In Memory of Steven J. Taylor
“We will thrive if we keep alive what is distinctive about us as a community that combines scholarship and advocacy in the service of social justice for people marginalized by disability.” —Steve Taylor
Ten years ago, Professor Steven J. Taylor, Centennial Professor at Syracuse University, Director of the Center on Human Policy, and founder of the first U.S. academic program in Disability Studies, died after a lengthy illness. What might I share, in retrospect, about him and his passing, ten years later?
I could share a long list of accomplishments, mention his many former students, and so forth. For example, there is an extended interview with Steve on YouTube, recorded during the making of Valuing Lives, a documentary on the work of Dr. Wolf Wolfensberger, and in this interview, Steve makes important points about history, institutional abuses, and exposés, as well as his involvement in the Disability Rights movement during a crucial time in U. S. society, as many different civil rights movements were emerging at the same time—including Black Power, anti-war demonstrations, and the second wave of feminism. He certainly lauded his mentors, whom he called “the giants,” leaders and scholars at the time he began his academic career. In sharing what his mentors accomplished, Steve offered guidance to future scholars.
Steve’s unwavering humility and respect for Disabled people was demonstrated throughout his career—beginning with his dissertation concerning institutional attendants (Taylor, 1977), a work that not only exposed institutional abuse, but revealed the importance of what he was doing: “It struck me then that my research couldn’t just be scientific,” he said in one article. He asserted, “I couldn’t write a journal article, then forget it all. I had some kind of obligation to work on my findings—not in the particular institution but in the whole area of institutionalization” (Syracuse Record, 1975) and “…(a) researcher has an obligation to follow up on his findings” (Syracuse Herald Journal, 1976). Steve insisted that researchers should use their findings to serve as a blueprint to engage in reform. He and others at Syracuse University tied together action research, activism and advocacy, and community and cross-disability organizing and folded them into academia.
Steve had many strong and abiding relationships with his colleagues. Among these longstanding alliances was one with his frequent writing partner, Bob Bogdan, who was not only a peer, but a mentor who “…[taught] me his brand of sociology” (Taylor, 1977, n.p.). Both sociologists, Steve and Bob conducted qualitative research focused on people with “severe” disabilities; they published important papers about the sociology of disability (Bogdan and Taylor, 1987; Taylor and Bogdan, 1989) and the “social construction of humanness” (Bogdan and Taylor, 1989). With the publication of their text, Introduction to Qualitative Research Methods (Bogdan and Taylor, 1975), they became an early influence for using qualitative research to study inclusive education and Disability; this method also made it increasingly possible for Disabled people to tell their own stories and share their experiences and viewpoints in their own words. The 1975 text has since been revised three times, and Steve completed a nearly complete draft for the fourth edition before he died (the book was published a year later).
There are Steve’s classic works, the most cited being his commentary criticizing service systems, analyzing how flawed systems can create “traps” (where one might be “caught”) (Taylor, 1988). He argued that while these systems may have constraints, they should be examined contextually, both literally and historically, to provide an opportunity for revision, thereby informing people to look “beyond” any continuum. This theme emerged in some of Steve’s other writing (Taylor, 1995, 2001, 2006b).
There is Steve’s public service, both within and outside the academy. He was editor of Intellectual and Developmental Disabilities (IDD) from 1993 to 2011 (I assisted him in tracking manuscripts, sending reminders to reviewers, and distributing decision letters; his editorship was renewed at least five times), served as Institutional Review Board Chair from 2000-2006, sat on numerous promotion and tenure committees, served on the Chancellor’s Task Force on Disability, and much more.
There is also Steve’s leadership, including advising students, administering qualifying exams, and serving as dissertation committee chair or reader for many. I can’t count the number of support letters he wrote for former students. There were also the IDD decision letters, in which he provided rejected authors’ time and advice—a “gentle rejection” type of letter, composed in a thoughtful, scholarly way. And of course he conducted peer reviews of his own. I could go on.
