Intersectionalia Newsletter Interview

Dielle Lundberg:

Dielle J. Lundberg, MPH (she/her or ze/hir) is a PhD student at the University of Washington School of Public Health and completing a Graduate Certificate through the University of Washington Disability Studies Program. Ze is also a multi-media artist interested in the ways that art can foster connection, engagement, and health. Hir personal and professional mission is to dismantle structural ableism in public health and healthcare and "crip" health research, practice, and education from disabled, neurodivergent, and mad perspectives. Ze is also interested in the ways that disabled people across communities are reimagining health systems. Dielle is a disabled, neurodivergent, transfeminine person. She is a white settler and identifies with/within the queer, crip, and mad communities. Ze currently lives in Seattle, Washington on the unceded lands of the Coast Salish peoples past and present including all tribes and bands within the Duwamish, Puyallup, Suquamish, Tulalip, and Muckleshoot nations. Her website with more information is diellelundberg.com.

Dr. Jess Chen:

Jessica (Jess) A. Chen (she/her) is a 2nd-generation Taiwanese-American cisgender woman, a settler currently on the land of the Coast Salish people (specifically, the Duwamish, Muckleshoot, and Stillaguamish Tribes), and a person living with disability. She is a psychologist, health services researcher, therapist, academic coach, and writer. Dr. Chen holds the titles of assistant professor in the Department of Psychiatry & Behavioral Sciences at the University of Washington and Core Investigator in the Department of Veterans Affairs. Dr. Chen’s academic life is about advancing research in the structural determinants of mental health and behavioral healthcare, particularly in the arenas of trauma and substance use disorders. Beyond academia, Dr. Chen aspires to shape cultural understandings of trauma and individual and collective healing. Her website for more information is jessicachenphd.com.

Dielle Lundberg is the respondent to Dr. Bowleg’s questions 1 through 4 and Dr. Jess Chen is the respondent for her questions 5 through 8.

1. Why was it important to you and your co-authors to write this article?

The impetus for this article for me was that after completing my first semester of my PhD program in Fall 2022, I was extremely frustrated by the ways health researchers talk – or fail to talk – about disability. Ableism was rarely mentioned in the health services scholarship I was reading, and if it was, it was always at the interpersonal or internalized levels. This distressed me because I think both of these forms of ableism stem directly from structural ableism. For example, two recent studies – both by Dr. Carli Friedman and collaborators – have found that most health care professionals and disability support professionals have substantial disability-related biases, which obviously greatly informs how disabled people come to view themselves too. While we can focus on individuals, it seems to me very important to also examine how structural ableism is creating and upholding all this and to call everyone – regardless of where you have been or where you are at – into the collective work of dismantling this system. 

On a personal level, as a disabled, mad, and neurodivergent person, I feel like so much of my own journey has been unlearning the ways that health systems taught me I was abnormal, a problem, or broken and learning how to self-advocate and stand up for myself in health care settings. There have been many instances where I was not listened to in health care settings that harmed my health and reduced my autonomy, and I hear the same thing from people in the disabled community on an almost daily basis. Jess as my primary advisor at the University of Washington shared in a lot of these views and frustrations, and so this paper just sort of emerged from there.

2. I'm also curious about your decision to publish it in The Lancet Regional Health - Americas. Tell us the significance of that journal for this article/topic.

The journey of this article was that we started the article in December 2022 and originally submitted to Health Affairs in Spring 2023, as our envisioned audience was health services researchers. When they declined, we re-submitted to The Lancet - Public Health where they have recently published some articles focused on health equity for disabled people. It was reviewed there, and after we made the changes that were suggested, it was transferred to The Lancet Regional Health - Americas where it was reviewed again. At each juncture, we changed the article a fair amount. Our initial article was pretty narrowly focused. The conceptual framework came about because we were consistently asked for more examples of structural ableism. 

Overall, I’m happy with where the article found a home as I feel the reviewers offered insightful comments overall that strengthened the article and challenged us for example to engage with more scholarship from outside of the U.S. From what I have seen, The Lancet Regional Health - Americas is publishing a lot of excellent scholarship related to health equity, and we had a good experience publishing there.

3. What, if any, was one of the most challenging parts of writing this article?

The review process was really intense. We responded to 9 sets of reviewer comments between the different journals, and it involved re-writing the article multiple times. This was constructive but challenging. The general reaction to our article seemed to be - “important… hard though… can you do this more thoroughly?… but also we have to keep the length and reference count reasonable.” A related challenge is that structural ableism operates in similar but also distinct ways for various communities of disabled, chronically ill, deaf (e.g. structural audism), neurodivergent (e.g. structural neuroableism), and/or mad people (e.g. structural sanism). A similar sort of article as this one could be written for many specific communities – and hopefully will be.

On a personal level, finding a balance between staying true to my own voice while making the article accessible to the researchers and policy-makers who we most wanted to reach was hard to balance. Hopefully where we did not succeed or go deep enough, it presents opportunities for future scholarship. 

Humorously, one reviewer did begin their review by opining that our article read a bit like a manifesto. While we did not of course say this in the response document, I will reply here by opining that in my view, much of the public health and health services literature reads a bit like a manifesto in support of ableism. 

