Tag Archives: ableism

Accessibility + Dis/ability

When the Door Opens for Everyone but You

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Imagine a new friend invites you to a party at their house. When you arrive, you knock on the door, but nobody answers. You try the door but it won’t open. You step over to the sidewalk to check that you have the address correct. From the sidewalk, you notice other people arriving and having no trouble getting in, but when you return to the door, it won’t budge for you. You text your friend, but they are probably busy greeting guests and don’t respond to your message. Finally, you decide to ask the next person arriving to hold the door open for you but when you do, they say, “Well aren’t you high maintenance?” They were probably joking, you tell yourself, but before you can respond, the door has swung shut again. By this time, you feel very dejected, not to mention worn out from pulling and pushing on the door. You are now in no mood to socialize. You go home, wondering what just happened.

The next day your friend texts you, apologizing for not seeing your message the night before. You are still too confused and exhausted from the experience to have a conversation about it, but the next time you see your friend, you explain that you tried to get in but couldn’t open the door. They look at you with confusion. “Nobody else had any trouble,” they say. “Why didn’t you ask for help?” You want to explain that you did, but you’re already feeling a bit foolish, so you just let it go.

You might laugh off this odd occurrence if it happened only once. Now imagine that this happens every day, everywhere you go: at work, at the grocery store, at restaurants, at school, at church, at the homes of every friend and family member. Nobody else seems to have trouble getting in. It’s just you.

This is what it’s like for a disabled person trying to access spaces that are designed with only non-disabled people in mind. You can take this basic metaphor and extend it in different ways to understand the experience of a disabled person. For example, as a vision-impaired person, I can usually get into a space but then I often can’t access what’s happening in the space because the signs, slides, handouts, etc. aren’t visible to me. A neurodivergent person may, like me, be able to physically enter the space, but then may find the social cues others notice to be invisible to them.

It’s frustrating and confusing. When I first can’t see what others see, I often don’t even know they see something I don’t. I sometimes wonder how everyone else knows where to go for a meeting—it often turns out there are signs that I don’t see. Asking for help is often unproductive because I don’t know what I’m missing so I don’t know what to ask for. Or, like the person who asks for help getting into the party and is met with a sarcastic response, my requests for help are greeted with snide comments because my disability isn’t apparent. (I am so tired of people pointing at signs I can’t read when I ask for help!)

As my hypothetical scenario shows, there’s no malice on the part of the friend who throws the party or even the people who don’t help. They are just oblivious to the plight of the person who can’t get in. But the lack of malice doesn’t make the situation easier for the person who can’t get in.

Last week I spent a few days in Washington, DC, doing research related to disability at several national sites. I saw lots of gestures toward accessibility that I appreciated—and yet, the doors still don’t open easily for everyone.

The National Mall: I was surprised to learn that the FDR memorial is the only one of the 100+ memorials and monuments on the National Mall to include Braille on some of its exhibits. All of the memorials and monuments have brochures in Braille available and are wheelchair accessible. A park ranger explained that the FDR memorial includes Braille as a nod to FDR being disabled himself. (I was surprised at how powerful it was to see the statues depicting FDR using his wheelchair—I’ve seen wheelchairs in photos, but I don’t think I’ve ever seen one in a statue.)

As much as I appreciated the availability of Braille brochures at the sites, every time a disabled person has to ask for accommodations, they are the person trying to get into the party at the house where the door seems to open for everyone but them. That feeling of not being able to get into the house where the party is compounds over time. Asking for a brochure isn’t a big deal. Having to ask for a brochure constantly, day after day, wears a person out. Annika Konrad calls this being worn out feeling access fatigue.

Gallaudet University: Another day I went to Gallaudet University’s National Deaf Life Museum. The museum itself was very thought-provoking, especially the exhibit on HIV/AIDS and the Deaf community. The title of the exhibit was “Left Behind” and it focused on how Deaf people didn’t have access to information about HIV/AIDS during the epidemic.

The museum is in a beautiful campus building that exhibits the traditional academic architecture Jay Dolmage talks about in Academic Ableism. From the front, it appears the only way in is up a foreboding set of stone steps. I walked around the building looking for a wheelchair accessible entrance out of curiosity and did find one, but there was no indication at the front of the building where to find the accessible entrance. A person using a wheelchair would likely need to ask a random passerby for help finding it.

I want a world in which the doors open for everyone, but I wonder if it’s even possible. Surely it would be possible to put an attractive and high contrast sign in front of a building indicating where the accessible entrance is—or better yet, make the main entrance accessible. Design Braille into the next monument. Find ways to prop the doors open.

