Tag Archives: disability

Stop Shaming People Who Use Accommodations to Work Remotely

“Please make an effort.” “It would mean a lot to me if you were there in person.” “Make every effort to be there in person.” These are a few examples of the ablest and shaming rhetoric I’ve heard lately on campus about using accommodations to attend meetings remotely. My colleagues and I who have accommodations to attend meetings remotely are regularly asked to “make an effort” to attend face-to-face. The implication is clear: if you use your accommodation, you are not making an effort.

Campus leaders routinely engage in ableism, framing accommodations as attempts to not put in effort. I was recently in a meeting in which a colleague showed a video; as it began without subtitles, an attendee asked, “Can you turn the subtitles on?” The colleague said, “Can you just make an effort?”

Or using accommodations is framed as ruining everyone else’s fun, as in this example: A colleague described an icebreaker they had planned for a meeting that involved attendees doing some silly activities with a tight time limit. I asked, “What if some folks have accommodations for anxiety? Wouldn’t this ice breaker cause anxiety?” My colleague argued that the icebreaker was just for fun. For me, being humiliated by having an anxiety attack in from of my peers is not my idea of fun.

When people do use their accommodations, the culture of shaming can show up in disgruntled whispers of colleagues who ask incredulously, “What’s their disability?!” or comment, “I wish I didn’t have to attend in person!” or “It’s inconvenient for me, too, but I manage it.” These whispers are encouraged when the leader begins the meeting by saying, “That you all for making the effort to be here,” implying that folks who aren’t there didn’t make an effort.

I’ve written before about the challenges of getting documentation of a disability so I can get accommodations  and about why I don’t always ask for accommodations I am entitled to. The entire process of justifying accommodations is disempowering, humiliating, and time-consuming. Then, once a person goes through that process, they are shamed for using the accommodations.

On my campus, leaders regularly shame people who use their accommodations to attend meetings remotely instead of in person. Here are some examples of the shaming language I have heard lately:

What leaders say: “people are tired of remote meetings” or “staring at a screen is exhausting”

Translation: it’s your fault that people still have to attend remote meetings and be exhausted

But here’s the truth: many people dislike meetings whether they are remote or in person.

Here’s another truth: many people prefer remote meetings and are better able to engage when they can be home with their pets and/or children or in an environment they can control.

What leaders say: “I expect you to be there in person”

Translation: If you are not there in person, you are not meeting expectations. This echoes the language of evaluation in which people who are evaluated as doing their jobs poorly are rated “does not meet expectations.” Not meeting expectations is bad and shameful.

The truth: The expectations of leaders are often unreasonable and not grounded in the reality of workloads, bandwidths, and structural inequities.

What leaders say: “This is a reasonable expectation”

Translation: I have not done any research into this, but I strongly prefer in-person meetings and this is how we did things in the before-times and everyone was fine with it.

The truth: No, everyone was not actually fine with it. You didn’t ask or you weren’t listening or people didn’t feel empowered to speak up. Parents and other caregivers, people with disabilities and/or unreasonable workloads were not fine with it. I have never been fine with most in-person meetings, which are typically run badly and take me away from doing the meaningful work of teaching and research.

What leaders say: “The benefit of face-to-face meetings outweigh the convenience of attending from home via Zoom”

Translation: attending via Zoom is a mere convenience for people who are lazy, unmotivated, disengaged, and/or not prioritizing the important work that will happen at this meeting.

The truth: Accommodations are not about convenience, laziness, motivation, engagement, or priorities. Accommodations acknowledge differences in bodies and neurology. My glasses are technically an accommodation, not something I use because they are convenient or I am lazy. Glasses are commonplace enough that we don’t typically recognize them as an accommodation. Surely, a supervisor wouldn’t ban people from wearing glasses to a meeting. But if I ask for special lighting, I am likely to be told that there are others who will be bothered by that lighting. Why not let me attend remotely, then, so that I can control the lighting in my workspace without impacting others?

An anti-ableist alternative to all of these examples is to acknowledge that there is no one-size-fits-all mode for meetings. We might even begin by evaluating whether a meeting we are planning is necessary. Once the specific purposes of the meeting are identified, a reasonable judgment can be made about whether the purposes will be undermined by remote attendance.

Any time a leader questions the legitimacy of an accommodation, they create a culture of ableism in which disability is seen as evidence that someone is “broken.”

Disability = Normal. Disability ≠ Brokenness.

