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Grieving in the Workplace (and Beyond): The Dreaded Question, “How Are You?”

My amazing husband, Tom DeBlaker, passed away on June 19. I’ve written in this blog about becoming his caregiver after his stroke. Now I am navigating being a widow.

One of the toughest aspects of grieving is being asked an innocent and well-intended question: “How are you?”

I know no one asks this question maliciously. No one is trying to put me on the spot or make me feel inadequate in my expression of grief. Most people who have asked me this question since my husband died know that I just lost my husband, and many of them, in fact, after asking me how I am, immediately follow up with something along the lines of, “Oh, what a terrible question, but I don’t know what else to say.” We are used to asking the question as part of a greeting; it’s a default for us and we have to think deliberately to deviate from it.

I ask struggling people “how are you?” too. Since my husband died, I’ve caught myself asking his mother, brother, and son, “How are you?” I’m talking specifically here about asking the question of people who are grieving, but this question is one that also causes anxiety for folks with disabilities. My husband often struggled to answer the question “how are you?” when he was wracked with pain or frustrated because of the constant challenges his environment presented for him. He wasn’t fine and didn’t want to imply that he was, but he also didn’t want to let loose with a litany of his troubles.

I’m now looking for an alternative to the question. The brilliant Kat Vellos discusses what’s wrong with the question in general—for example, the way it is used socially assumes that a short, to the point answer can be provided—and offers many better alternatives here. What makes Vellos’s suggestions particularly useful is that they are broken down by whether you are communicating by text or in person and by whether you are ready to “listen deeply” or not.

Most people who have asked me “how are you?” since my husband died are friends and family who are genuinely interested in how I am doing. I’ve been responding with “crappy” and “not great” or just a shrug, although I went to a coffee shop today and when the barista asked me how I was, I got choked up and then kind of mumbled, “Oh, you know . . . “ Tom’s mother said she is responding to the question by simply answering, “I am.” She said it’s the only response that feels accurate to her. With the exception of the barista, the people asking me how I am know that I recently lost my husband.

When I do go back to work, I’ll be asked the question by folks who don’t know that my husband died. Simply answering “fine” will work because they will, for the most part, be asking as a form of greeting rather than as an authentic inquiry about my well-being. But “fine” doesn’t feel right to me when I’m not fine, and damn it, it’s ok to not be fine! I could try, “Today is a tough day, but I’ll get through it,” which feels more authentic and is vague enough to—I hope—not invite follow-up questions. There’s also the slightly evasive, “I’m ready for this meeting” or whatever is the reason I’m seeing the person.

I think I’ll pilot “good enough, thanks” the next time someone asks me. It’s short, doesn’t invite conversation I don’t want to have, acknowledges the social function of the question, and is likely true, implying that I am “good enough” to have the meeting or conversation or whatever has brought us together.

I’m going to use Kat Vellos’s list of alternatives to break myself of the habit of asking “how are you?” Some of the suggestions she offers that I like are “It’s good to hear your voice” (for a phone call) and “It’s good to see you” for a face-to-face meeting.

Caregiving and Being Unprofessional

My husband has a major surgery this morning. The surgery itself is scary and the recovery will be long and painful. He needs this surgery because of a brain infection. We are not looking forward to it and we’re not sure how long and how painful the recovery will be, only that it will certainly be longer and more painful that we would like.

Being my husband’s caregiver often requires me to live with uncertainty and uncomfortable feelings. The uncertainty makes it difficult to plan for the future—even next week—which can impact my ability to meet deadlines or show up to meetings. The uncomfortable feelings can make me impatient, irritable, unfocused, and weepy.

The person I’ve just described—someone who can’t meet deadlines, cancels meetings at the last minute, and is impatient, irritable, unfocused, and weepy—sounds like a terrible employee or student, don’t they? The very definition of “unprofessional.”

When I’ve had employees or students who exhibited these traits, I’ve sometimes thought that they need to develop time management skills, or they need more accountability, or they need to learn how to manage their emotions. Now that I’m the person in question, I can see that while these assumptions seem reasonable, they are completely off base. My time management skills are great and I have plenty of accountability. I think the emotions I’m experiencing are completely normal given the circumstances. There is nothing “wrong” with me. I don’t need more or different strategies; the fact is, I am living in a difficult situation and struggling with it is normal and healthy.