Accessibility + Dis/ability, anxiety, grieving

Recognizing Internalized Ableism on My Anniversary

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Today would have been my anniversary with Tom. Today IS my anniversary with Tom. My inclination is to write the first sentence because I am no longer his wife, but I realize that whether he’s dead or alive, today IS the date we got married in 2011. There is much that was and much that still is. My love for him and the life we had together is just as strong as it was when he was here to celebrate with me. But that life is a memory now, and as much as I love the life I am living now, it is not a life with Tom.

I was at a conference last week and knew my anniversary was coming up, but lost track of which day it was. My return flight yesterday got significantly delayed and I ended up not getting home until after midnight. After crawling into bed, I was almost asleep when suddenly I realized that because it was after midnight, it was my anniversary.

That realization, on the heels of a long travel day, kicked off my anxiety and big tears. My mind kept going back to our last anniversary together, after his stroke and just a few months before he died. We went to one of our favorite restaurants and they were woefully unprepared to greet a guest using a wheelchair. The next morning over brunch, Tom took my hand and apologized for not having understood the challenges of my being disabled.

It was an incredible acknowledgment. The last few years, he had been incredibly supportive but when I first started mentioning that my vision didn’t seem right, he was skeptical. Like many people in my life, he wondered if I was exaggerating things or just not trying hard enough to see. Especially when my disability inconvenienced him, he would ask me if I was really trying. It was maddening for both of us.

I finally understood at some point that he hadn’t not believed me but that he hadn’t been ready to accept that I was going to have to deal with the challenges of a disability for the rest of my life. I noticed a similar resistance in myself when Tom’s doctor told me there was a high likelihood that Tom would never walk again. My immediate response was that of course Tom would walk again because I knew he would work hard in physical therapy.

But no matter how hard he worked, walking unassisted was out of his reach. I kept thinking he just had to work a little harder, but even as I had that thought, I knew it wasn’t accurate. All of his physical therapists were astounded at how much progress he made and how hard he did work. It wasn’t about hard work—it was about the stroke having knocked offline the part of his brain that handled his left side. I saw the MRI images and the massive infarct, the technical term for the brain tissue killed by the stroke. Two-thirds of one hemisphere of his brain just didn’t exist anymore.

Even knowing it wasn’t about how hard he worked, my own brain kept grasping at the idea that if he just worked a little harder, maybe, maybe, he would walk again. I realize now that that’s the line of thinking he followed when he wondered if I was trying hard enough to see.

This is what internalized ableism looks like: me wishing my husband would work hard enough to walk again, him wishing I would try hard enough to see what he saw. The line of thinking might originate with optimism and hoping for a “positive” outcome, but there are at least two big problems with that rationalization. First, it attributes the desired outcome with hard work and less than the desired outcome with not enough work, and second, it assumes that walking, in my husband’s case, and what is considered normal vision, in my case, are the only outcomes that can be judged successful.

On this anniversary, I miss everything about that man who used a wheelchair, including his wheelchair. His physical and occupational therapy sessions were often team efforts, with both of us working together to get him somewhere or accomplish a task together. It helped us realize in a concrete way that we were always on the same team. We hated the stroke and the pain it caused Tom, but it opened up some opportunities for us to communicate better and become closer.

I celebrated this anniversary by sleeping in, being gentle with myself, and sharing memories with my daughter. I went to Tom’s bench and talked to him for a bit. I got a few emails and texts from loved ones, acknowledging the anniversary, which I appreciated. I felt lucky to have had such a great love and proud of the life I am living now, which was shaped in so many ways by my relationship with Tom.  

Accessibility + Dis/ability

The Real Reason Why Going to Conferences Is So Exhausting to Me

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I came home this weekend from two back-to-back conferences in Chicago that left me exhausted. I only spent one full day at each conference, so I shouldn’t be that tired, but navigating conferences as a disabled person takes a lot of stamina. This is true even though accessibility gets talked about a lot more now than just a few years ago and academic conferences seem to all have accessibility guides.

The accessibility issues I ran into happened even though everyone I interacted with was kind and meant well. Many people helped me in different ways. But people’s good intentions and my positive attitude don’t make the world more accessible. As Stella Young put it in this fantastic TED Talk, “No amount of smiling radiantly is going to make a staircase turn into a ramp.”

Things started off a bit tricky, with a flight delay that caused me to arrive at my hotel after dark. With no natural light coming in, I bumbled around my hotel room, having to rely on the inadequate lamps. I have described before what I like to do when I first arrive in a hotel room to make it accessible; with it being dark outside, I wasn’t able to do everything I like to do until the next morning. Luckily, the room did have better-than-I’ve-come-to-expect lighting by the bed, but much of the room was just a shadow to me until morning and I have the bruises on my hip where I walked into the dresser to prove it.

