But You Look Fine: A Reading List

July 15, 2019 11:36 PM

About Disabilities, Accommodations, and School. "Because of her reaction, I assumed all professors might view my health condition as a nuisance. I became skilled at performing wellness, enough so that even people in graduate school made sly comments like, I’ve never seen you this way after reading my personal essays about my neurological symptoms, as if they, too, needed reassurance that what I had experienced was real."
posted by Little Dawn (21 comments total)

Thank you for this post and the interesting reading resources.

I’m a US college professor and joyfully teach students with disability accommodations every semester. It pains me to hear or read of other faculty that do not treat such students respectfully, or who do not extend the full measure of the legal and institutional support that should be available. I have a disability of my own (COPD) that affects nearly every aspect of my life, so I generally feel a profound sympathy with students struggling with health issues.

On many occasions, I’ve encouraged students — who have revealed to me that they are struggling with a particular issue — to avail themselves of the student services on campus such as counseling or disability accommodations. These conversations are among the most fraught, because of the way accommodations are viewed by some students as stigmatizing.

For any students who are struggling with such a situation, please do avail yourself of all of the services the college provides, including accommodations. We have put them in place for you; they are your due.

And if any faculty member is being a jerk and gives you any static about it, talk to a college counselor or student affairs disability resource representative. They can be your advocate to make sure you’re being treated right (and according to the law).

(If anyone would like to chat more about this or ask questions, please feel free to memail me.)
posted by darkstar at 3:16 AM on July 16, 2019 [16 favorites]

I struggle many semesters to get students who would benefit from accommodations to go to disability services and get the paperwork so I can apply appropriate measures. One thing I always do is share my own brain damage with my classes, partly because it makes the process of putting names and faces firmly together slow, but also to remind them that many “actionable” disabilities are not visible, and I can’t know what I’m not told.
posted by GenjiandProust at 5:05 AM on July 16, 2019 [15 favorites]

Seconding darkstar and GenjiandProust here. I teach a university practicum course in a public school setting and often, my students with disabilities will make excellent teachers if they can only weather the challenges of getting through the program. Many of my students refuse to take advantage of accommodations, and I know why but I wish they wouldn't; I spend a lot of time building trust and getting them to confide in me so that I can at least make my own adaptations, if not officially.

My own neuroatypical style was devastating to my performance in school and it took me years to figure out what worked for me. My dissertation chair refused to believe me when I told her about it. My mother refused to believe me. I'm not feeling particularly victimized, let me hasten to say. Just that denial is powerful and disability is not obvious (and often annoying) even to other people who have their own challenges.
posted by Peach at 5:07 AM on July 16, 2019 [8 favorites]

Ohhhh, fuck fuck fuck, I'm still reading this but boy did it resonate with me both as a teacher and also as a PhD student who does so much fucking work masking her own disability. Oh, fuck, I feel so seen. The worst thing about putting in that kind of superhuman effort to perform without letting on that actually you are disabled is that when you finally can't do it anymore and start asking for just minor accommodation, you get treated like you're being lazy or malingering because you didn't need it before. Oh, oh, oh.
posted by sciatrix at 5:31 AM on July 16, 2019 [22 favorites]

It's a great essay and showcases a set of what look like really good resources and memoirs about the issue. As at least one of the books reviewed highlights (and in comments above), this isn't just an issue during grad school, but continues for anyone staying in academia (ie, job searching, tenure and promotions, etc).
posted by Dip Flash at 6:08 AM on July 16, 2019 [3 favorites]

Like others, I teach at a university and wish *to God* that students would avail themselves of the accessibility resources available. I understand the impetus to want to conceal a disability, but it makes things easier for everyone involved if I can apply a full court press with the University on the students' behalf. Being signed up for disability accommodations helps so much with that.

I have a student trying to write a deferred exam right now - I say trying because he's unwell and keeps having to put off the date of the exam. But he's not sought accommodations with the university, so defending him to the administration gets harder with every time he has to defer.