My assumptions about what causes “unprofessional” behavior were not just inaccurate, but they sometimes kept me from being the faculty member or supervisor I want to be. I thought, “Well, I’m not going to put in more effort than they are. If they don’t care about the assignment, I’m not going to knock myself out giving detailed feedback.” I was sometimes dismissive or less invested in their success.

As a professor and supervisor, I want to more consistently do the following:

  1. Ask the person in question what is behind the behaviors I’m seeing rather than assuming it is laziness, lack of discipline, disengagement, unprofessionalism, and all the other negative traits that I now see are euphemisms for “someone who has a complicated life that I don’t understand and actually have no right to the details of.” And if they don’t want to talk about it, accept that it’s really none of my business.
  2. Put my energy into supporting the person rather than devising “appropriate consequences.”
  3. Find ways to maintain boundaries around my own time, energy, and other resources that don’t hinge on assumptions about what drives the behavior of others.

Starting Points for Learning More about Disability and Accessibility

This week and next week my posts will be a little shorter than usual because of two activities that can take up a lot of time and energy for disabled folks and their caregivers: (1) arguing with doctors and insurance companies and (2) undergoing medical treatment. This week arguing is the big activity and next week it’s surgery. Ooops, did I say arguing? I meant advocating.

So far this week, I’ve logged about two hours each day arguing or doing research to support my arguments that my husband needs a particular appointment, medication, or treatment. A lot of it has been around getting my husband an orientation for his new motorized wheelchair, which we were told would automatically happen when the wheelchair was delivered. Instead, the wheelchair was dropped off, we were handed a manual, the headrest was adjusted, and that was it. The wheelchair is a very complicated machine and the manual is very dense. My husband’s disabilities make it hard for him to read. We’ve figured out a few of the features, mostly by trial and error, but I’m sure there are things we haven’t yet figured out. An ongoing issue is adjusting the foot rests, which are high enough that my husband accidentally smashed one into the oven door, breaking the door into a million little pebbles of glass. We obviously need the orientation!

For this week’s shorter post, I am sharing some of my favorite sources for folks who want to learn more about disability and accessibility in the classroom (and beyond). There are many brilliant people writing about disability these days (yay!) and my aim here is not to mention all of them. The sources I’m highlighting here are good ones, I think, for folks who are newish to thinking about disability and accessibility—in other words, these are some good starting points.

On the less scholarly side of things, here are my favorites:

On the more scholarly side of things, here are a few articles and books:

And some authors I recommend, in addition to the authors of the works I’ve noted above:

Whose Knowledge of Disability Has Value?

Last week I chronicled the five-year process I had to go through to get medical documentation of my disability. I mentioned that I was dumbfounded that after going to my main eye doctor for a few years and finally throwing a fit, he mentioned that his practice had a low vision specialist that he could send me to.

I want to linger on this point today for a couple of reasons. First, it illustrates how much self-advocacy disabled folks often have to engage in just to get documentation of their disability. Second, it demonstrates how little many medical professionals know about the conditions disabled folks struggle with; and yet, the common requirement for a doctor’s documentation of a disability assumes that the person experiencing the disability has no knowledge of value about their disability. Only a medical professional’s knowledge of the disability has value.

Until the moment my doctor mentioned a low vision specialist, I didn’t know what “low vision” was or that there was such a thing as a “low vision specialist.” Despite not knowing the term low vision, I knew that I was having trouble driving, reading, navigating spaces, and more. I had chronicled on social media many of my mishaps. Everyone who interacted with me regularly knew I was struggling with some sort of debilitating vision issue. But none of that mattered in my pursuit of the documentation I needed to get accommodations at work.

I wondered for a long time why none of the eight doctors I was seeing to try to figure out what was wrong with my eyes had mentioned low vision or a low vision specialist to me sooner. I think part of the problem is that each doctor only notices what they specialize in, and I think another part of the problem is that “low vision specialists” treat people like me—the problematic patients, the cases that defy an obvious fix, the situations in which there might not be a neat and tidy diagnosis. Many disabled people have conditions like mine that are difficult to diagnose—fibromyalgia, for example, or lupus, or Lyme disease—and will need to see multiple doctors, many of whom will probably doubt their reports of what they are experiencing, to finally get the documentation that will have meaning at work or at school.

