I’ve had migraines for over 20 years.
I didn’t seek workplace accommodations for them until this year.
The biggest barrier to getting accommodations at work was my own internalized ableism, but of course I came by it honestly in our society. There were two elements holding me back. The first was shame about my limitations. It felt like I should be able to muscle through it. For years, I taught classes, worked reference desk shifts, and gave talks while feeling excruciating pain, nausea, dizziness, a fuzzy brain, and sometimes delightful visual or olfactory aura (you haven’t lived until you’ve tried to work while strobe lights only you can see are blocking more than half your field of vision). Not muscling through felt like weakness. I wanted to be a team player! The other thing that held me back was feeling like what I had wasn’t really a disability. Sure, it often kept me from living my life and completing important tasks — lying in a pitch black room, feeling like there’s a knife in my head and I’m on a boat on stormy seas, doing everything in my power not to move so it wouldn’t get worse. Sure, sometimes I have had migraines half the days of each month, but it’s not a disability. I think there’s something about migraines being called headaches that make them seem like no big deal. I read somewhere that they’re starting to be called migraine syndrome, a reflection of the fact that they cause more than head pain and impact more than the brain. Migraines impact each individual so differently; some people don’t even have headaches but experience dizziness and weakness, debilitating gastrointestinal symptoms, or even temporary paralysis. My migraines range widely in severity and symptoms — some are almost manageable and others destroy me for days. But they are a disability. When I have one, they substantially limit many of my life activities. And yet I spent years thinking that other people with disabilities would laugh at me for thinking I belonged under their tent.
Part of confronting my workaholism meant confronting my tendency to downplay and muscle through my own physical and psychological pain. So I decided to finally seek accommodations for my migraines. The two years working fully from home made me realize that I could work through many migraines by working in the dark lying down. I only needed to take sick leave once in two years for migraines. I first informally asked my boss (after first checking in with my amazingly collaborative and supportive fellow reference and instruction librarians on my campus) if I could work remotely when I had a migraine. My manager asked me to go through the College’s ADA accommodation process, which she believed would support me better in the long-term (and yes, I can understand that having it documented that way means it can’t be summarily taken away by a future boss). Unfortunately, it’s also a dehumanizing process. First, I had to get my neurologist to complete the unnecessarily invasive form from my College, which she initially didn’t want to complete at all because it asked her to tell them what my accommodation should be when she really wasn’t the person who should be determining that. Then, after two months with no response from HR, I went to a meeting with my manager and the ADA coordinator. First of all, the ADA coordinator told me that my request was so strange and difficult because I couldn’t predict exactly when I’d get migraines. It made me wonder how much she knew about disabilities, given that most chronic conditions are unpredictable. The whole conversation, in which I was mostly spoken about in the 3rd person, made me feel like a massive inconvenience, the very thing that had kept me from acknowledging my disability for two decades. Ultimately, we agreed on the exact same thing I’d asked my manager for many months before. And more than a month later, I still have nothing in writing. It’s been really demoralizing, and yet I know it’s so much less onerous and humiliating than it’s been for many library workers who’ve gone through these processes at their institutions.
Two weeks ago, at the super-fantastic CALM Conference, there were a few sessions about ADA accommodations and creating an inclusive and accessible library culture (I believe only one was recorded). Part of me felt a sense of belonging, knowing I’m not the only one dealing with these issues. Part of me felt angry that so many people who already have heavy struggles have to jump through these ridiculous hoops to get what they need to do their jobs effectively. Because this isn’t about getting special treatment. It’s about equity. It’s about getting everyone to a place where they can do their best work. It got me really thinking about what a truly accessible workplace would look like if we applied universal design.
From the National Disability Authority in Ireland comes this definition of Universal Design:
Universal Design is the design and composition of an environment so that it can be accessed, understood and used to the greatest extent possible by all people regardless of their age, size, ability or disability. An environment (or any building, product, or service in that environment) should be designed to meet the needs of all people who wish to use it.
-From What is universal design
The NCSU Center for Universal Design (which ironically is not currently funded because, you know, this isn’t important), proposed these principles of UD:
- Equitable use
- Flexibility in use
- Simple and intuitive use
- Perceptible information
- Tolerance for error
- Low physical effort
- Size and space for approach and use
The goal of universal design is to design spaces to minimize the need for accommodations because they work for everyone by design. While has primarily been discussed in the design of spaces and objects, I feel like the concept could be extended to organizational design. What if we provided not only spaces and furniture that helped employees do their best work, but also designed the organizational structure for maximum inclusivity?