I’ve been very public with my vision issues and my recent experiences with anxiety. I do this to normalize disability. Living with disability is totally normal for me and for lots of other people. The most recent statistic I saw is that one in four adults in the U.S. has a disability at any given moment. The longer you live, the more likely it is that you will acquire a disability. My late husband is a great example: he lived without disability for decades and then when he was 60, he had a massive stroke that left him with multiple disabilities. He went from completely able-bodied to disabled in a split second.

Despite the fact that so many people are or will be disabled, we have a hard time as a culture understanding disability without judgment. The assumption that everyone is or should be able-bodied is called ableism and it is everywhere. I wrote about the challenges my late husband and I faced trying to get around downtown Denver when he was using a wheelchair last year. The restaurant that required wheelchair users to send a companion in to ask for help, wait for the right employee to materialize, get escorted around the building, and then traverse a large space in front of an audience had designed its entrance with the assumption that all patrons would be able-bodied.

I recently listened to a fantastic podcast on ableism. Glennon Doyle featured Carson Tueller on the July 27 episode of her podcast We Can Do Hard Things. The episode was titled “How to Love Your Body Now,” which is an idea that can apply to anyone, able-bodied or disabled. Carson Tueller, who was paralyzed from the chest down in an accident in 2013, told the story of how he came to accept, love, and feel at home in his body, recognizing it as “complete and enough.”

Tueller explains ableism as “the idea that there is such a thing as a good body and a disabled body is a broken version of a good body.” I like this explanation because of its use of the word “broken.” Something that is broken is damaged or ruined. We throw out things that are broken. When we understand some bodies as broken, we bring with us into that understanding the connotations of “broken”—that the body is ruined, it should be thrown out. The person living in the disabled body is seen as disposable. Unlovable. Unworthy.

Tueller shares that after his accident, he found a new way of thinking about his body. Instead of thinking of his body as broken, he thought, “My body now works differently.” That may seem like a small shift, but as Tueller explains, there is “no drama, no brokenness there” and that thinking of the accident as something that changed his life rather than as “a disaster that ruined my life” made it possible for him to see his body in its current state as complete rather than broken.

Notice that it’s not the injury or disability itself that causes the feelings of disposability or unworthiness—it’s the ableism that assumes a disabled body is broken. As Tueller says, “I can survive being paralyzed. I can’t survive feeling unlovable.” Tueller has found that living in a disabled body is quite wonderful (and I was thrilled to hear him disrupt the notion that disabled bodies aren’t sexy or that disabled people are asexual—he is having great sex).

When we assume that disability needs fixing, we convey that disability is a de facto problem, that something is wrong with people who have disabilities. There is nothing wrong with my eyes. My eyes can’t be wrong. Yes, my eyes function differently from lots of other eyes. But my frustrations with my vision are usually connected to something outside of me that could be fixed. For example, one of my most common challenges is not being able to read signs. Why is the assumption that my eyes are the problem rather than the poorly designed signs? I meet people all the time who can’t read street name signs, street numbers on buildings, and the like. Why not just make bigger signs or use a different font and make everything easier for everyone?

This idea that the problem is located in the person with the disability is ableism and it sneaks into our lives in insidious ways. In “Unlearning the Ableism of Cookbooks and Kitchen Wisdom,” Gabrielle Drolet brings attention to what she calls small-scale disability—”the little things that add up to make a life. Things like tying your shoelaces or braiding your hair or lighting a candle. Like turning on the faucets to wash your hands. Texting your friends. Cooking with ease.” The type of ableism Drolet identifies in cookbooks is less about brokenness and more about laziness. The cook who buys pre-ground pepper or uses paper plates is assumed to be lazy or wasteful. I was called wasteful when I bought two identical cutting boards, one in white and one in green, but with low vision, I can’t see the onion I’m cutting on a white board or the basil I’m cutting on a green board. The person who called me wasteful didn’t ask why I wanted two boards—they jumped straight to calling me wasteful.

Ableism is so deeply baked into our culture that during Disability Pride Month (July), someone asked me why anyone would take pride in being disabled. This was a person I know to be kind and generous. The question was a genuine one and grew out of the idea that being disabled equals being broken. Why take pride in being broken? To grasp taking pride in being disabled, you have to reject the idea that disability equals brokenness.

I am not broken. I do not need fixing. I love myself, my eyes, and even my anxiety. My low vision and anxiety are natural and normal. I refuse to be ashamed of them.