The bigger challenge was navigating the conferences themselves. The first conference was an International Writing Centers Association event at DePaul University in a space that was well-lit, but the room numbers were tiny and hard to find. I had to walk up to each room’s door, locate the sign, and put my face an inch or two from the sign to find the room number. Luckily, other conference participants were kind about noticing my trouble and helping me find the rooms I needed; but the stress of frantically trying to find presentation rooms made me feel worn out by the time I got into the right rooms.

 The conference session themselves were excellent, but the accessibility was not. Despite the IWCA having a top-notch accessibility guide, speakers used the microphone and provided printed scripts in only one of the three sessions I attended. In the other two sessions, presenters had no handouts and did not use the microphone. One of these sessions was a roundtable in an auditorium, so the sound just disappeared into the ether. Normally I would have asked the speakers to use a microphone, but there was some confusion at the beginning of the session and by the time I realized speakers weren’t going to use the microphone, I would have had to interrupt the proceedings quite awkwardly. In hindsight, I wish I had done just that, but in the moment, I was discombobulated.

The second conference was the Conference on College Composition and Communication at the Hilton Chicago. I encountered so many unexpected steps and tripping hazards there that by the time I headed home, my neck hurt from looking down to watch my step. The room numbers were just as challenging to find as they had been at DePaul, with the added twist of seemingly random placement of room number plaques. At least at DePaul, all the room number plaques were to the right or left of the doors and looked similar; at the Hilton, some were to the left, some to the right, some above, and some I never found. Some plaques were electronic and others were not. Some had high contrast and some did not. Plus instead of room numbers, the rooms had names, so there was no internal logic; while I know room 5 is likely to be beyond room 4, where might the Lake Ontario room be in relation to the Buckingham room?

Finding room numbers was frustrating, but the surprise elevation changes with unmarked steps were truly treacherous. In one of the conference spaces, there were at least two little sets of 2-3 steps that almost killed me. Both were carpeted and blended in with the surrounding flooring. After almost tripping down each one, I turned to get a good look at them. One set did have a gray stair marker that I could see after the fact; the carpet was blue and gray, so the gray stair marker didn’t stand out and thus, didn’t really do the job it was supposed to do. This is a great example of focusing on legal compliance without considering the real purpose of accessibility: to make a space safe and navigable by a person with a disability.

I entered each room completely frazzled. Like the IWCA conference sessions, the Cs conference sessions were a mixed bag in terms of accessibility. Cs also has an excellent accessibility guide; still, speakers in only three of the four sessions I attended used the microphone and speakers offered scripts in only two of the four sessions. Slides in all the sessions were illegible to me, but I suspect part of that is because the projection screens were smaller than speakers may have anticipated and often positioned awkwardly so that not everyone in the room had a clear view of them.

Both of these conferences relate to literacy and the teaching of writing. The presenters are people who value reading and communication, and yet, clearly, a large proportion of them have not read the wonderful accessibility guides available to them.

My plea to people who give presentations:

  1. Read the accessibility guide. If the conference planners have created an accessibility guide, read it and follow the guidelines in it. If you don’t know how to do something the accessibility guide recommends that you do, learn how.
  2. Use a microphone. I understand why people don’t use a microphone. If you’re not used to speaking into one, it can feel awkward. But in 2023, if making presentations is part of your job, then you need to get comfortable using a microphone. Consider it part of your professional development.
  3. Create accessible slides. When you create your slides, assume that the presentation situation will be less than ideal: the room’s lighting won’t be great, the screen will be smaller than you’d like and farther away from participants than you’d like. And for the love of whatever you hold dear, please observe the rule of 5. Again, if you are not good at creating accessible slides, consider it part of your professional development to get good at it.
  4. Make a script available to participants. Yes, I know, it uses paper and is a bummer to have to have your presentation written up in advance rather than writing it feverishly the night before. Again, part of being an academic professional these days means making your materials accessible.
  5. Advocate for accessible conference spaces. If you have anything to do with planning a conference, ask pointed questions of the host facility about accessibility. How will folks who use wheelchairs access spaces? How will vision-impaired folks find rooms? How will hearing-impaired folks hear presentations? Where can folks go for a quiet space if they are over-stimulated? And have a back-up plan in case ASL interpreters call in sick or get stuck in traffic (this is another great reason for presenters to have scripts available).
Accessibility + Dis/ability, anxiety

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.”