There are so many problems with my current office workspace (a cubicle farm) and all of them, while impacting my and my colleagues’ comfort and well-being, also impact our ability to do our best work and to be at all productive. Most involve noise issues, lots of people coming into and walking through our space, temperature issues (so cold it literally makes my fingers cramp up so I can’t type), and smell issues from a microwave that none of us who work in the space actually use. We’ve brought up these issues with our manager and have not really received support. The only gains we’ve ever made have been when we could tie improvements in our space to bigger issues like COVID (we got air filters), student privacy (we’re getting a tiny windowless closet-like space in which to do Zoom reference), and the rodent problem in the library (we might get permission to remove the microwave); concerns about our well-being and productivity do not seem to move the needle. The result is that we are significantly less productive than we would be without the constant noise interruptions AND we feel like our needs are being categorically ignored (which, let’s face it, will also impact productivity).
So what would universal design in a workspace include? These are just off the top of my head. I’d love to hear suggestions from others:
- Highly adjustable furniture and ergonomic tech — there will probably still be a need for custom chairs to be purchased for people with very unique needs, but offering highly-adjustable chairs will work for a wider variety of individuals. I just recent got a new chair that has adjustable seat depth, tilt, etc. and I can’t tell you how much better I feel when I get up from that chair than I ever did in anything I’ve had in the past. My chairs in the past just went up and down and didn’t really fit my 5′ frame. I plan to start wheeling it to the reference desk because the chair there is way too big for me and it’s caused back and shoulder tension that helps cause migraines. I also have a sit-to-stand desk that goes below the average desk height, which is perfect for a tiny person like me. Adjustable sit-to-stand desks really should be the default now.
- Better control over temperature or some kind of portable heating (that won’t cause a fire) for people who are cold. My Bob Cratchit gloves are not cutting it.
- If it’s not possible to give everyone workspaces that aren’t full of noise and interruptions, at least offer spaces where people can go to work in silence when they really need to concentrate or become overwhelmed by all the activity in their workspace (and those spaces also need highly-adjustable furniture so that person doesn’t have to hurt their body to work there). I’ve been many many times more productive at home over the past two years because I’m not constantly interrupted by slamming doors, people talking loudly on their cell phones just over my cubicle wall, etc. I can’t even imagine how much more awful spaces with constant interruptions like that are for people with ADHD or are neurodivergent.
- If people work in a cubicle or open office setting, they should be offered noise-cancelling headphones (with choices about the type they prefer) without even needing to request them.
- Alternative lighting to the horrible overhead fluorescents for shared workspaces. They trigger migraines for me and aggravate existing ones, but because I work in a space with many other people, it’s not like I can unilaterally choose to turn them off. My colleagues were kind enough to allow me to have blue light covers installed over them so they’re less harsh, but they’re still a problem. It would be great if people were all given lamps so if a colleague needed the overhead lights turned off, it wouldn’t be a problem. Migraines are super-common in our profession and others struggle with those awful harsh overhead lights.
- Maybe also spaces where people could easily talk to each other and collaborate without disturbing everyone else. It’s damn hard to be working on something that requires concentration and have two people talking to each other just a few feet away from you. I’ve been on both sides of that equation. I think this would also be helpful for people to take online meetings. Pre-COVID, it was frustrating to have to work while a colleague was doing an online meeting right behind or next to you, but now, with the huge number of online meetings we have, it would be intolerable.
- Certainly a convenient private place for new mothers to pump breastmilk that isn’t a bathroom. Also a prayer and meditation space. Definitely gender neutral restrooms. People shouldn’t have to ask for these things because only people with the most political capital and the least precarity will.
- When there are events that include meals, ask people about their dietary restrictions/allergies in advance so everyone has access to full, healthy meals.
- And certainly let people work from home when they need to do work that requires concentration and they don’t otherwise have to be in the library.
- I’m sure there’s a lot more stuff that I’m not thinking of. What else would you add to this list?
An organization that embraces universal design would be focused on figuring out how to help you do your best work rather than making you feel bad or demanding for having needs that aren’t met by the current set-up. Obviously we will work better under circumstances that nurture rather than stress us. Some of that might mean shifting management style, work hours, what tasks or roles you’re given, etc. Some of it may mean accommodating specific needs or limitations you have. Ideally, you shouldn’t have to get a doctor’s note or go through an invasive and dehumanizing process to get the working conditions you need to be successful. What might that look like?