That said, I sympathize with him; he's trying to get his degree in his off-hours after work so that he can advance at work. It's like Atlas trying to hold up the world.
posted by LN at 6:30 AM on July 16, 2019 [4 favorites]

There's also a question of how to get helpful accommodations and avoid unhelpful ones. People with the best will in the world to help, can make things so hard.
posted by elizilla at 7:25 AM on July 16, 2019 [5 favorites]

I don't have personal experience with it but it's clear to me that the massive leap from high school to college is problematic in terms of accessibility. In broad terms, high schools (and schools that precede them) are required to proactively identify and support students with disabilities, largely because those students are minors and therefore they need adults to advocate for them and take (some) responsibility for them. In college, the onus is entirely on the student to identify themselves as disabled because they're adults. The broad concepts (adults must help children, adults must be responsible for themselves) are fine but (a) the shift happens immediately, probably without warning in some cases, and (b) it's clear that the concepts can't apply to all people. I have wonderful colleagues who work in the spaces and gaps that these policies inevitably leave and it's difficult but important work. But the speed of the change from "we're responsible for proactively searching for and identifying students' special needs" to "you have to do that yourself" is so rapid that it always makes me worry that it's unfair and unmanageable for many people. I buy into the broad principles at play but surely we can find a more humane way of making the transition...?
posted by ElKevbo at 8:29 AM on July 16, 2019 [7 favorites]

In college, the onus is entirely on the student to identify themselves as disabled because they're adults. [...] I buy into the broad principles at play but surely we can find a more humane way of making the transition...?

I think the most important tool I brought into college instruction from my work as a legal aid attorney is the concept of "client-centered lawyering." In my M.Ed program, I learned that a very similar philosophy and practice is referred to as "student-centered teaching," and I think it represents an opportunity to accommodate all students, because (at least in how I've come to understand it) the core idea is to design instruction in a way that encourages all students to flourish.

On a related note, I found a resource from the Vanderbilt University Center for Teaching that begins with the premise, "if a university were to adopt a social or cultural perspective on disability, the goal would be to increase accessibility for all students, regardless of whether they have a formal diagnosis. The focus would be on accounting for human variation by design." This guide provides an in-depth overview of many issues related to higher education and students with disabilities, and offers a wide variety of resources, including template syllabus language from Tulane University that is designed to promote inclusion:

Your success in this class is important to me. We will all need accommodations because we all learn differently. If there are aspects of this course that prevent you from learning or exclude you, please let me know as soon as possible. Together we’ll develop strategies to meet both your needs and the requirements of the course. I encourage you to visit the Office of Disability Services to determine how you could improve your learning as well. If you need official accommodations, you have a right to have these met. There are also a range of resources on campus, including the Writing Center, Tutoring Center, and Academic Advising Center.

Thurber, A. and Bandy, J. (2018). Creating Accessible Learning Environments. Retrieved July 16, 2019 from https://cft.vanderbilt.edu/guides-sub-pages/creating-accessible-learning-environments/.
posted by Little Dawn at 11:00 AM on July 16, 2019 [13 favorites]

My health issues didn’t start until my 30s so I didn’t have to navigate this as a student, but France is far behind Britain on understanding disability, I am waiting for this badge to be delivered that says not all disabilities are visible, and will be wearing it when I get the Eurostar, as the ignorance and incompetence on the France side has been stunning. A friend who uses a wheelchair doesn’t have the same issue, but I was told in June that when they can’t see anything wrong they assume people are lying.
posted by ellieBOA at 11:18 AM on July 16, 2019 [4 favorites]

It’s not just that not every disability is visible; it’s also that many aren’t constant. A person with MS, for example, may have good days and bad days, and some of those days are cognitive days, and some are energy days, and some are physical days. A student with, say, migraines may have weeks of “normal functionality” followed by a day or weeks of difficulty. It’s hard to advocate for yourself when you have to say “I might have a seizure/episode/relapse today/this week/this term; hard to say.”
posted by GenjiandProust at 11:27 AM on July 16, 2019 [21 favorites]

This is a great resource, and thanks, Little Dawn, for that link.
My syllabi (and in-class intro) refer to our strong center on campus, but I try not to expect students to "avail" themselves of accommodations; I state that I believe students about their experiences and needs, that I don't need paperwork from the center, and ask them instead to help me shape the class experience to be as accessible as possible to those who are there.
I'm really imperfect in this set of concerns, and I super respect the professionals on my campus who help ensure that students' needs are met, but I hope we can resist a very legalistic and individualistic approach to accommodations. That focus should be a backstop, but our campus culture should lead on this.
posted by Mngo at 11:28 AM on July 16, 2019 [5 favorites]

