By Alena Lentz
/ Released on January 25, 2024
As Johns Hopkins’ first director of disability, culture, and inclusion, Nathan R. Stenberg is tasked with developing a university-wide vision for disability.
“It’s incredibly awe-inspiring,” Stenberg said of her new role in the Johns Hopkins Office of Diversity and Inclusion, which she began last fall. “And it’s also nerve-wracking,” she added with a laugh.
Image caption: Nathan R. Stenberg outside Mason Hall on the Johns Hopkins University Homewood campus.
Image courtesy of Will Kirk/Johns Hopkins University
Stenberg brings years of personal and professional experience to the challenge. He comes from a low-income, single-parent family in rural Minnesota and is a first-generation college graduate with a developmental disability. He has spent much of his career advocating for the disability community through public speaking, policy work, research, consulting, and the performing arts. Additionally, he serves on the steering committee of the National Museum of Disability History and Culture and on the board of directors of the Pennhurst Memorial Preservation Alliance, a disability advocacy organization.
The Hub caught up with Stenberg to learn more about how his newly created role will drive meaningful change at Johns Hopkins.
What attracted you to Hopkins?
This position is not only a first for the university, but in many ways a first outside of Hopkins. Twenty-seven percent of Americans identify as people with disabilities. Unfortunately, there are not many opportunities for people with disabilities, especially in senior leadership roles. From my perspective, visibility for people with disabilities in leadership roles is key.
From grade school through my doctorate, I didn’t have any faculty or mentors who were openly disabled or anyone who I could say, “Oh, they’re going through the same thing I’m going through,” so that’s one of the reasons why mentorship is really important to me. I’m really excited to work with students, faculty, and staff with disabilities, not just to show our presence, but to move our community forward.
What challenges do you foresee in your role?
Getting us all on the same page is the ultimate challenge: How do we create a more unified, centralized vision for disability at Hopkins while still preserving the autonomy of each department? How do we do that in a collaborative way?
“I see myself as an organizer and collaborator. One thing I’ve learned throughout my life and professional life is that listening is important.”
Nathan R. Stenberg
Director of Disability, Culture and Inclusion
Generally speaking, it has been 30 years since disability rights became a topic of national discussion, but the disability community continues to be concerned about rights, accommodations, and non-discrimination. As someone who has experienced discrimination in the past, I am very grateful for the protections I have. Laws such as the Americans with Disabilities Act, the Developmental Disabilities Assistance and Bill of Rights Act, and the Individuals with Disabilities Education Act have given me the opportunity to receive an education. Without these laws, I would have been institutionalized. That said, it is essential to think about what happens next. For example, how do we overcome accommodations and discrimination?
How do you see your role in furthering the mission of the Office of Diversity and Inclusion?
I see myself as a convener and collaborator. One thing I’ve learned in my life and professional life is that listening is important. I’m proactively going out and meeting people in person, rather than being a faceless name in an email correspondence. I’m trying to understand not only this broader Hopkins community, but also get to know the amazing people who are already working to support disabilities on campus. Hopkins is a decentralized institution, which comes with both opportunities and challenges. What I’m doing is bringing people together, collaborating, and thinking about the processes that are in place. How can this office support the strong work that’s already being done and leverage that learning even more broadly?
What experience do you bring to this role?
Not only have I worn many hats, I have loved them. I guess that’s the joy of growing up in rural Minnesota. I worked as a farm laborer and landscaper, I picked up trash at the county fair, and I worked in various restaurants. But I also trained as a musician, sound engineer, and personal trainer. After I went to graduate school, I focused on public speaking and consulting work, taking advantage of my waiter and stage performance training. The shift made sense. I try to make my research more public through public speaking and, more recently, filmmaking. I thought no one would read my papers, so I figured out how to translate them for a wider audience. Before coming to Hopkins, I worked in the field of disability policy in Washington, DC. Specifically, I was thinking about what disability policy would look like beyond Home and Community-Based Services (HCBS), Section 504 of the Rehabilitation Act, the Americans with Disabilities Act, and other basic disability policies and laws.
What kind of research are you doing?
I am interested in policy, law, medical history, and critical disability studies, but my primary academic field is performance studies. Currently, my research focuses on Pennhurst State School and Hospital, a former state facility for people with disabilities in Pennsylvania. The facility closed after a lengthy legal battle that included two separate appeals to the U.S. Supreme Court. After Pennhurst closed in 1987 and the state accepted former inmates back into the community, the facility lay dormant and in disrepair for 20 years. In 2008, it was purchased by a private entity and transformed into a for-profit haunted house that employs primarily people with disabilities.
My main research question at Pennhurst is how this former institution became a performance venue that commodified violence for entertainment while paradoxically nurturing a community of the very people it sought to exclude. Pennhurst can inform us about contemporary politics of care. I discovered that historical and ongoing processes of institutionalization constructed and enforced legal, medical, political and social notions of disability, producing and continuing to produce identities that simultaneously dehumanize and support disabled people. Institutionalization is therefore not something that happened in a bygone era, but an ongoing social process. The Pennhurst haunted house highlights the ways in which a disability community uses performance to reinterpret and reclaim it.
What are some of the efforts Hopkins has already made to become more inclusive?
First, the fact that I created this position and that I am sitting here having this conversation with you all. That in itself is amazing. When I was applying for this job, I re-read the university’s diversity materials, such as JHU’s first and second roadmaps for diversity, equity, and inclusion. I realized that Hopkins had not really thought hard about how to make the disability community and other underserved groups feel valued here and acted in accordance with its values. Seeing the university self-critically and strongly proclaiming its support for various underserved communities and experiences was a strong motivator for me to work here. Hopkins shows it not just in words but in actions. That’s amazing. We can dream big. So let’s work together. Together, we can be a global leader in disability equity, innovation, and culture.