By Erika Sato

In December of 2023, I signed up to co-fill a new operations role with my coworker Ari. The role was called “Care Bear,” and although the specifics still needed to be figured out, it generally involved having an eye toward accessibility at the Law Center. I was motivated to take on this role because I had been having conversations with coworkers about how our culture at the Law Center is very productivity-oriented and that sometimes leads to judgment and shame toward ourselves and each other. After making the connection with ableism, I wanted to explore what an alternative approach might look like.

As Ari and I would soon learn, the scope of the role could be taken in a lot of different directions. We did a staff survey to find out what staff needs might be going unmet related to our physical workspaces, our job expectations, and our social environment. We hosted discussions and trainings on disability justice,[1] access as care and love,[2] executive dysfunction,[3] and fatphobia.[4] We also started to take a look at our external-facing resources and what might be done to ensure as many people as possible could understand and use them. 

At the same time, I was beginning a personal learning journey to better understand my relationship with ableism and disability. I began to educate myself on the history and goals of the disability justice movement, and to better understand how disability justice is integral to our liberation and our fights for justice along race, class, and gender lines. I learned about the ten principles of disability justice, as proposed by disability justice-based movement building and performance project Sins Invalid: (1) intersectionality, (2) leadership of those most impacted, (3) anti-capitalist politic, (4) commitment to cross-movement organizing, (5) recognizing wholeness of people outside their productivity, (6) sustainability and pacing ourselves, (7) commitment to cross-movement solidarity, (8) interdependence, (9) collective access, and (10) collective liberation.[5]

But as much as we learn through study, I believe that the deepest learning happens through our lived experiences. I reflected on my own struggles as I pondered the idea that most people are or will become disabled in their lifetimes. Am I disabled? I didn’t think so. Although I have struggled at times with various mental and physical health issues, it felt inappropriate to claim that identity when so many people live with disabilities that affect their lives and how they are able to move through our society in much deeper, more persistent ways. I had never been systematically excluded from anything due to my access needs. Even so, I was beginning to understand how disability justice offers really helpful frameworks for better understanding our own lives and relating to our bodies.

Image 1: 10 Principles of Disability Justice, Sins Invalid [6]

My Back Injury

In late October 2024, I had an experience that opened my eyes and gave me new insight into access, care, disability, and my own needs. I had already been experiencing chronic back pain and spasms over the past 5 years or so. My dad had similar issues when I was growing up, so I thought I knew generally what to expect. This past autumn, however, something that seemed to start with a regular muscle spasm turned out to be different. After a few days of resting, I was normally back on my feet. But this time, I kept re-injuring my back. The first time it was from something as simple as taking off my shirt. The second time a few days later, it was from an extra long walk. I woke up the following day knowing that something was very wrong, as I had a different quality and intensity of pain than I was used to that wouldn’t relent in almost any position. I kicked myself mentally for overdoing it the previous day, when I had felt the muscle fatigue but chose not to go home early to rest.  I sat with that pain and guilt and shame for 3 days before it started to improve, little by little and interspersed with re-injury occurrences.

I was very lucky to already be in physical therapy for my back when all of this occurred. I am privileged to have great health insurance at the Law Center, and I had started physical therapy in September after being on a waitlist for 2 months, to learn what I might be able to do to prevent the spasms and pain proactively. When I came in presenting with this new and more intense injury, my physical therapist urged me to take it seriously and immediately stop doing all my normal activities. No more swimming, yoga, or ceramics. Even daily life activities such as cooking, cleaning, and walking were strictly limited and required lots of rest breaks. He told me that, as long as I’m continuing to recover, I can gradually add back in 10 minutes each week to one activity of my choice. I was horrified to hear this. Exercise and making art were my main strategies for regulating my emotions and mental health, and without them I didn’t know what I would do. 

Over the next few weeks, I did have a really hard time. I spent a lot of time watching TV and trying to distract myself. I became depressed and unmotivated at work. But gradually, I recognized several shifts within myself. As I continue the process of recovering and gradually returning to my activities into the new year, I want to ground myself in the lessons I internalized through this experience, informed by disability justice principles.

Unpacking my Internalized Ableism

I realized I was holding a lot of judgment for what I perceived to be “taking the easy way out.” One example of this is the reluctance I felt for cooking easier meals and buying pre-cut vegetables. I never thought I would be a person who spent a little extra money for that convenience. But once I realized how much of a toll it was taking on my back to stand and chop and stir and grate every day, I needed to rethink those judgments. The ability to spend hours on my feet chopping vegetables each week is a privilege that’s unreasonable to expect of everybody. Maybe there is still something beautiful about starting a meal completely from scratch, but it’s no longer necessary or sustainable for me to do so every time. I can keep my identity as someone who deeply values and appreciates food and cooking without hurting my body in the process. 