- This is an obvious one, but organizations should have solid documentation and a comprehensive on-boarding process so new people don’t have to struggle so much in the first place. I’ve never worked anywhere that did a good job of this. We had a new part-time reference librarian start this past week and she sent a panicked Slack message on Saturday morning because she couldn’t log in to her Zoom account through the College to get to an appointment with a student. Those of us who’ve been at PCC a while, know that for some reason the SSO Zoom login never works in regular Chrome (you get a 400 error) so you need to either open an incognito window or use Firefox. But that was not communicated to her. Thank goodness I happened to be on my computer and hadn’t closed Slack for the weekend so I answered, but that stuff should be documented. We shouldn’t normalize that panicky clueless feeling a lot of folks feel in their first year in a job; it should and can be easier. For people who suffer from anxiety, that experience is even more fraught.
- People at all levels of the organization feel like their voices are heard and valued. Feedback is solicited, welcomed, and taken to heart; there’s no evidence of listening theater. Decisions are not made about a service area without working with and hearing from the people intimately involved in the work. Communication is transparent and frequent so everyone understands why and how decisions were made.
- Managers erect guardrails to support healthy work-life balance for all and that prevent employees from having to set individual boundaries to protect their time and well-being, because we know that only people with secure jobs will be able to set those.
- So long as people are getting the needed work done, they are trusted to get it done in what way works best for them.
- Your manager should have a long conversation with you about how you work best. What management style works well for you? What is your ideal work style? What can I (the manager) put in place to help you be successful? I’m the sort of person who does her best work when I am working on one thing for a good long period of time rather than in bits and spurts. I don’t get bored and I don’t need/want to switch tasks. In fact, switching tasks is pretty deadly for me as it takes me a long time to get back into something. But my job isn’t set up in a way that enables such work.
- Your manager would also ask you about when you’re most productive and try to give you a schedule that helps you do your best work. I am most productive in the mornings, so having 8-12pm clear helps me do my best work. I have a colleague who is productive much later in the day and prefers coming in at 10am. Within reason (obviously a library has to be staffed), a good manager would try to learn this about their staff and let them work a schedule that works for them.
- Your manager would also ask you about needs or limitations that they can help to accommodate without needing to be invasive. You wouldn’t have to tell your boss you have a specific disability, but you could say that you occasionally need to work from home when you’re having a flare-up or that you can’t drive when it’s dark. Or that your condition makes it very hard for you to manage things like instruction calendars or managing multiple calendars. You could also talk about caregiving limitations. That you have to pick up a child at school at a certain time each day. That you might need to frequently flex your time to take an elderly parent to appointments. We have to stop treating caregiving needs like something you shouldn’t talk about at work or something that somehow shouldn’t be factored in. I felt like the minute I had my baby I was supposed to pretend he didn’t exist, at least in the sense that he had needs I had to fulfill. I once interviewed for a job where the Dean told me “people who want to spend time with their families shouldn’t take tenure track jobs.” I’m sorry, what??? It’s amazing that a feminized profession can be so hostile to parents, but stories like this abound. To this day, no one in a leadership position at my library or college has done anything to explicitly support working parents during COVID nor has even acknowledged the extreme difficulty of being a working parent during COVID. And the stress of those of us who live with folks who are immunocompromised has been equally unacknowledged by most organizations.
I think we can get stuck on the idea that everyone should be doing the exact same things or have the exact same expectations. My library is that way. Every ref/instruction librarian works one evening reference shift per week. Everyone does x# of hours at the reference desk (and now x# of hours of zoom reference coverage). It stays the same even when we know that other aspects of our workloads are extremely unequal. Occasionally we make exceptions when people have taken on additional roles, but not really to accommodate conditions they may have or limitations in their lives. We also don’t make changes based on people’s interests and abilities. My former colleague and I did that for each other informally. She took on more hours at the reference desk (her favorite thing to do) and I coordinated the instruction calendar (which I’m good at) and took on more teaching (which I love doing). Seeing how that kind of flexibility was possible made me wonder if it could be done at a larger scale. But if nothing else, we should reject this idea that equal means equitable. There are people who enjoy having evening shifts because it gives them time during a weekday to run errands (that was me before I had my son). There are people for whom having evening shifts is a constant cause of stress and juggling because of their status as a caregiver or because they can’t drive at night and have to deal with public transit that’s really unreliable in their area at night or whatever. Yet we act as if giving these people the same thing is somehow equitable. If it’s working great for one person and turning the other person’s life upside-down, it’s not equitable. But again, we’re supposed to pretend that our bodies, children, sick relatives, and needs don’t exist when we go to work, right?
