I Was a Public Health PhD Student. How Many QALYs Did I Lose?
Essay One of Ten in the “Mad at/in Public Health Education” Essay Collection
Note: This essay was published on April 12, 2024.
Break-Ups Can Be Tough…
It’s hard to know where to start with all this, but here I am starting. I know I could spend months and months writing all this out, analyzing themes, and trying to organize it neatly into tables and figures for folks. But if I did that, I worry I might dilute something that I could say better here in a flash.
Welcome to the flash.
In public health research, there are many specific and prescriptive timelines guiding our existence — for peer review, funding, resolving disputes. These timelines are generally not aligned with a lot of disabled people’s ways of operating. Setting this aside though, these timelines are to some extent to be expected in public health, and we are told in many ways that we agree to them by entering this field. So — for the last year and a half, as a PhD student, I have given myself, as fully as possible, to these timelines.
They control a lot. They may control most everything in our field.
They do not, however, control my writing — or my sense of humor.
So I will start with this, an observation I have kept coming back to over and over again for the last few months. That is — when I first arrived on campus in Seattle to start my PhD program in health services, I could walk.
I could walk without my walking sticks.
Thank You for Your Call! Causal Inference Cannot Come to the Phone Right Now, But Can I Interest You in a Story?
About the walking…
I actually have a photo (and several eyewitnesses) who can confirm this. I’m not going to narrate my whole journey with disability and health right now, but in short, my mad and neurodivergent identities preceded my physical disability, which emerged during the pandemic.
I got COVID-19 in 2021 and didn’t ever really recover, but for a time, my symptoms of Long Covid and the related chronic fatigue and chronic pain oscillated a lot. I would move from weeks where it was hard to leave bed to weeks where I was able to walk around without my walking sticks.
When I arrived in Seattle, a few days before program orientation, I had a flare-up that stayed, this time quite consistently. It has not gone away, and I have been on a long journey now of accepting these changes to my body.
As a result, this photo has become a bit of a time capsule for me.
Recently, I have found myself going back to that photo a lot. There I am smiling awkwardly — hopeful and determined. And while I am still those things, I can’t help but think to myself: what the hell happened here?
I am smirking that my immediate inclination is to rephrase this as: “the overarching question for this essay is to analyze what the hell happened here?” However, in my first year and a half as a PhD student, one of the things I learned a lot about in my courses is that it is important to be careful when assigning causality between a lived experience and a health outcome. It requires robust quantitative causal modeling to do so, and I’m told that qualitative data — while valuable—cannot really be used for that.
Therefore, I hope it goes without saying that this project is not claiming a specific public health PhD program causes disability or causes disability to impact disabled students’ health to a far greater extent than it should. That would go well beyond what I am presenting here. Instead, in this essay collection, I hope to describe some of my own anecdotal experiences and use them as jumping off points for exploration of public health education.
The goal of these essays, as I shared in my post introducing this series, is to be generative and to contribute my small part to improving the experiences of mad, neurodivergent, and disabled students everywhere in these fields. That being said, I am never above offering a few more pointed critiques or interesting details here and there for the sake of reader engagement.
I Pledge Allegiance to Chronic Stress And Whatever It Does to My Mind and Body.
I try to be clear when writing about my main point, so here it is…
Chronic stress is disabling, and for disabled people, it is not something that we can just power through and overcome.
Pretty much every health care practitioner I have visited in the last year and a half has told me the thing I need to do to improve my walking is to reduce exposure to chronic stress. This was challenging as a PhD student.
I sometimes push that off as a joke, but this tension actually highlights what is at the core of the debate about whether and how disabled, mad, and neurodivergent students should exist in health education.
Right now, public health PhD programs do want disabled, neurodivergent, and mad students. They want us in part for the deep and valuable insights into health systems we offer, which can often be leveraged in rewarding ways. However, public health PhD programs — which serve to gate-keep many critical decision-making roles in health systems — still largely want disabled people to perform as nondisabled. And that is something many of us simply cannot do, and if we try to, it can be pretty disastrous for us.
I know the notion of addressing chronic stress in PhD programs can cause a range of reactions from folks who have made it through them such as:
- These programs are stressful to prepare you for the real world and job market (counterpoint: disabled people spend our whole lives figuring out how to navigate stress in the real world),
- I had a difficult time as a student but pushed through and succeeded (counterpoint: awesome, but your experience is not necessarily the same as mine and also the world and education is changing rapidly),
- I was able to overcome my disabilities and chronic illness. Let me help you do that too! (counterpoint: no thanks).