Say “uses a wheelchair” rather than “in a wheelchair”

After his stroke, my husband used a wheelchair to get around. The stroke left him paralyzed on his left side and although he was able to walk a few steps with a lot of effort and sometimes with assistance, getting around in a wheelchair was more efficient and less tiring.

More efficient and less tiring, but still a lot of work. The stroke destroyed a large portion of his brain and so he spent hours every week in physical therapy and then on his own working to retrain his brain to coordinate movements that used to come naturally and to recognize signals from parts of his body his brain had forgotten. To learn to sit upright in the wheelchair, he practiced sitting up straight in front of a mirror, developing core control, noticing when he was slumping to one side and using trial and error to activate the muscles necessary to straighten himself out. Once he was able to sit up straight in the chair, he had to learn how to get from the bed or another surface to the wheelchair, how to transfer his weight in ways that wouldn’t potentially cause a fall or injury, and how to work as a team with a person assisting him (that was usually me). He had to train his brain to remember to check that the chair’s brake was on or off and to make sure his paralyzed left arm wasn’t in a position where it could get tangled in the wheel or smashed against a wall if he rolled too close to it.  

To get around in the wheelchair, he had to learn to maneuver around people, objects, obstacles, pets, cords, divots in the sidewalk, and obstructions that a person with two functional legs could easily negotiate by straddling, hopping, or stepping over. The world is built for ambulation on two legs; successfully using a wheelchair to navigate a world not built for it is much more complicated than walking.

I know how much effort it took Tom to get around with the wheelchair and it makes me wince to hear that immense effort swept aside with a common phrase: “He’s in a wheelchair.”

My husband’s physical and occupational therapists, his doctors and nurses, his family and friends, used this phrase regularly. Every time I heard it, I winced a little. It minimizes everything about the human being sitting in the chair. It puts the focus on the machinery of the chair, perhaps the requirement of a caregiver or attendant. It renders invisible the person sitting in the chair.

Notice how differently these two sentences hit you:

  1. During the last year of his life, my husband was in a wheelchair.
  2. During the last year of his life, my husband used a wheelchair.

In the first sentence, my husband does nothing. There’s actually no action at all in the first sentence. Nobody does anything. It’s boring, implying a boring life and a boring person. If I were to follow this sentence with how much I loved him, you would have been prepared by the first sentence to hear my declaration of love as tinged with pity.

In the second sentence, my husband does something. There is action. He is the boss in that sentence. When I tell you after that sentence that I loved him, you’re much more likely to take it as a love that includes admiration, respect, and passion.

The simple word choice has an effect that ripples out to color the sentences that follow and impact your understanding of everything else I tell you about my husband.

When we say someone “is in a wheelchair,” we’re framing the wheelchair as a state of being, like being in a funk or in a mood. Conversely, when we say someone “uses a wheelchair,” we’re framing the wheelchair as a tool. Because the words we use impact the ways we see the world, a phrase like “in a wheelchair,” which obscures the agency of the person in the wheelchair, is a sneaky way ableism slides unnoticed into our speech and thus our worldview.

“In a wheelchair” implies that someone can’t do anything for themselves, that they are a burden with no agency. It erases all the hard work of navigating a world that is not designed for you. It is easier to leave someone out of an equation when we say they are “in a wheelchair.” On the other hand, “uses a wheelchair” acknowledges that a person can learn a new technology and navigate complex situations. Notice the difference between saying “we can’t hire someone in a wheelchair for this position” versus “we can’t hire someone who uses a wheelchair for this position.” In the first example, no further explanation is needed—of course you can’t hire someone who is a burden with no agency. But the second example does require at least a bit more explanation—why can’t someone who uses a wheelchair do this job?

I admit, I sometimes use this phrase. I’ve heard it so often that it occassionally rolls off my tongue without me even realizing I’ve said the dreaded phrase. But when the person in the wheelchair was the love of my life, whose effort was viscerally apparent to me, I learned how viciously unjust the phrase is. It sweeps aside all the effort, humanity, and agency of the person using the chair.

I know people who use this phrase are, like me, using it unreflectively. They are not issuing judgment on anyone. They mean no harm. They are speaking from a place of sympathy. But the language still does harm, whether the speaker intended it or not.

It’s a pretty easy switch to replace “in a wheelchair” with “uses a wheelchair,” and it will make a difference in how you see people who use wheelchairs.