4. Now tell me about what the most enjoyable part of writing this article?

The most enjoyable part of writing this article for me was the new collaborators and mentors I met through it. I am someone who communicates much more easily in writing than verbally, and so it was really helpful for me to have a piece of writing that I could share with people to say, “Look – this is what we are thinking about right now! Can we discuss it?” Two folks I got to meet through this paper, who are doing a lot of critical research and advocacy to advance health equity for disabled and deaf people are Dr. Bonnielin Swenor – Director of the Johns Hopkins University Disability Health Research Center – and Dr. Poorna Kushalnagar – Director of the Center for Deaf Health Equity at Gallaudet University. I also joined the Disability Studies Graduate Certificate program at the University of Washington, which has given me a bit of a home at UW. It was also really cool to discuss this article over the last year in my (very active) group chat with my neurodivergent friends, as I think those conversations all brought us closer and helped us to develop stronger identities as neurodivergent people as well.

This was also an exciting time to publish this article, which we didn’t really expect when we started it. Dr. Swenor and Dr. Rupa Valdez wrote an important article about structural ableism in spring 2023, and this was followed by another article by Dr. Dimitri Christakis and Dr. Lisa Iezzoni this fall. Having both of those articles come out – along with the NIH’s recent designation of persons with disabilities as a “population with health disparities” – all highlights the fact that there is a growing reckoning occurring around structural ableism in public heath and health care. It was exciting to be writing this article at this time. It was also cool to be revising it while I attended the Intersectionality Training Institute Summer Intensive and have conversations with Jess and others there related to it.

5. There’s a growing literature on structural racism, and to a lesser extent, structural sexism, but I think it’s fair to say that your new article is one of the first to focus specifically on structural ableism.  What is structural ableism and why do Intersectionalia readers need to know about it?

In the article, we begin our description of structural ableism by naming it “a system of historical and contemporary policies, institutions, and societal norms and practices that devalue and disadvantage people who are disabled, neurodivergent, chronically ill, mad, and/ or living with mental illness and privilege people who are positioned as able-bodied and able-minded.” Our expanded definition and discussion of how structural ableism functions in public health and health care draws upon foundational work by disability justice leaders such as Mia Mingus, TL Lewis, Patty Berne, among others cited in the article. We hope that Intersectionalia readers read and cite these scholars, if they are not already familiar with them. 

We can’t talk about intersectionality without considering disability. Many ideas from the disability justice movement are foundational to analyses of structural racism or structural sexism, namely systems that assign value to people based on productivity or desirability. Similarly, as we point out in the article, policies and institutions that uphold ableism also bolster racism, sexism, and other-isms. I often refer back to Sonya Renee Taylor’s use of the term “body-based oppression” to think about all of the interconnected systems that create and perpetuate inequity based on our discomfort with human bodies. One of our supplemental reading lists (Supplementary Table 4) is tailor-made for Intersectionalia readers - Selected Literature on Intersectionality and Ableism.

6. What is your highest hope for this article you and your coauthors have written?  In other words, what would you like it to do/achieve?

Our highest hopes for our article are that (1) it provides an intellectual jolt to your day-to-day work, infusing your scholarship with new ideas and perspectives, and (2) it honors and uplifts the work that disability justice activists, writers, and researchers have been doing for decades. We hope that people read and cite the disability studies authors mentioned in our article and engage deeply with the ideas. If we get what we wish for, then my hope is that we continue to engage in an ever-evolving conversation about structural ableism and intersectionality that advances both fields of study.

7. Intersectionality, as you know well, is not just about identities.  It’s critically important that intersectionality scholars keep our sights on "intersectionality as critical praxis," that to quote Patricia Hill Collins, "... sheds light on the doing of social justice work". Thus, what are some practical implications of this new work for intervention, including at the structural level such as laws and policies?

There you go, calling out my ever-present existential question about scholarship and praxis - how can I, situated in academia, effect change in the material world, including at a structural level with laws and policies? Dielle and I have conversations about this with every new project, article, or grant that we write. Concretely, the article includes a Supplemental Table 2 (Selected Literature on Policies Related to Structural Ableism) that cites economic, social, health, and built and virtual environmental policies that could be modified, enacted, or dismantled to make for a less ableist society. I am personally interested in policy consulting and policy evaluation, so I see many possibilities here for intervening on existing policies and evaluating the impact of that intervention.

8. Other than, go read the article, what else would you like Intersectionalia readers to know about the issue of structural ableism as it relates to the intersectionality work that they're currently doing or planning to do?

Dielle put together an excellent Figure 2, “6 principles for studying structural ableism.” People trained at the Intersectionality Institute should find some of these ideas familiar. When Dielle and I discussed these principles and similar ideas for how we will conduct research together, we came back time and again to the self-reflection and self-/discipline-critique at the heart of the Intersectionality Summer Intensive. Principles #1 and #6 are about interrogating the ways in which the very work you do could be upholding the systems of oppression that you seek to dismantle. Principles #4 and #5 are all about intersectionality and power analysis - looking beyond identities. Principle #3 addresses cultural differences and hints at some questions that are at the heart of disability studies – what is disability actually? and to what extent is disability an experience that only exists in relation to capitalism and other contextual factors? Finally, principle #2 feels more specific to disability studies to me and is a very important point about resisting the biomedical model but also, more broadly, the positivist paradigm as discussed by Dr. Bowleg during the Summer Intensive.