It turns out my husband is also one of those problematic patients. After his stroke, he was diagnosed with homonymous hemianopsia, which means he only sees the right half of the visual field out of each eye. The ophthalmologist who diagnosed it told us there was nothing that could be done. When I asked for a referral to the low vision specialist (my insurance only covers low vision specialists with a referral—and then charges a copay twice that of the usual copay), the ophthalmologist said, “Yes, but there’s nothing that can be done.”

Low vision specialists, unlike other eye doctors, focus on helping patients make the most of the vision they do have, which often involves “hack”-type strategies, such as, in my case, using a white cutting board for foods that are colorful and a colored cutting board for foods that are white. Because eye fatigue is a significant factor for me, my low vision specialist has worked a lot with me on strategies for reducing eye fatigue. One thing my low vision specialist has done that no other doctor did is to simply believe me when I told her I was having trouble seeing.

Our doctors doubt us. Our institutions doubt us. And then even with the documentation, our colleagues or professors or bosses doubt us. I am asked regularly at work if I really need the accommodations I have asked for.

I have a very simple suggestion for improving this situation in both academia and workplaces: consider the disabled person’s experience and expertise on their own situation to have value. Allow the disabled person to document their own experience. Consider the disabled person’s journal of their experience to be documentation. I was no less disabled before my diagnosis than after, and I could have easily provided documentation of my disability through journals and social media posts (my Facebook friends probably became very tired of me posting pictures of signs I couldn’t read because of lack of contrast), but my employer did not consider me disabled until a doctor said I was. My experience of having been disabled for five years had no value at all in my quest for accommodations.

We can do better.

How Hard Is It To Get Documentation of a Disability?

It does not sound unreasonable to ask folks to provide documentation that they have a disability, but my own experience is a great example of how challenging it can be to fulfil that seemingly simple requirement.

I’ve been near-sighted since I was a kid, first getting glasses in the fourth grade, although I had been having trouble reading the chalkboard in school for at least a year or two before that. My near-sightedness got steadily worse, but was always correctable with glasses. I first began noticing that my vision problems, even with glasses, were disrupting my ability to work and participate in other activities, like driving and reading, in 2009. My eyes seemed to always hurt and on days when I had read or used my computer a lot, they would start throbbing painfully around midday and I would often see double for the last few hours of the day. I compensated by napping, which gave my eyes a break, and closing one eye while cooking and reading in the evening.

At a regular appointment to have my vision checked, I mentioned the throbbing and double-vision and the doctor told me to get more sleep. He said what I was describing was probably age-related and that I might need bifocals soon. Later that year, I drove through a tunnel and had the terrifying experience of not being able to see at all from the moment I entered it. Traffic was moving at 60 miles an hour and I wouldn’t have been able to see to pull over anyway, so I just kept going. When I got where I was going and told people what had happened, no one seemed overly alarmed and I felt silly for being so dramatic about the experience. I stopped driving routes that required tunnels and at night. I read less.

By 2012, my eyes were throbbing and painful all the time and I was no longer able to tolerate contact lenses. By this time, I had seen an ophthalmologist once a year for three years and nothing beyond typical age-related issues was identified. The ophthalmologist seemed to think my vision problems were nothing out of the ordinary, so I began to feel self-conscious about bringing them up with others.

By 2014, I was afraid to drive because I was having a hard time distinguishing between the road, the sidewalk, and the sky if it wasn’t perfectly blue. Driving down dirt roads was terrifying because I couldn’t distinguish between what was road and what wasn’t. I had a few dramatic trips off sidewalks while walking because I didn’t see that the level changed. However, nobody that I shared these experiences with seemed to think it was anything other than me being a bad driver (or a bad walker). I wondered if everyone had trouble seeing and was just faking it. I continued driving my daughter to school and myself to work, although I timed my trips to be during times when the roads were less crowded. I didn’t drive unless it was bright and sunny out. I drove slowly.

My non-driving incidents were becoming more frequent. At conferences, I began to have difficulty finding meeting rooms. On the first day of classes, I couldn’t find my classrooms. In presentations, I couldn’t read the slides. I walked into walls, fell down stairs, tripped on the sidewalk in my neighborhood regularly. At work, I sat in my office, which was an interior office with no windows, unable to read or use my computer and panicked. In classrooms, I walked into walls, wrote on a wall thinking it was a whiteboard, and lost my books when they blended in with the desk I was using.

