Tag Archives: ableism

grieving

Academic Ableism: The Expectation that Crips Be More Thankful

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

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

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

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

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

grieving

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

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

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

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

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

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

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

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

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

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

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

grieving

Disability and Ableism in Academia: Whose Problem is Access?

I want to tell a few stories about getting to the writing center I direct to illustrate some of the ways ableism is baked into academia.

The main location of the writing center is on the fourth floor of a building on campus. There are two ways to get to the fourth floor:

  • You can take the elevator located on the south side of the building directly up to the fourth floor. This is easy enough if you enter the building from the south side’s main entrance. However, if you enter the building from the north side’s main entrance, you will find no indicators that you need to go all the way through the building to the south side to find the elevator.
  • You can take the stairs, but you’ll likely be confused when the large, prominent staircase on the south side of the building ends on the third floor. Once on the third floor, you’ll need to wander around to find the place, behind doors, where the stairs continue to the fourth floor. Again, you’ll find no indicators to help you. If you have any kind of impaired mobility, you will likely find this experience incredibly frustrating.

If you make it to the fourth floor, you’ll find that you have to get down a hallway that is technically wide enough to accommodate a wheelchair or walker; however, it is lined with large chairs, shrinking its width by a third and adding a jumble of visual clutter. These chairs are often not lined up neatly against the walls, so their corners may be jutting out awkwardly. Or, in some stretches of the hallway, you may find chairs on one side of the hallway and a few feet later, chairs on the other side of the hallway, meaning you can’t just move in a straight line down the hallway but rather need to navigate like a pinball through the gauntlet—easy enough for some, but very complicated for folks who use assistive devices.

As a vision-impaired person, I find the visual clutter of the chairs to be anxiety-producing, but it doesn’t keep me from getting to the writing center. However, employees and clients with mobility challenges have regularly had trouble getting down the hallway. The hallway belongs to the English department, so three years ago, I told the department’s chairperson that the Writing Center would be happy to purchase slim benches to replace the chairs in the hallway, improving accessibility for everyone.

While the department chairperson was very sympathetic about the access issues presented by the chairs, the benches were never ordered. Even with the money being provided by someone else, the department chair said replacing the chairs with benches simply wasn’t a priority. The department manager was actively resistant to replacing the chairs, telling me, “There’s nothing wrong with these chairs.” When I told her the chairs were a problem, she said, “Well, how many people are really affected? Can’t they go to one of your satellites?”  

These stories illustrate some typically ableist ways that academia engages with accessibility:

  • The challenges of finding the elevator or figuring out where the stairs from the third floor to the fourth floor of the building are seen as the problem of the individual with mobility issues. Although I have complained to the facilities department multiple times, no signs have been added. It’s every individual for themselves. I’ve seen this situation replicated on every college campus I’ve ever been on. Buildings may have ramps, but where they are located is often a well-kept secret; how ironic that the least mobile among us must often circle a building multiple times to find the accessible entrance. A simple sign pointing to the ramp would be lovely. Having a ramp instead of stairs would solve the problem completely (for more on stairs leading to academic building entrances, see Jay Dolmage’s discussion in Academic Ableism: Disability and Higher Education.) These building access issues exist because buildings are designed with only able-bodied people as users in mind, and the lack of signage about accessible features sends the message that people who aren’t able-bodied can enter the building only if they’re willing to make the extra effort to find the accessible entrance.
  • Making spaces accessible is seen as important but not a priority. “Important” here is akin to the “thoughts and prayers” offered by gun rights advocates in the wake of mass shootings—just words. The irony of the department chairperson who does not see making the hallway more accessible as a priority at a university that advertises itself as accessible is interesting. I believe “accessible” here is just a fancy way to say “affordable” and not to be taken to include actual physical accessibility. Even in advertising itself as accessible, the institution imagines only an able-bodied student.
  • The department manager who didn’t understand why perfectly good chairs should be replaced was prioritizing furniture over people. She located the problem in the people who couldn’t navigate the hallway rather than in the hallway crowded with chairs. Rather than getting rid of the chairs, she wanted to get rid of the people, sending them to a satellite. (Considering the difficulties I outlined of simply getting to the fourth floor of the building, I am particularly outraged that someone would suggest that a client who made it that far only to be stymied getting down the hallway should be sent to another building.) The department manager’s assumption is that people who aren’t able-bodied are less important than chairs. Let that sink in: people who aren’t able-bodied are less important than chairs.