Bursting into Flower in Slow Motion

I recently came across Muriel Rukeyser’s brief poem in response to Sylvia Plath’s death, “The Power of Suicide”:

The potflower on the windowsill says to me
In words that are green-edged red leaves :
Flower     flower     flower     flower
Today for the sake of all the dead      Burst into flower

I love the sentiment of living harder in honor of people who don’t live anymore. This is what I have been trying to do since my husband died 6 ½ months ago. My husband was known for living life to the fullest and when he passed away, I felt strongly that the most fitting way I could honor his memory would be to embrace life, have adventures, and bring joy to others. Although I have felt intense sadness, I’ve also felt intense happiness, sometimes at the same time.

Many times since my husband’s death, as I’ve navigated doing alone what I thought I’d have a partner along with me for, I’ve felt something like “bursting into flower,” although the phrases I’ve been thinking of are “blossoming,” “coming into myself,” and others that capture the slow, gradual nature of what seems to be happening.

Last week, I read an excerpt from Ocean Vuong’s novel, On Earth We’re Briefly Gorgeous, in which he observes, “If, relative to the history of our planet, an individual life is so short, a blink, as they say, then to be gorgeous, even from the day you’re born to the day you die, is to be gorgeous only briefly.” That reminded me that the time that Tom has been gone—6 ½ months—is just a flash in the grand scheme of time, and that this blossoming that seems to be happening slowly, is, relative to “the history of our planet,” bursting into flower. So this week, I’ve been thinking of myself as bursting into flower in slow motion.

What isn’t possible one day often feels possible the next. One day, even looking at his clothes didn’t feel possible; a few days later, looking at them felt possible; a few weeks after that, moving them out of the closet felt possible. They are in the garage now, and one day, it may feel possible to give them away. The day I collected his ashes from the mortuary I carried the very heavy box around with me for most of the day; being apart from them felt impossible. The very next day, it was possible to leave them on my nightstand. One day I moved the box into a drawer. Over time, I’ve been able to scatter some of the ashes.

I wrote earlier this month about moving the glass of juice Tom drank the night before he died from the front of the fridge to the back. Today, I took a deep breath, excavated the juice glass from the back of the fridge, and moved it to the sink. It was gut wrenching—saying good-bye to the glass of juice is just another good-bye to Tom. The good-byes seem to keep coming. Good-bye to this mug of his and that book. Good-bye to the piece of paper he wrote on, good-bye to his hats, good-bye to his toothbrush. I have said good-bye to hundreds if not thousands of Tom’s things in these 6 ½ months.

This week it was the juice glass and a jar of pickles he bought at a farm market Lily and I took him to a month before he died. There will be something else next week or the following week. Or maybe it will be a few weeks or months before I am able to part with something else of his. Twenty years from now, looking back at these months, it will probably seem as if I got rid of things quickly, packing up Tom’s 61 years of life in a flash. The deliberation over each item, the stopping to dwell on a memory, the gentle interventions of the dogs to comfort me will all be erased and all that will remain is a line of my personal history: I packed up Tom’s things.

Somewhere in my personal history, it will read “After her husband died, she traveled to Europe and South America and Antarctica.” It will appear that I burst into flower, going from afraid to travel alone with my impaired vision to traveling the world in a flash. All my minor mishaps last week in Portland, Oregon, my first solo trip since Tom’s death, will be invisible. I did not burst into flower in Portland—I tripped off a curb into oncoming traffic, I wandered onto a construction site and had to be escorted off, I needed the help of multiple strangers to find and buy a cleaning cloth for my glasses when I got caught without one in a rainstorm and couldn’t tell the difference between the sidewalk and street.

One day, maybe when I am scattering some of Tom’s ashes at the tip of South America, a place he dreamed of riding his motorcycle to, I will remember how in the days after Tom died, the idea of traveling without him felt fantastical. I wasn’t sure I could ever find my way around an unfamiliar city on my own, navigating so many obstacles with my impaired vision. The mishaps in Portland will likely be condensed or maybe even forgotten, and I may think, “Here I am, on a continent Tom never made it to. Look at me, bursting into flower for his sake.”

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.”

https://www.thesqueakywheelchairblog.com/2014/10/its-your-job-too-dismantling-myth-of.html

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.

https://www.thesqueakywheelchairblog.com/2014/10/its-your-job-too-dismantling-myth-of.html

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.

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.