Between 2014 and 2015, I saw eight different eye doctors, most of them more than once, trying to get a diagnosis. None of them found anything that in and of itself explained what I was experiencing, but some small bits of the puzzle begin falling into place: I had severe dry eyes, severe astigmatism, an auto-immune reaction to my own eyeballs, severe loss of eye elasticity, minor cataracts. Because each doctor only saw their piece of the puzzle, none of them thought I should be having the difficulties I reported with driving, reading, and simply navigating my world. More than once I was told I just wasn’t trying hard enough. None of these issues constituted a disability.

Near the end of 2015, I was having regular double vision that no one had diagnosed. My main eye doctor kept telling me he didn’t see any reason for the double vision and heavily implied that I was making it up to get attention—an idea he actually floated with my husband. I had had enough of being doubted and threw a good old-fashioned fit, which finally prompted him to say, “Well, I could send you to our low vision specialist.”

Wait, what?! I had never heard of low vision, much less a low vision specialist. Why, after years of visits, had no doctor ever mentioned low vision or a low vision specialist to me? (I will talk more about this in a later post.)

In December 2015, I saw the low vision specialist, who believed everything I said. She added two more pieces to my diagnoses: low contrast sensitivity and hypertropia. Once I had those two pieces in writing, I had the documentation I needed to get accommodations at work, or to get the process started. It was another three months before the HR representative, my supervisor, and I were actually able to sit down and talk about accommodations, and then, as I’ve written about previously, it took a long time to actually get the accommodations in place.

It took me six years and over twenty doctors’ visits to get a diagnosis. Even with my good health insurance, I spent over $1000 on co-pays. A more serious cost of getting my diagnosis was the time to get referrals and then go to see the different specialists, who were scattered across the metro area. Researching routes to take that didn’t involve construction, tunnels, and other driving hazards took time and caused a lot of anxiety. And then, ironically, many of the offices had signage I couldn’t read.

Now imagine the additional hurdles a person without health insurance, or a person of color, or a person with other challenges would have to face in meeting the seemingly simple requirement of documenting their disability.

Given how difficult it can be to simply secure that documentation, I’d like to see all workplaces and classrooms adopt the practices I mentioned last week to make spaces more accessible.

8 Things You Can Do to Make Your Workplace or Class More Accessible

Because disability is not stable, making a workplace or a classroom accessible is not a “one and done” endeavor. The concept of “accommodations” certainly implies that accessibility is about making one or two tweaks to an environment and then moving on, but that idea is based on an ableist idea of disability as stable.

Here are some specific actions you can take to make a workplace or classroom more accessible:

