Talk about Grief (It Will Be Messy)

I’ve posted recently about some of the dysfunctional ways we respond to grief and loss, such as asking “How are you?” with the expectation of a brief and positive answer and measuring and scoring grief. Ira Glass notes in the first segment of the recent This American Life show devoted to grief that because of COVID, a very high number of Americans are now grieving. We would all benefit from learning how to talk about grief better.

I think Americans have a very low ability collectively to sit with uncomfortable feelings such as grief. We try to glibly glide right past them or encourage people to “get over it” quickly. We tell ourselves it’s rude or awkward to bring up grief in conversation, so we don’t, but the truth is that by pretending grief isn’t happening, we make it that much harder to talk about grief and we imply that people who are grieving are a problem and they need to hurry up and “get over it” so the rest of us won’t feel so uncomfortable.

In the past I have told myself that I am doing a grieving person a favor by glossing over their grief. I have told myself that they are surely not interested in sharing their grief with their colleague or casual acquaintance or boss or whatever I am to them. Perhaps they weren’t, but what I realize now is that it is not up to me to decide what they are interested in. If somebody’s grief makes me uncomfortable, that’s my problem. My job as someone who cares about a grieving person is to be willing to be uncomfortable in order to offer them comfort.

On that note, today I want to focus on some of the responses I have deeply appreciated:

  1. Rambling, inarticulate voice messages from folks that were incredibly touching because they were rambling and inarticulate. The very act of reaching out when you don’t know what to say shows that you recognize the gravity of the situation and you’re willing to risk being awkward to acknowledge someone else’s pain. It is a selfless act in which someone lets go of the ruse that they have answers. Through its own awkwardness, it sets an expectation for an awkward response.
  2. Cards, notes, and emails in which people shared a specific memory of my husband or an aspect of him they would particularly miss. To me, this is so much more meaningful than offering advice or an inspirational quote because it is personalized and indicates an understanding that my grief over my loss of my husband is different from any other grief. Even just one sentence that is personalized—one friend who didn’t know my husband well simply wrote “I remember him as a genial presence at your dinner parties”—comforts me by testifying to the mark my husband left on the world.
  3. Explicit recognition that it just sucks that my husband is gone. The acknowledgment of my loss and the high suck-factor without any attempt to identify a bright side recognizes that negative emotions are completely normal and conveys that I will not be judged for being awkward or teary or morose.

All of these responses demonstrate that another human is trying to connect with me, trying to comfort me, and recognizing that there really is no comfort possible right now, that things are just going to suck for a while and then after a while, they will suck a little bit less. To my mind, there is no one “right” thing to say—any response to grief that acknowledges that grief is normal and that the pain is real is a “right” response. These responses I’ve highlighted resist the social expectation to keep conversation light, positive, and “fun.” (I’ll post at some point in the future about why the concept of “fun” often makes me cringe.)

And while I think there are some wrong things to say (examples I’ve heard are “you’re still sad?” and “how long do you think you’ll be like this?”, which imply that because my grief is a downer for someone else, I need to get over it), even those can be mitigated with a heartfelt, “Oh, that wasn’t what I meant, let me try again. This is really hard to talk about for me.” In fact, asking for a do-over is a strategy I appreciate because it acknowledges the dysfunction embedded in our default ways of dealing with negative emotions and it immediately aims to repair the harm done by the original statement.

So please, be awkward. Say the wrong thing and then catch yourself. Allow yourself to not know what to say and talk anyway. Acknowledge grief in whatever uncomfortable, messy, honest way you can.

Measuring, Scoring, + Ranking Grief

Neoliberalism tends to boil everything down to a number at some level. We measure, we compare, we assess, we score, we set SMART goals. We have all sorts of platitudes about how beneficial this quantification is: what gets measured gets improved, without goals we’ll never grow, how can you know you’re doing better now if you didn’t measure where you started, etc. The underlying premise of these platitudes is that we must always be improving or growing, which to our neoliberalized ears sounds normal and even common sensical.

I will in a later post talk about what is wrong with the assumptions themselves, but for now I want to focus on how this impulse to measure even impacts our expectations and responses to grief.

Since my husband died, I’ve noticed many examples of the impulse to measure applied to grief:

  • Some people have told me I’m “doing well,” which I think they meant as a compliment, but it implies a measuring stick by which I could be doing “not well” or “really well.”  This assumes a baseline expectation of what “well” looks like. Someone today emailed me to find out if I am doing “better” this week than I was last week (they hoped I was). All of this reminds me of the ratings my university gives for performance: exceeds expectations, meets expectations, or does not meet expectations. I suppose if I am deemed by others to be “doing well,” I am either meeting or exceeding expectations. The implication is that other people’s measure of how I’m doing should matter to me. (For the record, it does not.)
  • Then there’s the grief contest, in which someone compares my grief to theirs. People have suggested that my grief over my husband must be more or less than grief they have experienced when they lost a parent, child, sibling, friend, or pet. Another version of this is the comparison of one type of loss to another; for example, someone asked me which was worse, my divorce or being widowed, and I have to wonder why it matters to the person who asked.
  • A journal marketed to widows invited me to rate how well I am coping with my husband’s death and identify areas for “improvement.” I responded by throwing the journal across the room and cursing at it, which probably brings my coping score down significantly. The implication of rating my grief and identifying where I can improve is that I should strive to be a “better griever” today than I was yesterday—that there should be a steady upward trajectory in my coping skills.  