On the last point, I think the words of autistic activist Jim Sinclair from 1999 are particularly illustrative:
“I am usually a ‘person with a purple shirt,’ but I could also be a ‘person with a blue shirt’ one day, and a ‘person with a yellow shirt’ the next day, and I would still be the same person, because my clothing is not part of me. But autism is part of me. Autism is hard-wired into the ways my brain works. I am autistic because I cannot be separated from how my brain works.”
When I say that I am disabled, mad, and neurodivergent, my word choices are deliberate and reflect the complex reality that my body is in many ways not mine. It is politicized. My health and disability every day (whether I can walk, get out of bed, have enough energy to work) is shaped by things outside of my body and mind — often by choices from nondisabled entities around me. This is true for everyone to some extent — a notion explored in depth in disability studies — but is very impactful for disabled people. Who I am is wired in me but I am very often not given control of the wires.
It sucks and leads to a lot of anger for me, but that is for a separate essay.
So — when I talk about disability-related inclusion, I am almost always talking about smaller things that add up. In fact, I am almost always discussing: chronic stress, time burdens, and not being listened to.
I am not asking anyone to completely eliminate stress in public health PhD programs. I know that is not possible. What I am asking educators and administrators in public health to do is ask harder questions of yourself.
I will suggest just three questions here that are relevant to many settings:
- How do we reduce chronic stress that is caused by a rigid adherence to disciplinarily constructed “rigor” and “norms” that do not center the needs or experiences of mad, disabled, and neurodivergent folks and do not support us effectively in offering our unique contributions?
- Does asking about the number of disabled people in a community really tell a whole story, or is it also important to ask who has become disabled as a result of the community’s norms and secondarily how the health and wellness of disabled people in the community are fairing?
- Health systems have profoundly failed disabled people. As a result, many folks in public health are excited about me and disabled people like me using our time, energy, and skills to try to fix some of this huge mess. Given that excitement, why — when we tell you what needs to change to make our environments reasonably workable not only for us but our colleagues — is it so hard to listen, acknowledge, and respond?
I am very happy that the majority of individuals in my life are responsive to these types of questions and working to address them, with the realization that we cannot achieve everything at once. And as I frequently say, I will always choose to work privately and collaboratively as a first approach.
That Punchline About Quality Adjusted Life-Years!
Anyone who knows me in public health knows that I get easily annoyed by quality adjusted life-years (QALYs). They are harmful, and they also annoy me. I have written about them elsewhere and cited other elegant critiques. I have not really written before about why they are annoying to me though.
Here, I will describe QALYs (for readers unfamiliar with them) in a less refined way. QALYs are a measure of quality of life invented by public health researchers and are generated in large part by nondisabled people wildly guessing the quality of life of disabled people based on their socially constructed and generally problematic and inaccurate ideas of what disability is and how it impacts health (note: additional sampling and modeling is added to make them appear more legitimate).
Part of the reason QALYs annoy me so much has little to do actually with the QALY. For me, QALYs are something that health researchers decided were necessary and accurate for such a long time (despite decades now of disabled communities telling them they are inaccurate) that folks don’t even realize what they are saying when they throw around these numbers — like it is normal to reduce someone’s identity and health to a 0 to 1 score.
I believe the reason this is perceived as normal in public health research is very often because there is an assumption that people experiencing the disability (and who might be impacted by the discussion of a disability weight and/or QALY value in this format) are not in the room.
It is a smaller issue ultimately that speaks to me of painful volumes.
But the thing is… disabled people can play the QALY game too.
If you are going to wildly speculate about the impact of my brain and my body on my health and life and build your careers by plastering that information in journals and on the internet, I can just as readily speculate on how many QALYs I may have lost from my lived experiences resulting from my engagement with health systems and experiences you manufactured.
So how many QALYs did I lose as a public health PhD student?
I don’t know. I don’t really care to know or speculate right now.
I am however confident of this — your findings about my health will come out differently depending on whether or not the analyst is disabled.
Dielle Lundberg
Email: contact@diellelundberg.com
Website: diellelundberg.com
Footnotes:
Short Link for Sharing This Essay
https://medium.com/p/ef791bbd6961/
The Next Essay
The next essay in this series is the second of ten which is entitled “10 Questions Disabled Students Should Ask a PhD Program Before You Make Your Decision.” There are 10 essays in this collection, covering distinct issues that are timely for exploration in public health education.
Essay Collection Goal
My purpose in launching this essay collection is to explore issues of access in public health and health care education for mad, disabled, and/or neurodivergent students and ideas to spur change in praxis and improve the experiences of students, staff, and faculty in these fields. I hope these essays will be generative, so I do hope folks will read, share, and discuss!
Essay Collection Disclaimer
All content expressed in this essay collection reflects my own views, perspectives and experiences and is not intended to reflect anyone else’s. Additionally, when discussing my own experiences, these essays solely reflect my own perceptions and memories of them.
About the Author