  1. Regularly give people the opportunity to tell you how you can make the workplace/classroom more accessible. Ask everyone, not just the folks you know are disabled. This is for a couple of reasons: first, people with disabilities may not have disclosed them to you for many reasons (I’ll write more about this at some point, but for now, you can check out this), and second, disability isn’t stable, so even if you’ve had this conversation before, the accommodations you may have in place may not be the ones a person needs now. People without disabilities also benefit from these regular conversations, as many of the so-called accommodations for disabled people actually make a space or experience more accessible for everyone. For example, although my hearing is fine, I often find subtitles helpful for when I space out for a moment during a film, my dogs are barking during a critical moment, or I am hearing an accent unfamiliar to me.  
  2. If you use a form for people to RSVP to events, include a question about what you can do to make the event accessible to the person RSVPing. Again, this will benefit everything attending. When I’ve asked this question, I’ve often received great ideas about how to improve the event that go way beyond accommodating for disability, such as ways to make introverts feel more comfortable speaking to the group—or even better, ways to respect introverts’ desire to not have to speak to the group.
  3. If you meet with students or employees individually on a regular basis, build into your meetings a question about what you can do to make the workplace or classroom more accessible to them. Again, this will benefit everyone, not just the folks with disabilities.
  4. When people do ask for an accommodation, don’t ask why they need it or if they really need it. Don’t ask if they’ve tried that thing you read about last week or the thing a friend of yours tried that was super helpful. Just do your best to offer the accommodation. If you can’t provide the accommodation yourself, reach out to HR or the disabilities services center for help.
  5. Don’t worry about the name of the disability being accommodated for. If someone says they need wide and clear walkways but they appear able-bodied to you, don’t worry about it. If someone says they need large print handouts but they appear to you to have normal vision, don’t worry about it. For one thing, no one is required to tell you what their disability is. For another, disabilities occur on a spectrum and your ideas about what a mobility challenge looks like may be based on faulty assumptions.
  6. If you think you can’t provide the accommodation, see if you actually can. For example, my students last semester asked for a break during our 75 minute class. I typically run out of time in my classes, so the idea of giving up even 5 minutes “to do nothing” felt impossible. But I tried it. And guess what? With the break, folks were more engaged and we got just as much done. Yes, people came back late from the break sometimes. It was messy. But you know what? It was messy without the break, too, only I didn’t know it because it wasn’t messy for me. But my goal as a teacher is to make things less messy for learners, not for me.
  7. Recognize that folks may have a hard time identifying what they need for accessibility. As I said in my last post, I found myself struggling to identify what my daughter needed most of the time she was in high school, regularly asking for what would have helped in the last situation rather than in the current situation. It can be helpful to adopt a spirit of problem-solving or trial-and-error.
  8.  Model identifying and asking for the support you need so that folks who don’t know how to do it can learn. Talk explicitly about how you have asked for changes to be made in workplaces or classrooms. This provides guidance for other folks and also normalizes asking for support. Whether or not you are disabled, you have probably at some point asked a boss, colleague, professor, or classmate to do something differently to make success more possible for you—talk about it. You might talk about how you asked someone to reschedule a meeting for a time when you are more alert, or how you requested that the IT department deviate from the standard issue software or laptop to make your computer better suited to you, or the time you suggested a different timeline for a project to avoid being stretched too thin.

All of these suggestions boil down to acknowledging that one-size-does-not-fit-all, inviting feedback, and then trying to act on the feedback. Ideally, you are a professor or workplace supervisor because you want people to succeed, so having these conversations about what folks need to attain success should align well already with what you’re doing.

Identifying Accommodations Is Harder than You Think

I’ve previously blogged about the access fatigue that comes along with asking for accommodations. Before you can even ask for accommodations, though, you need to know what to ask for, and that’s more difficult than it may seem.

With my low vision, for example, it may seem obvious that I need good lighting, but what exactly is good lighting? It’s not as simple as buying a good bright lamp. Most of the time, I need bright, preferably natural, light, with no shadows. But if my eyes have been working a lot, like if I’ve been reading or staring at a screen for several hours, that same light can hurt my eyes.

The lighting is part of what I need, but it is not, by itself, enough. I also need to be able to give my eyes frequent breaks and to limit the amount of work my eyes have to do in a day. “Work,” for my eyes, is anything that requires them to focus, including reading, using a computer, being in a remote meeting, and looking where I’m going when I am walking. Back when I was working on campus, if I had several meetings in different buildings, my eyes would be very tired by midday from me having to look where I was walking. When my eyes are tired, they don’t focus, making reading impossible.

I do not need large print to read, but I do need a serif font, and high contrast between the print and the background. Even with the right font and contrast, I often can’t tell the difference between the letters B, E, and the number 8; the letter Z and the number 2;  the letters F, K, P, R, and sometimes A; and the letters C, G, Q, O, and sometimes D. (Lowercase letters are equally confusing but in different ways. I recently realized that I had been misreading words spray-painted on a junction box I pass everyday while walking the dogs: I had misread “don’t make me dream alone” as “don’t make mr dream alone.” For over a year, I’ve wondered about who “mr” is and why he has to dream alone. I just realized my mistake earlier this week.)

What all of this means is that on a day when I have meetings in different buildings on campus, the light in my office that was perfect yesterday may be too bright today. Or reading for five hours may be doable one day but reading for even one hour on a day when I have multiple online meetings may not be possible. This fluctuation in what I need often makes asking for accommodations in advance of a situation difficult.

When students register with the disabilities services office, they need to state what accommodations they want from their professors. Without knowing the exact conditions they’ll be asked to work in, this can be challenging. Even if a student does know the exact conditions, their ability to function well under those conditions even with multiple accommodations may be impacted by other factors, such as what else they’ve done that day, how hydrated they are, the time of day, the weather, and more.