I also had to grapple with my understanding of the roots of my injuries and the issues of blame and judgment. I began to understand more intimately the deep connections between ableism and fatphobia (see DJ principle 2: Intersectionality). In our society health and thinness are often equated. I was often asked, what happened to cause the injury? And I wasn’t sure how to answer. I knew some people might assume because of my body size (although I am mid-sized) that I don’t exercise and my muscles are weak and strained with extra weight  and that’s why I got injured. The societal stigmas surrounding weight and disability were ever-present in my mind, and I was scared to be seen as weak, lazy, or “unhealthy.” I found myself over-explaining that actually, before I hurt my back I was very active and strong, and that’s why it was so hard for me to have to stop exercising now. 

Aside from worrying about what others might assume, I also didn’t have a good answer to the question for myself. I could feel over the weeks of rest that my muscles got weaker and it was harder for me to do things I was able to do easily before. Knowing that the treatment for my issue in physical therapy would be to strengthen surrounding muscles, I felt hopeless, misunderstood, and defensive. I could explain the genetic elements, my history of back pain and spasms, but at the end of the day I wasn’t sure why this was happening now. 

Image 2: Cartoon of author lying on a couch with back pain, wondering “why is this happening?” “Maybe I do need to lose weight…” and “I shouldn’t have done all that yesterday…”

As I continued to re-injure my back, I feared that I was to blame for repeatedly overextending myself. My partner, too, in her love for me and desire for me to recover, would sometimes move into lecturing me to be careful and not overdo it. I think we both fell into this thinking in part because it is a more comfortable frame of mind than believing that this injury was (and continues to be) totally out of my control. But this is a key fallacy promoted by ableist and fatphobic worldviews: the idea that people who are fat and/or disabled are that way because they are lazy, greedy, unhealthy, and bad. There’s a sense that young adults in particular should not have pain or disabilities and should recover quickly unless they are failing in some way, such as in controlling their weight. These beliefs in turn allow thin and able-bodied people to distance themselves from fat and disabled people and from the reality that, in general, none of us can ultimately predict or control whether we will become fat or disabled.

Noticing how this fallacy was impacting my perception of my injuries helped me change my understanding of the situation. The reality is that I can’t know exactly what combination of factors caused the injury, and all I can do is do my best to listen and respond to the signs I’m getting from my body, learn from the past, and otherwise accept that it is out of my control. Expanding this lesson outward, I am holding the importance of not making assumptions or judgments about other people’s lives and bodies based on what we may know about their health or abilities. 

I’m also sitting with the question of why it is so important to me that people perceive me as healthy and active. Even though fatphobia is a topic I have been learning about for several years now, it’s important for me to practice humility to be able to see the harmful and fatphobic beliefs that may still permeate my brain. It has always been an important part of my identity and something I take pride in as a former athlete. Even as I have struggled with my body image and embracing how it looks, I have taken comfort in knowing my body is strong and healthy. I think it’s ok to feel good about myself when I exercise and take care of my body, but I don’t want that to translate into judging others whose bodies and/or choices are different from mine. I am learning to practice reminding myself that everyone has a different body with different needs and abilities, and to separate that from value judgments. 

Social Access, Boundaries, and Solidarity

One of the most challenging aspects of hurting my back was practicing understanding, communicating, and putting into practice my own access needs and boundaries (see DJ principle 6: sustainability). This is something that people with disabilities struggle with every day, but I had been privileged to mostly avoid it thus far, so it was not a skill that I had. And the experience taught me just how difficult it is for a person to (1) understand what’s happening with their body, (2)  figure out what is tolerable, intolerable, helpful, and unhelpful to it, and (3) communicate what they want or need to others in a socially acceptable way moment-by-moment. 

Several weeks into my injury, after I had started to make progress in my recovery, my sister came to visit me from Chicago. This was a weekend trip we had planned  before my injury, and I really wanted to make it fun. I had already given up the idea of going on a hike together, but I thought we could still visit a botanical garden that my sister wanted to see and do some gentle walking there, and meet up with our friend in the city and go out to a few bars.

Unfortunately, I recurrently found myself being grumpy and consumed inside my own head during these activities, trying to figure out if I was doing more than I should be, wondering when to take a break or tell everyone I needed to go home and whether that would upset others, feeling guilty that I had overestimated my capacity in planning the day, and generally worrying about my back. Luckily, when I had to inform the group that I could not actually dance at all or even stand on the dance floor anymore, we found a fun alternative activity of playing pool. But my sister and I did end up getting in an argument after the botanical garden due to our various conflicting stresses. Talking through everything and sharing what we were individually going through was the only thing that allowed us to reconnect.

On the other hand, I also learned how affirming and bonding it can be when this cycle is interrupted by others remembering what is going on with you and asking about your needs or making accommodations proactively (see DJ principles 7 and 8: Commitment to Cross-Disability Solidarity and Interdependence). I had many friends and coworkers who checked in on me, told me they were thinking about me, proposed unconventional hangouts (e.g., “Let’s both lie on the floor of your living room and talk!”), or asked me if I needed to take a break or was doing okay while we were together. These efforts made me feel seen and loved. I hope to remember those feelings and carry forward a new understanding of what might be helpful and validating for others who are struggling with new access needs or disabilities.