Almost his entire academic life took place at Syracuse University, from when Steve was a graduate assistant in 1972 to when he became Centennial Professor in 2008. He was a consultant on a project at the University of Minnesota from 1976 to 1977, and taught at Cornell University from 1977 to 1979, returning to Syracuse University in 1979. He served in various roles until the time of his death, including as Director of the Center on Human Policy, beginning in 1983. In 1995, Steve founded the Disability Studies program at Syracuse, the first of its kind (Zubal-Ruggieri and Wiener, 2020); in the decades that followed, he offered advice to many people who sought to create programs of their own. Steve and I compiled a listing of North American Disability Studies programs (Taylor and Zubal-Ruggieri, 2004), which was maintained and updated until 2019 (efforts are underway to reboot and update this document).
While all of Steve’s research was important, there were studies that were incredibly important to him, personally. The long, in-depth study of the Dukes, a multigenerational family of individuals labeled “mentally retarded” demonstrated how “…the family in this study…constructed a life world in which disability is not stigmatizing or problematic for their identities” (Taylor, 2000, p. 59). He spent years as a participant observer, and the Duke family welcomed him into their homes not just as a social scientist but as a friend.
Steve’s final research project was a book-length study focused on conscience and religious objectors who served as institutional attendants during World War II (Taylor, 2009). This research served to remind us how these attendants’ efforts to expose abuse occurred long before Christmas in Purgatory was published (Blatt and Kaplan, 1966; Taylor, 2006a) and the Willowbrook exposé aired (Rivera, 1972). The study completed a full circle of Steve’s work, which began when Steve studied institutional attendants for his dissertation in the mid-1970s.
It is important to laud his numerous other contributions–courses taught, grants funded, awards received, testimony offered, presentations given, and so much more. There are many meaningful, shared personal and professional experiences I could recall when I think of Steve. I will always remember his genuineness (more often than not, Steve did not pander to the pressures of academia), quirky sense of humor, and casual demeanor (he was wearing shorts and flip flops when he met me for the first time), and availability (providing guidance when many needed it). For 28 years, we worked together seamlessly, creating reference lists, preparing grant proposals, and so on. The more I think of Steve and his contributions, I keep remembering all the other things he did that are immeasurable.
A book about Steve’s life and work, edited by former colleagues and students is currently in preparation. In this forthcoming volume, “Before it Had a Name”: The Influence of Steven J. Taylor on Disabled Lives and Disability Studies, invited contributors and editors will reflect upon Steve’s work in terms of their own Disability Studies scholarship—especially the relevance of his work in offering guidance to people living and working in a chaotic and ever-changing world.
Most memorable for me right now is how, toward the end of his life, Steve offered me a glimpse of what death with dignity can and should be. He was deferential, not overtly acknowledging the tragedy of his imminent loss. Someone mentioned (maybe it was Steve?) how one shouldn’t dwell on the dark side of death. Instead, one should affirm how death is simply a part of living. And Steve faced his waning life with aplomb. From my perspective, he had such a calm demeanor about his fate that my reaction was both shock and appreciation.
Toward the very end, Steve did his best to console those of us who worked closely with him. He repeatedly told us that he had a good life and he “was around” a lot longer than he expected. “I know what I’ve accomplished and what people think of me,” he told us, and his two children were the greatest of these accomplishments. He also treasured so many other people—his wife, other family and friends, and colleagues, including the staff at the Center on Human Policy.
Steve modified his level of interactions with everyone at the end. He was private in the management of his illness, but then again he was always private. That… Well, that was Steve. “You know me—no visitors or phone calls.” He didn’t want flowers or “get well soon” cards either. “‘Well wishes really aren’t necessary.”
I was loyal to him for many reasons, but mostly because he respected me and encouraged me to pursue numerous things that shaped who I am today. In my last email to him, I had to share this sentiment with him, even if he likely already knew: “I can’t tell you how much I appreciate your encouragement and support to pursue my own dreams and foster more of my own strengths.”
As his illness progressed, he did his best to assure us he was still breathing and to keep on keeping on: “I can assure [you] that I’m NDY [Not Dead Yet]. Carry on.” Then he eased us toward the inevitable; he told those of us close to him, “Be prepared—in all ways—ok?”
Should I mourn or celebrate? In this day and age, I may just need to do both.
Citations
Blatt, B., & Kaplan, F. (1966). Christmas in purgatory: A photographic essay on mental retardation. Boston: Allyn & Bacon.