All of these impulses to measure grief assume at some level that grieving is a phase that will end and that if we do it well, we can get to the finish line faster. Even the grief contest question about whether a divorce or being widowed is worse hinges on this logic—if being widowed is worse, then we can figure it will take longer to get to the finish line for being widowed than for being divorced.

While I find all of these impulses to measure grief problematic, I don’t fault the individuals I’ve alluded to here. I am sure that before my husband died, I compared griefs and tried to measure grief, despite having lost my mother, several good friends and colleagues, and beloved pets. Experiencing grief doesn’t necessarily equip us to resist the neoliberal air we breathe. When something feels common sensical, we do it without thinking, and until my husband died, I responded to grief in others without thinking.

I’ll talk in a later post about the intersections of disabilities studies and grief I am finding; for now, I’ll simply note that all of the “measuring grief” comments I’ve heard echo “measuring disability” comments I’ve heard. I’ve been complimented for handling my vision impairments well, I’ve been asked do I think losing my hearing would be more or less difficult than losing my vision, and I’ve been asked to score my vision impairment coping. Whether it’s focused on disability or grief, this urge to measure and assess rests on a foundation of ableist assumptions about what’s “normal.” For example, the question about which disability or grief is worse suggests that “normal” is no disability or grief and that some forms of disability or grief are closer or further from “normal.”

My experience of the grief I’ve felt in the month since my husband died is that how it goes one day is no indication of how it will go the next. Things I can handle one day are not necessarily things I can handle the next day. Scoring myself on how I handle things or aiming to handle things better today than I did yesterday does not feel useful or helpful in any way. What does feel useful or helpful is simply allowing my grief to unfold in whatever way it needs to on a particular day. That means I spent more time in bed yesterday and the day before than I did on any day last week. It also means thinking about grieving not as a phase I am going through but as a part of my life moving forward. There is no finish line, just a long winding path into the distance.

Company/Organizational Policies and Not Being a Jerk

When I became Writing Center Director in 2008, I was amazed by the high number of “no shows” – that is, students who didn’t show up for their appointments. I worked with the staff to put some practices into place, such as calling students to remind them of their appointments the day before, to reduce the no show rate, and while we were able to bring the rate down, our no show rate remained in the double digits. A few years later, when we adopted an online appointment system, we implemented the pre-loaded script that automatically blocked anyone from making an appointment after three no shows. That had no noticeable effect on our no show rate, either, but it made me feel like I was “doing something.”

A couple years ago, I decided to try a new tactic. Instead of blocking people who have three no shows, I set up our system to send an email to anyone who was a no show that basically says, “Hey, we noticed you missed an appointment. Everything ok?” No stern reminders of our three-no-shows-and-you’re-out policy, no guilt trips. Our no show rate remains unchanged, but now I regularly get emails from students who missed an appointment thanking me for checking in and sometimes giving me a glimpse into the complicated lives they lead that caused them to miss an appointment: childcare fell through, they were up late because of a chronic health condition and overslept, they got called into work unexpectedly, their car got stolen, their doctor changed their medication and adjusting to it has made life more difficult. Sometimes the information they give me provides an opportunity for me to refer them to offices on campus that can help; sometimes all I can do is convey my sympathy for their situation.

Here’s the takeaway: I can be a jerk and block them from making future appointments or I can be compassionate and connect with them as a human, but the no show rate will likely remain the same. I prefer to be compassionate and connect as a human. There is no benefit to the Writing Center, me, or the student if I block a student trying to adjust to a new medication from making appointments.

Earlier this week, the company that we rented my husband’s CPAP machine from came to the house to collect his CPAP machine. They did not know he had passed away—all they knew is that the usage data being communicated to them by the machine indicated my husband hadn’t used the machine at all in a few weeks. According to our rental agreement, that is “noncompliance” and after three weeks of noncompliance, we are obligated to return the machine.

So, on Tuesday morning, while I was in a meeting, I got an email saying someone was on their way to the house to get the machine. Twelve minutes later, sure enough, someone knocked on the door and demanded the machine. Because I was in a meeting and not checking my email, my daughter answered the door, assumed I had been expecting the machine pick-up and handed over the machine along with some other items she mistakenly thought went with it. It wasn’t until after my meeting, when I saw the email and read the “receipt” they later emailed that I realized what had happened.

The receipt said “patient not compliant, we need our equipment back.” The receipt also indicated that my husband was “not home” at the time.

This is a great example of enforcing a policy like a jerk, just as I was doing in the Writing Center when I blocked students who were no shows from making future appointments. I’m guessing the company’s noncompliance rate is like the Writing Center’s no show rate: fairly stable whether the company acts like a jerk or shows some compassion and connects with patients on a human level.