Image 3: Text messages between author and coworker Hasmik, stating “Hi friend, how’s your back today?” and replying “Aww thanks for thinking of me! It’s a little better today” 

Respect, Love, and Care for My Body and Mind: Recognizing my own wholeness and finding sustainability

Growing up, I had always been told from all different sources that I needed to push myself in order to succeed. I was taught through school, sports, and at home that sacrifice, effort, and hard work were what mattered—no pain, no gain. I swam competitively for 11 years, and during that time I deeply internalized the message that I needed to push my body through pain in order to be successful. I believe that all of these messages are tied to our culture of capitalism and the idea that in order to be valuable, we have to be productive (see DJ principles 3 and 5: anti-capitalist politic and recognizing wholeness). 

Image 4: Swim team practice with most kids swimming, one kid on the side of the pool saying “Coach, my shoulder hurts!” And the coach replying, “Stop being a slacker.”

Of course, I had also learned the consequences of pushing my body too far, injuring many joints over the course of my life. But what was still missing was a willingness to listen to and value the early signals I was getting from my body, and a true belief that exercise didn’t have to be extreme in order to be worthwhile.

Over the last few months, I have started really listening to my body at a deeper level. Encouraged by my physical therapist, I had to become more sensitive to the small changes in the ways my back felt so that I could adapt my stretches and activities accordingly. He told me “no pain! If it hurts, don’t stretch that far. We’ll figure out another way.” I realized that I had been ignoring pain in certain problem areas in my back for a long time, subconsciously assuming that all I could do was suppress the pain signals and get on with my life. I am learning instead to notice the signals from my body and treat them as valuable information, and offer my body gentle care and low-level activity as needed. 

In an analogous way, I have also been challenged to understand my emotions at a deeper level. In the past, I had always tried to fix my low moods through exercise or distract myself through activity. When I was confined to the couch, I couldn’t do that anymore, so I had to sit with and try to move through the things I was feeling. I began to rely on other self care strategies such as heat and ice, aromatherapy, and meditation. 

Image 5: Author’s depiction of her bodily awareness during meditation with blue areas indicating pressure from the floor, red areas indicating pain, and yellow areas indicating the movement of breath.

One important element of this physical and mental self-care was learning to rest, and to value rest (see DJ principle 6: sustainability). I often had to sit or lie down and do nothing productive. Sometimes even turning my head to watch TV was painful, and I literally had to do nothing. Through learning about meditation and mindfulness, I had a framework to understand why this was both challenging and important. But it was really only through doing it that my brain began to make small changes. I noticed that, without the option to keep going all the time, I had started to decouple time and productivity (see DJ principles 3 and 5: anti-capitalist politic and recognizing wholeness). I had always deeply internalized that “time is money”-- maybe not so much in the literal sense of pursuing wealth but in the sense that my time had better be spent doing something useful or enjoying something worthwhile. But ironically, this belief often leads to my “enjoying” time being tempered by a heightened awareness of the passage of time and anxiety about whether I am, indeed, enjoying myself or resting effectively. It was only through spending my time doing nothing that I have been able to begin to let go of this time anxiety and notice and enjoy small, mundane moments more presently.

Conclusion: Expanding outwards

Many of the learnings I share above are still works in progress and are specific to my own internal life. But I don't believe there is such a clear separation between self and other. That is, our self conception and the expectations we hold for ourselves affect our relationships and the way we treat others. By working to confront my own internalized ableism, I improve my ability to not project it onto others. By working to accept my wholeness decoupled from my productivity, I improve my ability to see all other humans as whole. The truth is that it’s really hard to have a body, and it’s something we all struggle with, although in vastly different ways and degrees. But accepting and even uplifting these struggles and differences in ourselves and others allows us all to be more human. The wise guidance taught by disability justice organizers offers us a path toward this goal in our movements and our lives.

Footnotes

[1][^Jump back] See 10 Principles of Disability Justice by Sins Invalid; Disability Justice: An Audit Tool by Leah Lakshmi Piepzna-Samarasinha.

[2] [^Jump back] See Access is Love Reading List by Sandy Ho, Mia Mingus, and Alice Wong.

[3] [^Jump back] Check out this short Youtube series on the Wall of Awful for a primer.

[4] [^Jump back] Check out this Interview with Da’Shaun Harrison, author of Belly of the Beast: the politics of anti-fatness as anti-blackness and the Maintenance Phase Podcast including this episode on The Trouble With Calories to start.

[5] [^Jump back]See 10 Principles of Disability Justice by Sins Invalid.

[6] [^Jump back]10 Principles of Disability Justice by Sins Invalid.