precocious attitude at elementary school, his encounter with Japanese anime, his relationship with his sister, bereavement with his own mother, interactions with his step-mother, and above all, his multifaceted relationship with his father, Paul, who is another central figure in the film.

At the UT Hongo premiere, Imamura greeted the audience after the screening. Along with the story of how he introduced his own accessible apartment, he said, “I was amazed at how energetic he was, how quickly he went around meeting leaders of the disability movement all over Japan, and when I looked on Facebook, he was connected to most of my friends in the disability field.” This is indicative of Mark’s phenomenal network.

In my mind, what Mark was trying to convey in this documentary is his strong belief that he was able to accomplish so much because of the community, including Paul, that believed in his potential, and that with the support of that kind of community, anyone can accomplish more. And Mark was practicing the provision of such support himself.

One concrete example is this GLIDE FUND (Global Leaders in International Disability Education Fund) launched by Mark and Paul before Mark’s death. The purpose of the fund is to provide financial support for international educational opportunities for students with disabilities with the aim of creating an inclusive society in which everyone can live independently. It is based on Mark’s desire to ensure that other people with disabilities do not have to experience the difficulties he experienced as a student with a disability, such as finding accessible housing.

Outside of this Fund, Mark’s legacy is already in motion: the Anthropology of Japan in Japan (AJJ) has established the Mark Bookman Prize (initiated by Prof. Tom Gill) with Esben Petersen (Ritsumeikan University and Nanzan University), and others being the first recipients in 2023. In March 2024, as part of the Yanai Initiative — a joint project between Waseda University and the University of California, Los Angeles for the transmission and dissemination of Japanese cultural studies, Japan Past and Present (JPP), a transnational information hub for Japanese cultural research and education, the project on Disability Studies in Japan is dedicated to Mark.

(February 28, 2024 at Koyasan University. Wasana is on the right and Paul is on the left. They are holding Mark’s ashes. Photo by Nagase.)

At the Komaba premiere, Prof. Fukushima said that what Mark was working on was “the truth about the meaning and mystery of our human existence in this universe”.  Prof. Gill describes Mark as “a true scholar, devoted to seeking out the truth — even if that truth might be discomforting or sometimes even painful.”

After the Tokyo premieres, I took Paul and Wasna to Koyasan.  Though I am not a religious person, I have been finding Koyasan as the most holy and spiritual place.  We also visited Koyasan University, where Mark once intended to study.  Then, really belatedly, I started reading about the Shingon Esoteric Buddhism and Kukai to find this sentence, “Kukai developed the worldview that all things in the finite world of reality are directly connected to the infinite world of truth”, by Prof. Matsunaga Yukei, former president of Koyasan University. Perhaps Mark was resonating with this view of the world.  I wish I had asked Mark if he was going to link this worldview with disability studies and if so how.  This is just another wish I have with Mark.

In my wild imagination, Mark is enjoying his eternal discussions with Kukai and Endo at Koyasan.

*This is partly based on the essay in Japanese by the author for the Japan Society for Disability Studies, 国際委員会エッセイ「障害学の風」 – 障害学会 (