Another issue I've seen is that even once the student connects with disability services is that the department may be chronically underfunded and understaffed--which can mean long wait times, rushed-feeling appointments, errors, etc. And universities classes wait on no one--someone may be waiting for their actual appointment to get their official accommodations and meanwhile, there are classes to attend, notes to take, papers to write, articles to read, tests to take . . . .
posted by carrioncomfort at 11:36 AM on July 16, 2019 [8 favorites]

I'm about to enter my second year of grad school. I actively engage with disability services at my large university and to say they are sometimes unhelpful, or even dangerous, is...true? It's not just a matter or signing up and you're all good, and what you need is going to be presented to you. What do you do when you don't know what you need? What do you do when, as has been said, your good days and bad days are variable? What if you know your professor whose positive opinion you need will think differently of you if they know you're disabled unless you prove yourself high functioning first? Professors might not think they're that person, but ableism is insidious even in the most open-minded places.

When the disability services office offers me extended test time and nothing else, when I get yelled at by my school pharmacy for needing an emergency refill on drugs they don't like and lecture me for taking, when a professor won't record class for me on a day I have to miss to get the other drug that keeps me alive because it can't be replicated on a recording or whatever, what am I supposed to do? When your school can kick you out for being too sick, or sick in a way that doesn't follow Good Disabled Person Standards, what does anyone do?

We can't always trust our schools to advocate for us, even when we do advocate for ourselves. In my experience the larger issue is not so much shame, as survival.
posted by colorblock sock at 12:49 PM on July 16, 2019 [13 favorites]

I got caught in a documentation loop, at both the 2-year and 4-year schools I recently attended. While many professors accepted my requests for accommodation (audio recording of lectures, wearing earplugs during exams) with no documentation, there was always one every term who needed to be told by Disability Services what I needed. And the SDS people wouldn't do anything without a statement from a doctor, and logging it all in my educational records. And I had been paying for mental health stuff all cash for years specifically keep it out of records that would follow me.
It was easier to just research the instructors ahead of time and avoid the ones that pushed back, if possible.
posted by ApathyGirl at 4:19 PM on July 16, 2019 [4 favorites]

I'm autistic and I've just quit university right before the end of my degree. All available support is exhaustingly social. I couldn't deal at all any more. Besides, the whole system is wrong through and through - its timeboundness especially, the hierarchy, and the institution. It pushes back at every single available opportunity.
posted by lokta at 3:57 AM on July 17, 2019 [7 favorites]

The smug belief in the system emanating from the first two comments is breathtakingly rage-inducing. Oh, you ~joyfully teach~ and ~encourage~ and tell students that running through a dark bear trap factory is the best way to stay fit. Do you genuinely feel proud of that?

There is a massive, unspeakable gap between the treatment of people who have medical disabilities, even invisible ones, and people who have learning disabilities. It's obvious just in the comments here. Disability Services offices do not exist for students. They exist to fulfill the school's legal requirements. 'Dangerous' is an accurate description. 'Pushes back at every opportunity' barely does it justice - many offices make their own opportunities.

How about, instead of blithely telling potentially disabled people who are reasonably reluctant to pay large sums to feed themselves face-first into the woodchipper that of course it will be helpful, you consider actually helping them with the process? Maybe you could help them figure out how to find a for diagnosis, or explain the paperwork, or help them get a friend to attend meetings so they have someone neurotypical there to take notes and figure out when they're being lied to?

I have a manila folder. It contains papers that cost more than my car. If I added up the value of the person hours it took to get those papers, I would have a house downpayment. That is frequently what it takes to get disability accommodations in the USA. I could not have done this as a college student. I did not have the capacity, financial or organizational or emotional, to attend school and manage seeking accommodations. Fortunately I didn't have to, my parents had already fought that fight, and DSS' initial attempt to pretend I didn't exist was terrifying but ultimately easily dealt with. I can't imagine how exponentially worse it all would have been if I'd never had to do it before.

