Recently, I had the chance to attend the Disability Rights, Education, Activism, and Mentoring (DREAM) Conference at UAB. The conference was entirely virtual; although students gathered together in certain rooms on campus, we signed in to an online seminar series that was being broadcast simultaneously at multiple universities across the U.S. To my knowledge, this was one of UAB’s first real attempts to conduct large-scale disability outreach and join the conversation on a national-level.
As an MD/PhD student with a chronic illness (feel free to read more about my personal story as shared by the AAMC here), I was glad to see UAB engaging more deeply in disability-related topics. The conference even gave me the opportunity to gain a new friend (woo hoo!) in a kind, lovely fellow graduate student with a background similar to mine. This was exciting because chronic illness can feel isolating in the medical/graduate world, and it is often difficult to find students who have similar experiences.
It is my hope that DREAM was only the beginning and that this institution will continue to bring disability-related events to campus. Eventually, I hope UAB will also progress to facilitating more “live” discussion amongst students and faculty. There are undoubtedly so many important stories to share and to be heard on this campus.
For the purposes of UnABridged, I would love to share a few of the most crucial things that I gleaned from the DREAM conference. Some of this was validation of information with which I was already very familiar (see point #1), and some of it was pretty new insight for me as well (see point #2). I’ll end with a few overall thoughts about what I have learned from this conference and from my general experiences about where disability stands at the university level in point #3.
1. Spoon theory is a powerful way to conceptualize invisible parts of illness/disability.
“Spoon theory” was invented in a blog post by Christine Miserandino, a woman with a chronic illness. The concept quickly gained national momentum as a metaphor for people with illnesses and disabilities to describe abstract symptoms like fatigue and/or cognitive fog that may accompany their condition. The basic premise is this: How frequently do healthy individuals stop to think about how much energy they expend by simply living their lives, and how that might change if they lost the energy stores that are often assumed to just exist?
Ms. Miserandino spontaneously chose to challenge her friend with these questions over dinner by collecting all of the spoons she could find and using each one to represent a limited supply of energy that could be removed depending on the task at hand. The concept has resonated so deeply with so many people in the disability community that those who relate to it sometimes identify themselves as “spoonies.” In fact, when a few of my words were shared by the University of Michigan’s “Docs With Disabilities” series on Twitter recently, the hashtag #spoonie was added by the campaign as part of the post.
The first time I heard about the concept of “Spoon Theory” was nearly three years ago. Just as Ms. Miserandino did, I immediately started using it to help some of my friends understand the more challenging parts of my chronic illness, but with my own story as a backdrop:
“OK,” I begin. “Here are your spoons for today. You’re in bed and your alarm is going off. What’s the first thing you do?”
“I use the bathroom and brush my teeth.” My friend is quick to respond.
“Hang on!” I stop her. “You’re still lying in bed. You have severe weakness and paralysis down your left side today. The first thing you’re going to do, theoretically, is to stand up, right?”
“Well, yes…” I put a spoon down. Nine remain.
“Now what?” We begin to walk through the day more slowly, stopping to ponder things my friend had never considered as possible barriers for some individuals.
My friend decides not to take a shower that morning because I explain that she’ll lose another spoon from the standing and maneuvering involved. Fortunately, my illness never really affected my arm strength, so she didn’t lose a spoon from getting dressed – but I know this is a common loss for my peers who have conditions like fibromyalgia, lupus, and/or multiple sclerosis.
She grabs a Pop-Tart for breakfast, even though she doesn’t really like them, because this again saves her a spoon. She loses two spoons on the walk (or that day, the limp) to class. Then one more for a brief social interaction with her peers, and another for trying to pay attention to the lecture. She eventually has to switch her brain “off” and start recording the class because she can’t afford to lose another spoon.
And the day goes on, just like this. Taking a nap usually reclaims a spoon or two, which she found that she already needed to do by the time she made it back to her room after class #1. Sometimes there were simply fewer spoons in the beginning stash, depending on the symptoms “we” had upon waking up.
My friend, who was so kindly patient with me, found herself frustrated when I told her (in what I imagine will someday be my “stern mom” voice) that she couldn’t do something. At the same time, and more profoundly, she said that her heart broke as she realized what this actually represented for so many people.
“It is sad.” I admitted. “But there is some beauty in it. If you know you only have 10 spoons – can you imagine how fiercely you protect those spoons? Can you envision how deliberately you make every move and how much of yourself you invest in the things you choose to do?”
I have found that there are a few caveats to spoon theory in terms of fully encapsulating the experience of chronic illness – namely that I do not always know how many spoons are in my own hand, and I am often not “warned” like my friend was before a spoon is taken away. But, as an introduction into the lives of those who have an illness or disability that involves chronic pain, fatigue, and/or other invisible symptoms, it is a pretty strong illustration.
2. There are different models of disability, and “medicine” has an interesting role in them.
Unlike spoon theory, a lot of the material in this particular section was fairly new to me. I have never taken a disability studies course. None were offered at my college, although my sociology class touched upon the subject briefly.
I had heard of the terms below and certainly experienced the spirit of these ideas, but this turned out to be a great learning session for me and something that I want to share with other medical students. It is my hope that together, we can understand crucial parts of “Disability Studies 101” and where medicine complements or conflicts with how we each see disability.