My daughter needed accommodations in high school, and despite extremely supportive teachers and staff, it felt like we were never requesting the right accommodations at the right time. She would find herself floundering in a particular situation, use the accommodations she was allowed, and continue floundering. After the situation was over, we would meet with her teachers to identify what would have helped. She would then ask for those new accommodations in the next situation, but still flounder because those accommodations were designed around the last situation, not the current one. We were always coming up with the accommodations that would have helped last time not next time.

I have a long-time employee in the Writing Center with a traumatic brain injury. She and I meet regularly to figure out what’s working and what isn’t. What worked in the past doesn’t always work in the present. For example, at times she’s needed to do most of her work early in the week, and at other times, she’s needed to do it only in the afternoons. We both have to be willing to tinker with existing processes, pilot new ones, and be uncomfortable. It’s frustrating for both of us, especially because we know that even when we find something that works, it’s only a temporary fix and there is no permanent one.

Despite that frustration, I think accepting that there is no permanent fix is what’s necessary because disabilities aren’t stable. Unfortunately, institutions, including academia, like stability. They assume stability works for everyone and when it doesn’t, that person is identified as the problem rather than the assumption of stability working for everyone being identified as the problem. The accommodations-for-disabilities system is premised on the ableist assumption that disability is a stable concept.  

Universal Design for Learning can help. Understanding disability as fluid can help. Identifying and pushing back against ableist assumptions can help.

Rethinking My Use of the Word Microaggression

I have used the term microaggression in the last few posts to describe behaviors that indirectly convey a person’s derogatory thoughts about disabled people, such as when I am asked by a colleague who noticed that my class was moved to a different room if I really need special lighting in my classrooms.

I was recently reminded that Ibram X. Kendi, author of How to Be an Anti-Racist, does not use the term “microaggression.” He explains

I do not use “microaggression” anymore. I detest the post-racial platform that supported its sudden popularity. I detest its component parts—“micro” and “aggression.” A persistent daily low hum of racist abuse is not minor. I use the term “abuse” because aggression is not as exacting a term. Abuse accurately describes the action and its effects on people: distress, anger, worry, depression, anxiety, pain, fatigue, and suicide. What other people call racial microaggressions I call racist abuse. And I call the zero-tolerance policies preventing and punishing these abusers what they are: antiracist. Only racists shy away from the R-word—racism is steeped in denial.

How to Be An Anti-Racist

I heard him talk today at “A Conversation with Professor Ibram X. Kendi on Being an Antiracist,” an event sponsored by MSU Denver’s Center for Multicultural Excellence and Inclusion, about this and he made the point that the concept of microaggression takes things in isolation, but the person they are directed at experiences them as cumulative. The impact of each microaggression is compounded by all the past microaggressions they have experienced.

I have been thinking about Kendi’s point about calling something what it is in relation to the access fatigue that Annika Konrad identifies and that I have talked about experiencing. When I am asked if I really need a classroom with different lighting, I don’t experience “a microaggression,” I experience

  • someone doubting my integrity
  • someone questioning whether I have fraudulently secured documentation of my disability
  • someone wondering if I am exploiting my disability to get special treatment
  • someone judging me as “causing trouble”
  • someone resenting me for making their job more difficult

I don’t experience some of these—I experience all of them at once. When the person doing these things is a colleague, which is often the case, I also experience being disrespected by a peer; even worse is when the person has authority over me, such as a department chair or dean. Although I understand the ableist assumptions underpinning the “microaggression” as being institutionalized and transcending the particular interaction, in the moment, it feels personal and I feel the weight of having to defend myself, my need for a classroom with different lighting, and the needs of all other disabled people on campus to be taken seriously.

Kendi’s elaboration in today’s conversation on his reasons for not using the term microaggression made me realize that I have used the term uncritically and that the people who benefit from that are the people who perpetrate the ableist abuse. I do find the term microaggression helpful because it is a convenient shorthand for a long list of problematic behaviors that are typically seen as so small that no one should be held accountable, but the term does not adequately convey the cumulative nature of the effect of each individual microaggression.