To summarize: Access is consistently seen as the problem of the disabled person. Accessibility is “important” but not a priority. Disabled people (and their time and effort) are not important.

In a future entry, I will suggest some actions the average academic can take to push back against this ableism.  

academic life/work, caregiving, grieving

Specific Actions to Change the Way Caregiving is Understood in (Academic) Workplaces

1 Comment

I was both heartened and saddened by the responses I received to my last post on being a caregiver in academia. Many fellow academics and plenty of folks in other fields reached out to me to say that they, too, are caregivers and they wish that part of themselves didn’t have to be so compartmentalized. With that in mind, this post focuses on specific actions we can take to change the way caregiving is understood in academic (and other) workplaces.

Before I get to those recommendations, however, I want to mention a piece on caregiving that the New York Times published just a few days after my post: “The Costly, Painful, Lonely Burden of Care” by Mara Altman. Altman reports that the economic value of caregiving by family members is upward of $470 billion a year, and the bulk of this work is performed by women. This means that women are more likely to suffer the consequences I mentioned last week—stigmatization and professional isolation—as well as burnout, social isolation, financial consequences, and “negative health impacts.” Altman interviews Kate Washington, author of a new book on burnout, Already Toast: Caregiving and Burnout in America, about these costs. I was particularly struck by a statement Washington made on how the economic value of all the free caregiving provided by mostly women is minimized:

There is a narrative that the caregiving work we do is invaluable and the gift of caring is its own reward, but the flip side of something being priceless is that you paradoxically strip it of all its value. It’s so valuable that we can’t put a monetary price on it, which then takes away the economic worth.

Mara Altman, “The Costly, Painful, Lonely Burden of Care”

Because we live in a neoliberal society, we are conditioned to devalue anything without economic worth. You would think that academics, of all people, because so much of the work we do we do for “free” (all that service!), would be sensitive to this, but no, neoliberalism is in the air we breathe and so we are conditioned to not notice these discrepancies.

Which brings me to those specific actions I want to focus on:

  1. Talk about caregiving in your normal voice. Former First Lady Rosalynn Carter highlighted how normal caregiving is when she said, “There are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.” It is very likely that every one of us will be or need a caregiver in our lifetime. In other words, caregiving is normal, not strange or embarrassing or the result of poor choices. Acknowledge caregiving as a valuable activity. If you are not a caregiver, talk about it in your normal indoor voice rather than a hushed one. Every time you talk about caregiving in a hushed voice, you imply that it’s something that should be kept quiet. If you are a caregiver, and if it feels safe to you to do so, talk about caregiving the same way you talk about your other non-work activities. If the only time we mention that we are caregivers is when we need support, the idea that caregivers are needy drains on productivity is reinforced.
  2. Notice and label ableist tendencies that stigmatize caregiving. These tendencies include bragging about not taking leave, shaming folks who do take leave, and assuming that all time that is not accounted for by time-bounded work activities is “available.” When I catch myself doing these things, I find it helpful to identify the assumptions I’m working from and fact check them, so I might say to myself, “Seeing that colleague as lazy for taking so much leave assumes they don’t work hard when they are not on leave. Is that true?”
  3. Connect with others who are caregivers in academia. This is tough because, as I said last week, we don’t talk about caregiving in academia and folks without tenure and others in vulnerable positions may feel the risk involved in making the caregiver part of their identity visible is too much. When those of us who do have job security and other privilege make the caregiver part of our identity visible, we make it easier for others with less privilege to do it. I’ve added the word caregiver to my twitter profile and website tagline to make that part of my identity more visible and make it easier for other caregivers to find me.
  4. Create workplaces that support caregivers. One of the simplest yet most powerful ways to support caregivers is to talk about caregiving. As I said last week, when we don’t talk about caregiving, it becomes harder to talk about caregiving. The opposite of that is also true: when we talk about caregiving, it becomes easier to talk about caregiving. When it’s easier to talk about caregiving, it’s also easier to identify caregivers in the workplace, and it’s easier for them to ask for the support they need. For faculty, one of the most challenging forms of support we need is teaching coverage; when I became a caregiver, a colleague who is herself a caregiver told me she was available to cover my classes if I needed it. When such a program doesn’t exist, the free labor of caregiving leads to the free labor of kind colleagues who are willing to cover classes. All that free labor tends to be women’s free labor. A formal program to make teaching coverage available to those who need it would go a long way toward supporting caregivers and closing an equity gap in academia.