As someone with learning disabilities, the idea that some professors are cheerfully encouraging students to uniformly apply for accommodations because they have a medical disability and believe that disability services are uniformly helpful is horrifying.
posted by Ahniya at 9:37 AM on July 20, 2019 [4 favorites]

I mean, even for students with medical disabilities... I remember a student who had migraines, and he'd gotten documented and everything, but he'd had enough flak from actually requesting accommodations that he just figured that the best he could do was grit his teeth, skip his morning lab when they migraines were acting up, but do his work as best he could without attending class. We checked in with him, transferred him into my afternoon section, made a minor accommodation for his being perpetually 15min late as he scrambled across campus from another class, and he was one of the best students I've ever had. But there are faculty members who would whine and drag their heels over even that.

I've personally had a faculty member tell me, when I was interviewing to TA with him, that sometimes students come in and request extra time on exams, and he just tells them that he can't do that and waves them off. I was horrified. I've had other faculty members tell me during a discussion of ADA requirements with the department that if students don't sign up for increased testing time at the testing center within the first week of classes, all the spots fill up and there won't be any spaces available.

My partner's in school now and has both documented learning and medical disabilities. I've observed pushbacks on accommodations as minor as "allow student to write in all caps, with capital letters designated by either a large size increase or an underline," or "student must be allowed to record lectures." There is so much resistance to basic ADA requirements in education--well, and everywhere. I hear it's worse in countries without an equivalent to the ADA to lean on, too.

And yeah, the documentation can be hellish, and there are plenty of parents who will actively try to hide diagnostic paperwork from school records or otherwise lose the paperwork for diagnoses under the mistaken belief that it is more helpful not to have a paper trail. Parental support is not remotely a guarantee for any kind of disability, in my experience.
posted by sciatrix at 11:55 AM on July 20, 2019 [5 favorites]

I feel like I should add: my school gave us a Goofus and Gallant style childish cartoon brochure that to paraphrase was "Mary signed up for Disability Services, and she gets straight A's! Mary is always responsible about taking care of her health, and understands the consequences if she doesn't! Colin didn't sign up for Disability Serves, and he was expelled for assaulting a teacher during a manic episode!" I wish I was exaggerating at all.
posted by colorblock sock at 1:19 PM on July 22, 2019 [3 favorites]

No, I totally believe that. It's intensely frustrating, especially when you have to explain about stigma to well-meaning jackoffs who seem to believe that anyone they deem sufficiently disabled will be taken care of, but of course those people over there are totally exploiting the system and just making up reasons to get things that give them an unfair advantage over the rest of us, or at least demanding things that are just too expensive or too much work to achieve. And of course these people will tell you earnestly that of course you can tell the difference between those two groups, it's obvious, and no other person could totally make a different judgement from them!

Ha. Ha. Ha.
posted by sciatrix at 1:34 PM on July 22, 2019

That sounds 100% believable, colorblock sock.

Case in point for all professors wondering why students oh so inexplicably don't want to apply for or use accommodations: I have just spent $XXXX and about 50 hours re-upping my documentation for learning disabilities. The things I needed to have:
* Knowing how to pick an un-biased and cooperative tester who would not dismiss my needs because I don't fit their mental image of 'disabled' and would be willing to have some back and forth as we clarify things. And they still don't actually believe me about some things, but they're willing to suggest the accommodations I need so I'm just picking my battles.
* The free time and cash to take the tests. I used vacation hours for this.
* Documentation of disabilities going back many years. Childhood impact is literally part of the diagnostic criteria for many disabilities. Others, people just don't believe you if you don't have a history of it.

I haven't even started negotiating with the organizations I need accommodations from. That'll be at least another work week every year to re-prove disabilities don't spontaneously heal themselves. Plus whatever time and energy is soaked up by people 'losing' the paperwork or flat out calling me a liar.

My disabilities are so apparent that strangers casually chatting with me can tell. We have still had to re-fight this battle every few years since before I can remember. It is always an indescribable goat rodeo. People are reluctant because of the very real and present risks that trying to get accommodations opens you up to. And concerns about how other people will treat you once they know are very valid. Dismissing all this as ~oh those silly children worried about stigma~ is offensive.
posted by Ahniya at 8:57 PM on July 29, 2019 [3 favorites]