Essentially, there are two main “models” of disability:
- Medical: This model says that a disability puts someone at a disadvantage and makes him/her less able to thrive in the world. Those who subscribe to this theory would say that we should aim to “fix” or “cure” the disability to “alleviate the suffering” the disabled person must experience.
- Social: This model says that disability is a neutral difference, not something that makes the person less than others. The “problem” in the social model is not the person or his/her disability, but society’s failure to be inclusive and accessible to all.
- Note: The latter model is the focus of the field of disability studies, and it is the much preferred model by almost all people with illnesses and/or disabilities.
To picture and better understand these two models:
Envision a student with a disability – and in this instance, specifically a student who requires the use of a wheelchair. He or she is sitting in the chair in front of a flight of stairs.
- The medical model of disability would view this situation and conclude, “The problem is the person. He/she can’t climb up those stairs. We should provide prosthetics so that they have the ability to climb the stairs like everyone else.”
- The social model of disability would instead state, “The problem is the stairs. The institution should make a ramp or an alternative route that would allow anyone the ability to get to the same place as their peers.”
This segment of the conference was only a small portion of a 27-minute video created and presented by two students with disabilities. It explained the very basics of how we can study disability and the relevant societal structures we encounter in response.
Yet even as someone who has been chronically ill for years, I found some of these concepts (and especially the more complex points that followed in the video) to be not only liberating/fascinating, but also information that I never received in any class or lecture.
It turns out that ¼ of the U.S. population will develop a disability by the end of their career. Moreover, that percentage is likely higher in the specific populations we will encounter as physicians… so it’s pretty startling that some of us (even those directly impacted by its implications, like me!) are largely unaware of this information.
Thus, I realized just how crucial it is that our U.S. medical curricula incorporate even something as basic as the first portion of this “Disability Studies 101” conference session as outlined above. A failure to understand the difference between these models could easily result in a discrepancy between our goals as medical providers and our patients’ goals. In turn, our misunderstanding of disability culture may then lead to attitudes and mentalities that add to the barriers that people with illnesses and/or disabilities face, rather than assuring that they have the tools they need to live their most empowered, happy lives – whatever that means to them.
The latter is the only type of medicine I wish to pursue.
3. Most of the pioneering in the disability movement falls upon the shoulders of those with disabilities.
At DREAM, I was again reminded that advocating for change requires enormous amounts of energy, patience, and hard work from the vulnerable population. It often falls upon the disadvantaged or disabled to not only explain to others how/why their actions are unintentionally posing a barrier, but to do so in a way that will “make” people want to be receptive to their ideas. Furthermore, these ideas for change are often ones that the disadvantaged groups have generated themselves, without much guidance. And still, beyond all of that, the power dynamics that exist in higher academia can make it difficult for those students to simply access a platform on which to discuss or present the ideas that they have fought so hard to develop and distill into understandable, powerful, actionable points.
I noticed this paradigm silently surfacing before DREAM even began, as I found myself scrutinizing the nature of the included seminars. I have selected just a few relevant titles that I think illustrate the student-led nature of the disability movement below:
- “Defining activism and how students can work for campus change”
- “How students can handle disability-related problems on campus”
- “Be a better disability rights activist by knowing your disability history”
- “Disability Studies 101 for student leaders”
- “Beyond Google: Finding disability-related information and resources online”
- “Policy activism: How you can affect policy and law at campus, state, and federal levels”
- “Developing ally trainings with disability allies on campus”
- “Saving your ‘spoons:’ Taking care of yourself while dealing with ableism”
In many ways, I was glad to see these courses offered. I have become pretty passionate about advocacy, education, and mentorship during my time at UAB, so I was eager to learn more about active roles I can take to make a difference. At the same time, however, it saddened me to realize how much each of these sessions seemed to run under the assumption that the pioneers of the disability movement are also those who are affected by its shortcomings and who may already be at the end of their rope.
Unfortunately, until entire institutions and larger groups of people become more informed or passionate about disability issues and policy, it is often up to students with disabilities to advocate for themselves. They are tasked with the extra burdens of finding their own resources and learning “how to tell” their own stories in a way that is concise enough not to bore people but detailed enough to fully describe the scope of their abilities. They are tasked with the extra burdens of starting their own groups on campus, generating their own ideas for their accommodations that will allow them to participate fully in class, and petitioning for access to spaces that others may not even realize are inaccessible to students who fully matter. This work can be exhausting for those who, as mentioned in point #1, have a limited number of “spoons.”
The good news here, if some should be found: To me, all of this means there is certainly an important gap in the disability movement that can be filled by those who may not be directly affected but who want to help.
Overall, I felt that this conference was a solid first step for UAB in terms of acknowledging disability in higher education as well as in equipping and empowering students who have a chronic illness and/or disability. I was delighted to attend, and I am honored to now be certified as a Campus Accessibility Ambassador as a result.
It is my deepest wish that this type of momentum will continue – not only at UAB, but at many colleges and medical institutions across the nation. I hope medicine in particular can soon begin to fully embrace the beauty that those with a disability can bring to a field that paradoxically has a major purpose of trying to better understand the challenges, successes, and needs of those with disabilities.
-Emily Hayward, GS-1