Moving forward, I am going to try to use terminology that more effectively articulates the effect of the behavior I am commenting on.  

Academic Ableism: The Expectation that Crips Be More Thankful

A few nights ago, I watched the documentary Crip Camp: A Disability Revolution. The 2020 film follows some disabled teenagers who attended Camp Jened, a camp for disabled kids, together in the ‘70s as they grow up and become disabilities rights activists. Near the end of the film, disability rights activist Judy Heumann, who lost the use of her legs from polio when she was a toddler,  says, “I’m very tired of being thankful for accessible toilets. If I have to be thankful for an accessible bathroom, when am I ever gonna be equal in the community?”

That quotation captures the ableist assumption that disabled folks should be more thankful than nondisabled folks for exactly the same level of access. That is not equity. That is an ableist assumption that access for able-bodied folks is normal and should be expected and even taken for granted, while access for disabled folks is above-and-beyond and disabled folks should grovel in thanks on a regular basis. It ignores the fact that equal access is mandated by the law, but even more importantly, it obscures the truth that disabled folks are humans with the same rights, desires, hopes, and dreams as nondisabled folks.

I talked last week about my own access fatigue and how it contributes to my decision to sometimes not ask for accommodations. Another factor that contributes to my access fatigue is the expectation that I should be thankful for any accommodations I get. I am thankful—for the efforts of people like Heumann and other disability rights activists who fought to get people like me the same kind of access non-disabled folks take for granted. Do I need to also be more thankful for signs I can read than anyone else is for readable signs? Do I need to also be more thankful for presentation slides that use a high contrast color scheme than anyone else in the room is for being able to make out the words on the slides? Do I need to also be more thankful for well-marked curbs and steps than anyone else is for being able to travel around the campus without fear of tripping?

Judging by the attitudes of many people in academia, the answer to these questions is yes. Every semester, I hear faculty colleagues say things like, “I provided the accommodation to the student and didn’t even get a thank you.” These same colleagues don’t expect their able-bodied students to be thankful for desks or exams or films they can access, but they do expect their disabled students to be thankful for desks that they can navigate to in a wheelchair, exams with extended time allowed, and films with closed-captions. These faculty see students’ disabilities as a burden on them, the professors, that must be acknowledged and atoned for by the students. For accommodations that must be given repeatedly, like extended time on exams, those faculty expect to be thanked every time an exam is given. It wears a person down, this regularly expected participation in maintaining an ableist commonplace.

The fact is, most of the time my own students do thank me for providing accommodations, and I suspect this is because they’ve learned that if they don’t, accommodations will be harder to come by in the future. When students do thank me, I tell them that providing accommodations is literally the bare minimum a professor can do to comply with the law and I apologize to them that they feel the need to thank anyone for that. (In the article I mentioned last week, “Access Fatigue: The Rhetorical Work of Disability in Everyday Life,” Annika Konrad identifies as one of the themes in her data the emotional labor of having to regularly show appreciation for access.)

Access Fatigue: Why I Don’t Consistently Ask for Accommodations

I am deeply grateful to Annika Konrad for naming the exhaustion I feel whenever I have to explain to someone what I need in order to access a space or content or an activity: access fatigue. In her brilliant College English article, “Access Fatigue: The Rhetorical Work of Disability in Everyday Life,” she uses the term to describe the work disabled people must constantly do to educate others about their disabilities and needs, to enable others to feel helpful even when they are doing the very barest minimum to make something accessible and/or doing it very grouchily, and to balance the costs of asking for access with the benefits of actually getting it.

Here are just a few stories to illustrate why I feel access fatigue on my campus:

  • Even though I have filed all the proper paperwork with HR to be in an office with natural light, I had to fight for three years to get an office with natural light, and then, I was told that I was “stealing” that office from someone else.
  • In the years before I got the office with natural light, HR told me I could ask my department to buy me better lighting for my office. When I made that request, I was asked did I really need the special lighting, wasn’t it something I could purchase myself, and did I realize that it wasn’t HR paying for it but the department itself and the department budget was very tight? All this over a $35 lamp. Then I still had to fight for six months for the lamp to be ordered, and when it finally arrived, the person who brought it to my office slammed it down on my desk and said, “Here’s your special lamp.”
  • Despite that HR paperwork that is supposed to guarantee that I teach in well-lit classrooms, every semester, I have to fight to make it happen. Every semester and for every class. And because my disability isn’t apparent, nearly every semester I am asked whether I really need to have my classes moved. (Like I would go through this exhausting process if I didn’t have to?!)

