I am a disabled, neurodivergent, queer, cis-gender Yugoslavian woman. I’m also a dancer, a movement instructor, a dog momma to an elderly miniature poodle named Arte, and a librarian! What I want to share with you is my own experience and perspective, both from living in my disabled body in an ableist society and from being a part of the library and academic world for the last twelve years.
I was not born disabled. When I was twenty-four, ongoing numbness in my torso led to my being diagnosed with multiple sclerosis, or MS. MS is often referred to as an autoimmune disease, which means that the immune system gets confused and attacks the body rather than something harmful, like a virus; with MS, the immune system attacks the nervous system. MS is a chronic illness. It currently has no cure and often worsens progressively. Even neurologists who specialize in MS don’t know why MS happens. Each person with MS experiences the disease differently, though we generally have similar symptoms throughout our lives, such as numbness, brain fog or “cog fog,” blurred or lost vision, and loss of mobility.
Disability is an identity that any person might gain at any time during their life. Since joining the library community in my early twenties, I’ve observed that many non-disabled people are unaware of this or choose to ignore it, in the same way they often ignore and forget about disabled people generally. Our world is designed by and for non-disabled or able-bodied people: we live in an ableist society. Ableism is discrimination against disabled people, the belief that disabilities need to be fixed or “cured,” that disabled folks are “other” and not “normal.” Ableism means that disabled folks often must ask for an “accommodation” in order to participate in events, access a space, or complete tasks in a work environment.
Ableism is not always obvious. It can be the lack of an accessible entrance to a building, not providing a sign language interpreter, or a lack of fragrance-free policies in enclosed spaces, and it even permeates the English language. I catch myself using phrases like “turn a blind eye” or “falls on deaf ears.” It’s taken time to reprogram my brain to use words like “wild,” “intense,” or “chaotic” instead of “nuts,” “crazy,” or “insane.” There are ways to express ourselves that do not discriminate against the disabled community; however, ableist language is still commonly used and can be difficult to unlearn.
So how does a disabled body get by in this ableist world? It’s not easy. In order to navigate and survive as a disabled person, I often need to build up support and sculpt the environment in a way that keeps my disabled body functioning at a level that’s expected of me in our society. That became easier in many ways due to the COVID-19 pandemic.
When the pandemic hit Seattle in spring of 2020, many services that could become remote did so. I remember thinking that this could be a huge breakthrough for disability justice. Before, we would need to jump through the accommodation hoops in order to work a job remotely; then, suddenly, the world was finding ways for many people, not just the disabled community, to do their work from home. In the library world, conferences went online, professional development opportunities transitioned to being fully remote, and libraries found new ways to offer many of their services remotely, such as virtual reference appointments.
This transition to online services opened up the world for the disabled community and had a significant impact on me personally. I have worked remotely since graduating from library school in the spring of 2020 (great timing, right?). Working remotely gives me the space to be sick while meeting our ableist society’s expectations of productivity, expectations which are based on cultural norms: white, cisgender, straight, able-bodied. These expectations are often difficult for non-disabled people with competing priorities; imagine trying to meet these standards while also navigating the job of living with chronic illness!
Living with MS, there are days when I am so fatigued I can’t get out of bed or when I need to do my work while resting on the couch. Before the pandemic, I was limited to one or two big activities a day, one of which would be a bus ride to and from the activity or function. If I worked an eight-hour day, I could just forget about doing anything else: it wasn’t gonna happen. If I tried to act like everything was fine, I’d wind up unable to drag myself out of bed the following day or week. Now, I can review library assignments or participate in Zoom meetings while experiencing severe vertigo or ocular migraines—which I have done—or shift my work that day to the next, if needed. I also have the flexibility to attend various health-related appointments without using all my sick time in one week.
With the ongoing pandemic and remote work, I travel from my apartment on very rare occasions. I am able to take naps when needed, snack often, and, frankly, put off showering most days. I never need to be “on” for an extended amount of time, or present and presentable beyond looking fine in a pixelated webcam for a Zoom meeting. It would take something important and eventful to persuade me away from my cozy, comfortable, and crip-friendly work-from-home environment. Of course, something like that was bound to happen eventually!
On Thursday, October 13, 2022, the University of Washington Librarians and Press walked out. The one-day strike on the UW Seattle campus was in response to contract bargaining that had been going on for over a year. We hoped that our strike would show our strength and determination and inspire more forward and positive movement toward the completion of our union contract. As a disabled woman, I had additional concerns as I contemplated a day-long strike. I was excited to support my colleagues, but I was concerned about taking care of my disabled body during that process. I knew the biggest challenge would be managing my energy levels throughout the day, so I thought: What about a walker with a seat?!