Obviously, there are realities of the job and we might not be able to get schedules, work spaces, or the exact flexibility we’d ideally want. There are aspects of our jobs that allow for more and less flexibility as we all saw during the pandemic. Some parts are inevitably inflexible and others really depend on the manager. I know that I had far more gas in the tank for jobs where I felt supported, trusted, and was given more of what I needed to be successful. But I’ve never worked anywhere where there was really a focus on trying to adapt the job to the person. What would that feel like?
When we start a new job, we are expected to adapt and assimilate to the existing culture. And maybe that worked in 1950’s white-collar work when nearly everyone was a middle class White dude. We have a world of work that was mostly designed around unencumbered and able-bodied White men. If they had children, they certainly had a wife doing the caregiving. Since the 1970s, women have entered the workforce in droves, yet the essential structure of the workplace has barely changed; if anything it’s worse as its tentacles have now staked claim to our personal time as well with email, Slack, etc. Rather than providing automatic support for caregivers, we have to ask for things (if they exist at all), be it a year off the tenure clock, a place to pump breast milk, or a flexible schedule. And many of us won’t ask, especially if we work in or feel any sort of precarity, because we want to look like team players… like we’re tough enough. The option to stop the tenure clock is way underutilized by parents. And so many of us with disabilities won’t ask for accommodations because we don’t want to be seen as less capable or as a problem. How else could my college’s ADA accommodation coordinator, who has had the job for more than a decade, not have any awareness of chronic unpredictable illnesses (omg, there are DOZENS of them!!!)? How many people at my institution are not set up to do their best work, are burning themselves out, because they are too ashamed or fearful of going through the accommodation process (and after reading horror stories, who can blame them?). If people who have caregiving needs or disabilities and aren’t seeking even the accommodations that do exist, something is systemically broken. And stories like this one, where a woman only sought accommodations once she was finally in a position of power, are shockingly common.
We want to create diverse workplaces by focusing on recruitment, scholarships, creating diversity residencies, improving the interview process, etc., but if we still expect the person to assimilate to the institution — if the institution’s culture is an immovable wall — we will never be an inclusive culture. People who don’t “fit” will burn out and/or leave, and that person is far more likely to be from an underrepresented group. As someone who experienced trauma growing up, I’ve always felt like I needed to shape-shift and change to fit whatever setting or relationship I was in. I think of all the different romantic relationships I had before I got married and what a different person I was in each of them. After a while, both in romantic relationships and with work, I would realize how much of myself I’d sacrificed and end up in obliger rebellion. With my husband, from the beginning, I felt like I could be me. I didn’t have to wear a mask or change myself. I could ask for what I needed. But I’ve never felt that way in a workplace. So I change. And for people who aren’t willing to assimilate or who can’t blend in as easily as I (a White cisgendered woman with no visible disabilities) can, it’s often extremely painful to work in a place that makes you feel you don’t fit. But it shouldn’t have to be that way. Managers should help create environments where we can be our true best selves. People shouldn’t have to silence themselves or inhabit whiteness to be able to thrive in the organization. No one should have to feel hypervisible or invisible because of some aspect of their identity. We should be appreciated for the unique things we bring to the table and for new and challenging ideas we may bring. There should be openness to change from the organization by design; to allow flex and movement as opposed to a rigid brick wall. There should be universal design for work and organizations. What would that look like? How flexible is your organization? How intuitive or perceptible is it? How equitable is it? How approachable is it for someone new? I’ve had the opportunity to look at my organization through the eyes of my colleague in her first academic year as a full-time faculty member (who unlike me asks “why?” and doesn’t just assimilate) and wow is it not any of those things. Ouch.
What could managers do to make libraries more inclusive for all workers? What would universal design for work look like? Does anyone have stories of places that have made an effort to better support their employees as whole people? I know a lot of you have done a lot more thinking and reading about this topic than I have, and I’d love to hear what you think or if you have any readings you’d like to recommend.