Notice the theme? I had to fight for each accommodation, either for prolonged periods or over and over. Not once did the person hearing my request respond with, “Oh, I’d be happy to help.” Every one of them let me know in sometimes explicit ways and other times through microaggressions, that my request was a pain in their ass. These are the experiences of a white, tenured faculty member, so I can only imagine how much more exhausting it is for students who ask for accommodations from faculty, given the power imbalances.

My own experience of living with impaired vision is full of damned-if-I-do-and-damned-if-I-don’t moments. If I do mention it, because my disability is not apparent to most people, it can appear that I am “just looking for attention” or being “high maintenance.” I’ve been accused of “not trying hard enough to see,” of being “lazy,” of “just trying to make a point.” On the other hand, if I don’t mention it, I can find myself in awkward or even dangerous situations, like the time I ended up locked in a stairwell because the sign saying that the door would automatically lock behind me and there was no cell access in the stairwell was yellow text on a white background, or the many, many times I’ve been in meetings where I can’t read the presenter’s slides because there isn’t enough contrast.

Many conference venues, hotels, and office buildings indicate room numbers in some artistic way, such as engraving the number into a piece of metal or wood or using earth tones for both the number and the background. I appreciate that they are lovely, but the numbers are invisible to me. Many times, I’ve stood in front of a room and asked someone entering it what the room number is. I often get a very unhelpful response. People have said to me, “The number is right there,” pointing to the number but never actually telling me what it is. Or people will suggest in unkind ways that I haven’t tried looking: “Look around,” “try looking,” or “read the sign.” Then there are the people who pretend they didn’t hear me.

All of the responses I’ve noted, from being told I was “stealing” an office from someone else to the sarcastic replies to my question about a room number, reveal the ableist assumption that I am making unreasonable demands when I ask for accommodations. The responses are underpinned by a belief that there is nothing wrong with the poorly lit office or the low-contrast sign—that the problem is with me and I should just suck it up.

Sometimes people do respond kindly and wonderfully. After I fell down a flight of concrete steps on my campus because I didn’t see them and their edges weren’t marked in any way, I called our campus facilities office to ask them to mark the steps. The woman who answered the phone spent the first few minutes of our call making sure I wasn’t hurt badly and apologizing that the steps weren’t better marked. I’ve had complete strangers let me hold on to them while I walked down a street or sidewalk that wasn’t well lit at night. I have wonderful friends and family who point out steps, uneven pavement, and other low-contrast obstacles when we walk or hike together. My students are often much more conscientious than my colleagues, asking me before they do presentations if their slides have enough contrast or offering to reprint a paper that was printed at the end of an ink cartridge’s life.

Despite the generous responses I do sometimes get to my requests for accommodations, when I am feeling the least bit depleted, I often decide not to ask for what I need. Konrad notes in her article that “people with disabilities are often encouraged to advocate for their own access without consideration for the mental and emotional labor required to do so” (180). The toll of that mental and emotional labor adds up and my desire to avoid it often causes me to forgo an experience.

Many conference registration forms now ask if registrants will need accommodations. While I appreciate being asked, most of the time I don’t ask for any these days because what I really need—well-marked room numbers and bathrooms, for example, and presentation slides that are high contrast and with a large font—can’t be controlled by the conference organizers. When I have asked for slides to be high contrast and with a large font, as far as I can tell, my request was ignored. (Many presenters mumble something at the beginning of their presentations along the lines of, “I hope everyone can see this ok,” which is absolutely unhelpful—although not as unhelpful as saying, “I don’t need a microphone, I’ll just use my teacher voice.”) And that’s perhaps the most exhausting aspect of asking for accommodations: even more frustrating than having someone argue that I don’t really need the accommodation I’ve asked for or the suggestion that I’m not really trying to see is the ignoring of a request that was invited. While the initial invitation to ask for accommodations may come from a place of generosity, the ignoring of the request amounts to gaslighting. I find myself wondering when a request is ignored, Did I imagine making the request? Am I invisible? Am I wanted here?