Bogdan, R., & Taylor, S. J. (1975). Introduction to qualitative research methods: A phenomenological approach to the social sciences. New York: John Wiley.
Bogdan, R., & Taylor, S. J. (1987). Toward a sociology of acceptance: The other side of the study of deviance. Social Policy, 18(2), 34-39.
Bogdan, R., & Taylor, S. J. (1989). Relationships with severely disabled people: The social construction of humanness. Social Problems, 36(2), 135-148. DOI: http://dx.doi.org/10.2307/800804.
Finding Alternatives to Institutions: Policy Center Crusades for Human Rights. (1975, December 11). The Syracuse Record, 6(15), 1, 4-5.
Rivera, G. (1972). Willowbrook: The Last Great Disgrace. New York: ABC7 Eyewitness News.
Taylor, S. J. (1977). The custodians: Attendants and their work at state institutions for the mentally retarded [Order No. 7813349]. ProQuest Dissertations & Theses Global.
Taylor, S. J. (1987). Continuum traps. In S. J. Taylor, D. Biklen, & J. Knoll (Eds.), Community integration for people with severe disabilities. New York: Teachers College Press.
Taylor, S. J. (1988). Caught in the continuum: A critical analysis of the principle of the least restrictive environment. Journal of The Association for Persons with Severe Handicaps, 13(1), 45-53. DOI: https://doi.org/10.1177/154079698801300105.
Taylor, S. J. (1995). Living in the community: Beyond the continuum. In L. Nadel & D. Rosenthal (Eds.), Down syndrome: Living and learning in the community (pp. 249-255). New York: Wiley-Liss.
Taylor, S. J. (2001). The continuum and current controversies in the USA. Journal of Intellectual & Developmental Disability, 26(1), 15-33. DOI: https://doi.org/10.1080/13668250020032741.
Taylor, S. J. (2006, April). Christmas in Purgatory: A Retrospective Look [Perspectives]. Mental Retardation, 44(2), 145-149. DOI: https://doi.org/10.1352/0047-6765(2006)44[145:CIPARL]2.0.CO;2.
Taylor, S. J. (2006). Supporting adults to live in the community: Beyond the continuum. In S. M. Pueschel (Ed.), Adults with Down syndrome (pp. 173-182). Baltimore: Paul H. Brookes Publishing Co.
Taylor, S. J. (2009). Acts of Conscience: World War II, Mental Institutions, and Religious Objectors [Critical Disability Studies]. Syracuse NY: Syracuse University Press.
Taylor, S. J., & Bogdan, R. (1989). On accepting relationships between people with mental retardation and nondisabled people: Towards an understanding of acceptance. Disability, Handicap & Society, 4(1), 21-36. DOI: https://doi.org/10.1080/02674648966780021.
Zubal-Ruggieri, R. A., & Wiener, D. R. (2020, February). How Disability Studies Began at Syracuse University: A Brief History. Syracuse, NY: Office of Interdisciplinary Programs and Outreach, Syracuse University. Retrieved from: https://bbi.syr.edu/projects/oipo/blog/how-disability-studies-began-at-syracuse/.
Read poetry by Rachael A. Zubal-Ruggieri in this issue of Wordgathering.
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About the Author
Rachael A. Zubal-Ruggieri (she/her/hers, they/them/theirs) is a long-time employee at Syracuse University. She co-created (with Diane R. Wiener) “Cripping” the Comic Con, the first of its kind interdisciplinary and international symposium on disability and popular culture, previously held at SU. At conferences and as a guest lecturer for many years, Rachael has presented on the X-Men comic books, popular culture, and disability rights and identities from her perspective as a Neurodivergent person and as a Mad Queer Crip. Entries in their “Micro Mutant Postcard Project” have been published in Wordgathering: A Journal of Disability Poetry and Literature and Stone of Madness. Their most recent publications include two articles (co-authored with Diane R. Wiener) in the Journal of Literary & Cultural Disability Studies‘ Special Issue, “Cripping Graphic Medicine I: Negotiating Empathy and the Lived Experiences of Disability in and through Comics” (Volume 17, Issue 3).