Using a walker at the strike was great in many ways. I had a place to sit down and rest whenever I needed (often) and I had support during the frequent walking and standing and marching. Foot-drop (difficulty lifting one or both feet due to poor nerve conduction) is a common symptom with MS, and if you’ve ever been to the aptly named Red Square at the UW Seattle campus, you know that it’s completely paved with red bricks (if you haven’t, now you know!) Bricks are not the easiest things to walk over, foot-drop or no foot-drop, and in a city that gets as much rain as Seattle, they can be extra treacherous. Fortunately, it wasn’t raining on the day of the strike!
As the day began, I felt happy with my decision to use a walker. Sure, I still worried about the sidelong looks, or being overlooked entirely because of the stigma and discomfort many feel when observing disabled folks. I am a young-looking person with no obvious physical disability and I was one of the only people using a mobility aid at the strike. But I enjoyed the sense of camaraderie I felt with a little dog, who was also using a mobility aid to wheel around campus, and, later, I became friends with the sound team that showed up to support our strike, as they were wheeling around their equipment.
However, using a mobility aid, and specifically a wheeled mobility aid, also reminded me of the many ways that the UW Seattle campus is not designed for my disabled body and my disabled community. As the strike march moved from in front of the Suzzallo-Allen Library, across Red Square, to the Odegaard Undergraduate Library, most of the participants went up a staircase rather than taking the more circuitous route to a ramp. The march then moved to Gerberding Hall and up several flights of stairs. After that, the march proceeded through Suzzallo-Allen and up even more staircases, including the one outside the library building and another immediately upon entering.
Where was I, you might ask? I was taking the long and winding road to accessibility. I was always separate from the main group. In Suzzallo-Allen, I had to go all the way around and through a side hallway in order to get back to the main hall, because someone thought it would be an attractive design feature to build stairs directly inside the main door. Additionally, when I located a bathroom in that same library building, it was marked accessible but had no automatic door. I again faced a challenge of getting into and out of the bathroom using my mobility aid, and was reminded yet again that putting bars next to a toilet does not an accessible bathroom make.
The day of our strike, I found myself often on the edge of the group, isolated, searching for a ramp or an elevator in order to keep up with my colleagues. As we chanted about justice and equity, I couldn’t help but think about how marginalized I felt. I knew it wasn’t intentional, in the way that ableism often sneaks in without being known or named. The folks who planned the strike did not organize the march in a way that considered folks who used mobility aids. I know this wasn’t because they don’t care about me or value me as a colleague—it just didn’t occur to them that the paths we would travel were not accessible. I understand that, but it still doesn’t feel good. What would it have looked like if I or other disabled folks with mobility devices led the route instead of being left behind?
More and more, I hear folks saying, “now that we’re back to normal,” or making wishful comments about finally going back to the way things were prior to the COVID-19 pandemic. But things weren’t working for disabled folks prior to the pandemic, and now it seems likely we’ll lose any forward momentum. Fewer events are prioritizing or even including a remote option, telework is no longer an option for many jobs that could be done 100% remotely, outdoor seating at restaurants is vanishing, etc. I worry that, once again, we’ll go back to being the invisible population, and it shouldn’t have to be that way.
All of those changes we were obliged to make during the pandemic—those steps toward better accessibility—didn’t just benefit the disabled. Telework options can help folks who live in sick, disabled bodies as well as caregivers who might need to stay home with a sick child or parent at a moment’s notice. A ramp is necessary for someone using a mobility aid, and also for a parent pushing a stroller, or a biker. A sign language interpreter means that Deaf folks can participate in an event and detracts nothing from the participation of hearing folks. This concept is Universal Design, and it shows that if we consider more people in all aspects of society—rather than only the non-disabled—everyone will benefit.
The UW Librarians and Press deserve a fair union contract, and sooner rather than later, UW! And while you’re at it, it’s time to reassess how this campus, community, and broader society approaches accessibility. Let’s take that forward momentum into a more equitable and accessible world. I deserved to be part of the group that day during our strike. My fellow disabled folks deserve to be included, seen, heard, acknowledged, and respected. All the time, in every way. We have taken the road less traveled, the back-alley entrance, the side hallway, the ramp by the dumpsters, and we grow weary of being an afterthought. Our well-being and value cannot be summed up by a checklist of requirements—requirements which often do not consider the functionality of a space, an object, or an event. We’re done waiting. It’s time now for libraries, universities, and the whole world to put the disabled community and accessibility first. Imagine what an inclusive and supportive world that would be for everyone.
Author update: we DID get our contract by the time this was published!