Do you have policies you implement like a jerk in your classroom, department, or workplace? Can you imagine ways to replace being a jerk with showing compassion and connecting on a human level?

**The CPAP company, if you’re interested, is AdaptHealth and they have not acknowledged my messages about how they handled the CPAP machine retrieval.

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:

Thinking About the Needs of Disabled Folks in Classrooms & Workplaces

As someone who teaches rhetoric, I am always noticing how the ways we talk about something shape the ways we think about that thing. I recently discovered The Squeaky Wheelchair, the blog of Kathleen Downes, a woman with cerebral palsy, and found myself nodding emphatically to every sentence of her post “It’s Your Job Too: Dismantling the Myth of Specialness and Making Inclusion a Community Responsibility,” in which she argues against using the word “special” to describe the needs of disabled people.

Downes notes that

Calling our needs special isolates them from the rest of human needs, and in the process shrouds them from the body of general knowledge. When needs become special, they are tucked away in special departments run by special people who specialize in specialness. Disability becomes its own hidden corner of the universe as it is implied that only those with a related job or a family member with a disability should ever bother to explore the issues that come with living a disabled existence. The responsibility to learn about and be aware of our lives is seemingly confined to the world of specialists and people who “have experience with those kind of people.”

She goes on to explain that the needs of disabled people are not “particularly special . . . We need to eat, sleep, get dressed, bathe, go to the bathroom, breathe, and a whole bunch of other painfully ordinary things.” As both a disabled person and the caregiver of a disabled person, I can attest that it’s true: our needs are pretty mundane. Most of our needs can be met by almost anyone. For example, I’ve written before about how one of my needs is to have someone read a hotel room number to me—no special training needed, no special skills, nothing special at all.

In academia, we adapt things for able-bodied people all the time. My faculty colleagues often brag in their retention, tenure, and promotion applications about how willing and even enthusiastic they are about meeting the needs of a diverse group of students. But those same colleagues can also often be heard complaining about the “special needs” of students registered with our disabilities services center. When faculty think of students having diverse needs, they take pride in meeting those needs. But when they think of students as having “special needs,” suddenly those needs become above our paygrade.

The truth is, the needs of those students are often the same needs of any other student: being able to read the slides or the assigned reading, being able to hear the professor and peers, being able to sit comfortably in the classroom, having enough time to process instructions and follow them. The needs themselves are not special, and even the ways those needs can be met are not special. Switching from a low contrast to a high contrast slide template isn’t special. Giving everyone in the class two hours to take an exam instead of one isn’t special (your class is only 75 minutes long? Then put fewer questions on the exam).

When I informally polled a class in fall 2019 (pre-pandemic) about their ideal testing situation, more time, a distraction-free environment, and no fluorescent lighting were the top three requests of the students, regardless of disability status. The only request on this list that was the least bit surprising to me is the one about lighting, and I realized that I could easily make a fluorescent lighting-free environment available to my students by making all exams take-home (this is hypothetical—I don’t actually give exams in my classes), allowing students to take the exam outside, at the library, at home, etc. Although these requests are not at all strange or exotic, think about how differently these two sentences strike you:

  • “Susan needs extra time on tests, a distraction-free testing environment, and no fluorescent lighting.”
  •  “Susan has several special needs: extra time on tests, a distraction-free testing environment, and no fluorescent lighting.”

Susan sounds like a fairly typical student in the first sentence, but in the second sentence, she sure sounds high maintenance, doesn’t she? Simply by calling needs “special,” they become more exotic, more inconvenient to provide, and potentially even unreasonable.

We could play further with the sentence. What about this one?

  • “Susan performs best with extra time on tests, a distraction-free testing environment, and no fluorescent lighting.”

Now Susan sounds pretty unremarkable.  

You may be thinking, well, none of this matters much for me, I don’t work with disabled students or colleagues (or students/colleagues with “special needs”). Not so fast. Because of issues I’ve recently discussed, including how exhausting it can be to ask for accommodations and how expensive, difficult, and time-consuming it can be to get documentation of disabilities, you likely have more disabled students in your classes or colleagues in your workplace than you realize. Why wouldn’t you want everyone to be able to perform at their best?

Downes argues that because of the way we talk about (and thus think about) the needs of disabled people as “special,”

the responsibility of people outside of the direct disability community to include and think seriously about access issues is shifted away based on the belief that “special services” will deal with it.

But it is actually everyone’s responsibility. And it isn’t difficult most of the time. The suggestions I’ve offered for making classrooms and workplaces accessible aren’t hard to put in place or particularly “special.” For many people, implementing my suggestions simply means being deliberate about things you may already be doing. My suggestions aren’t that you do anything “special” for “special” people with “special” needs, but that you think about making your classroom or workplace accessible. Not special, but accessible. Or even inviting, or responsive. Play with words you like until you find one that resonates with you and your teaching practice and then aim to make your classroom [whatever that word is].

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.