Accessibility + Dis/ability

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.

grieving

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.

grieving

Noticing Ableist Assumptions about Meeting/Class Discussions

Last week I was in a meeting of about 20 people in which a topic I have very strong opinions about came up. I very much wanted to contribute to the discussion, but other people were jumping in so quickly that I had a hard time really processing what they were saying while simultaneously trying to organize the complex thoughts in my head. Every time I thought I had my thoughts organized enough to articulate them aloud, someone else would start talking and I would need to leave my thoughts aside to listen to the speaker. After about 15 minutes of spirited discussion that I had not contributed to in any discernible way, the discussion slowed down and finally, the person facilitating the meeting asked if there were final thoughts. The following three seconds of silence gave me the opportunity I needed to finally organize my thoughts and I was able to share them.

Had there not been those few seconds of silence, I might have not contributed at all to the discussion. To others in the meeting, it might then have appeared that I was completely disengaged or had no opinion or thoughts on the topic, which was not at all the case.

Unfortunately, this is a fairly common experience for me. I have moments of being able to think quickly enough to jump into a conversation immediately, but it is more common for me to need some time—sometimes just a few seconds, as in the example above, and other times a few minutes—to collect my thoughts and get them ready for prime time. This was true before the exhaustion of being my husband’s caregiver and then unexpectedly a widow kicked in, and it’s gotten more pronounced since then.

While silence during a discussion can appear to be evidence of lack of engagement, there are many other reasons someone might not participate in a discussion:

  • Like me in the example above, they may be a reflective thinker who needs time and/or quiet to process thoughts.
  • They may be a deep listener who actually pays 100% attention to what others are saying, which means they aren’t simultaneously formulating what they will say.
  • They may have a cognitive processing difference that makes it hard for them to make sense of rapid or overlapping speech.
  • They may be tired, undernourished, and/or underhydrated. All of these conditions affect cognitive function.
  • They may be anxious, either about a particular situation in their life or they may have an anxiety condition. Either way, cognitive function could be affected.
  • They may be introverted and despite all of society’s pressures to participate in the type of discussions typical of meetings and classes, that simply may not be the way they are wired.

Despite all these very good reasons for not participating in discussions, I hear colleagues immediately judge students and colleagues who don’t participate in discussions in meeting and classes as “lazy,” “disengaged,” or “in over their heads.” I do it, too; in fact, I’ve noticed that my default is to wonder what is “wrong” with the person. This is an ableist way of looking at the situation, assuming there is something defective about the person who is not responding the way I want. I’ve been working over the last few years to notice myself having that thought and remind myself of all the very good reasons a person may have for not participating in a discussion. To mitigate my own tendencies to make this unfair judgment, I have been working on ways to build some silence and processing time into facilitating discussions.

As a teacher, I begin each class with a five-minute writing prompt designed to help students collect their thoughts for the discussion we’ll have in class. I also use the classic “count to ten in your head” after asking a question before I speak again. As an NCFDD coach, I allow generous silence during conversations to allow folks time to collect thoughts. But I do not typically allow silence in the meetings I facilitate, in part because I have prided myself on running “efficient” meetings and silence does not appear to be “efficient.”  

I have much more work to do on this front as a meeting facilitator. Allowing silence in meetings means sacrificing efficiency; I hate meetings and want to get them done as quickly as possible. But I recognize that getting them done quickly at the expense of restricting fruitful discussion is counter-productive. I am going to start playing with beginning important discussions by asking everyone to take two minutes to jot down their thoughts.

As a meeting participant, I am going to start asking for a moment to collect my thoughts. For example, in the meeting I described at the beginning of this post, I could have said, “I have some thoughts to share but I need a moment to collect them. Please bear with me.” I have never seen anyone do this in a meeting and I suspect other participants who don’t need the time I need to collect thoughts may find it unprofessional or even disrespectful of their time. I have tenure and can afford for people to think less of me, so I am going to try this strategy, but for folks with less privilege than I have, it may not be a viable strategy.

Meeting facilitators could allow folks to continue conversations that begin in meetings by email or on a discussion board for a certain amount of time, which would allow folks who need time to collect their thoughts to do that. In the past, I’ve been criticized for sending email follow ups after discussions in meetings for “dragging on a conversation that is over.” I’ve been told, “Too bad you didn’t bring that point up in the discussion when we could have done something with it.” These responses rely on the assumption that not contributing to the discussion in the moment can only be due to laziness or other negative characteristics.

At the end of chapter two of Mad at School: Rhetorics of Mental Disability and Academic Life, Margaret Price describes many clever ways of making class attendance and participation policies less ableist. Many of the strategies she describes could also be used in meetings.

What can you do to allow time and space for reflection in the discussions you facilitate or participate in?

grieving

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

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.
grieving

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].