Monthly Archives: June 2021

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

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:

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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].