Content warning: Descriptions of ableism

Across the first floor of Mudd Library, I spot Emil*. Emil*, with their chunky, natural hair twists, strawberry socks and poofy, sequined pink skirt, is hard to miss. We have to move spots because my laptop is near death and there are zero outlets in sight, so Emil* picks up their sparkly purple cane and we trudge over to Tech Express.

Emil* tells me that the ramp between Tech and Mudd is one of the few ramps on campus that’s fun to roll down in a wheelchair — fun but scary. Most ramps on campus, Emil* says, suck.

Tech Express is full, and no one’s wearing a mask, so we make our way back to Mudd, hoping to find an empty group study classroom. Emil* tells me not to worry — today’s one of their good days: a day where they only need a cane. Most days, they use a walker. For about two weeks during Fall Quarter, they were using a wheelchair.

Emil*, a Communication Sciences and Disorders second-year, jokes that they’re “studying me and myself.” They have lived with disabilities their whole life: They’re autistic and have anxiety, asthma and migraines. But it wasn’t until the summer of 2021 that their physical disabilities worsened.

“I was walking on the walls to get around my house,” Emil* says. “I couldn’t feed myself.”

Emil* has postural orthostatic tachycardia syndrome. Colloquially known as POTS, it’s a chronic condition characterized by dizziness, lightheadedness, abnormal heartbeats and fainting. The condition affects blood flow and is often diagnosed through a tilt test, where a doctor straps the patient onto a table and the table is raised to a nearly upright position for 20-60 minutes. During their tilt test, Emil* lasted six minutes before nearly passing out.

In the classroom, Emil* has two formal accommodations: extended testing time and alternative text forms. In a required three-hour chemistry lab, Emil* says they asked if AccessibleNU (ANU) could provide additional accommodations.

“Chem lab is tight quarters. It’s loud, there’s beeping noises from all of these machines, there’s a bunch of different classes doing different things. We’re supposed to be doing something within the few hours we have — multiple steps. Just all of it. It was just upsetting for every disability of mine,” Emil* says.

They were given a chair.

“Maybe they think I’m going to be lazy with my accommodations, but I literally need them to have an equal amount of schooling ability,” Emil* says.

At Northwestern, disabled students like Emil* say they are often denied the accommodations they need to learn. While students say they have had experiences with ANU advisers ranging from affirming to outright traumatic, many describe a culture of mistrust, misunderstanding and skepticism at ANU. Lack of transparency in the accommodation approval process means students are left wondering why they were denied the accommodations they asked for — accommodations that were often recommended to them by medical professionals.

NBN sent several requests to Northwestern’s media relations office to speak with any ANU representative, but all were unavailable for an interview.

Being disabled at Northwestern during a pandemic

Emil* is immunocompromised, so when the mask mandate was lifted on campus, they planned to ask for additional accommodations to protect their health in the classroom.

Emil* and their ANU adviser kept going in circles trying to schedule a time to meet. Emil* says they decided to give up after a student in a Discord for disabled Northwestern students explained how difficult it was to get accommodations for their immunodeficiency.

That Discord user was Maeve*, a fourth-year Weinberg student with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and what she refers to as a “list of acronyms” of various diagnoses for mental and physical disabilities.

“Maybe they think I’m going to be lazy with my accommodations, but I literally need them to have an equal amount of schooling ability.”

- Emil*, Communication second-year

Maeve* spent months attempting to get a mask mandate reinstated in her classrooms after her request for remote learning was denied. Her ANU adviser had not heard of ME/CFS, so Maeve* explained that ME/CFS is like having long COVID, but instead of COVID-19, she got ME/CFS from the flu.

She says her adviser didn’t know what long COVID was.

“How out of touch with disability issues do you have to be that in the middle of a pandemic, you have not heard of long COVID?” Maeve* says. “That’s just absolutely ridiculous.”

After getting her mother involved, Maeve* was finally able to get a mask mandate in her classrooms. But after everything she went through, Maeve* still sees maskless classmates, or classmates with masks hanging under their noses. This makes it difficult for Maeve* to focus — so difficult that she almost had to drop a class in Winter Quarter, when masks were required in the classroom, because a student would take their mask off when the professor’s back was turned.

“It’s a visual devaluation of my life and my health, that they’re just sitting there and announcing to me that they do not give a fuck if I get sick and am bed-bound for the rest of my life,” Maeve* says.

When the lines were long at the Jacobs Center, Maeve’s* disability made it difficult for her to wait long enough to get tested, so she would wake up early to beat the line, which was also a challenge. Maeve’s* immunologist provided documentation and a letter detailing her inability to stand in line, but Maeve* says ANU denied her alternative options until Spring Quarter, when she received access to the ADA area in the line.

“One time [my adviser] sent me a link to renting a wheelchair, and I was like, I can’t get a wheelchair to the testing center, because the bus is not safe for me to ride. And unless you want me to strap the wheelchair to the back of my bike, I don’t know how you expect me to get it there, because I can’t walk or self-propel myself all the way from my apartment to the Jacobs Center,” Maeve* says. “I don’t think I ever got a response.”

One Weinberg graduate student, Teagan*, asked for remote learning accommodations in Winter 2022 after her therapist recommended them for her obsessive-compulsive disorder (OCD). Her therapist submitted documentation to verify that Teagan’s* OCD was making it difficult for her to attend class in-person, but Teagan* says her ANU adviser told her there was almost no chance she would get remote accommodations.

“The whole vibe of the entire thing was they [were] conforming to this rule, that there are only a certain number of students who can have that accommodation, and we need to make sure it doesn’t create a slippery slope of more people getting it,” Teagan* says. “At one point, the guy told me there’s a lot of people who have been asking for this accommodation, and only three people have gotten it.”

Teagan* says her ANU adviser told her that, so far, only immunocompromised students had received remote learning accommodations. Although her adviser was sympathetic, Teagan* feels like the ANU office did not view her situation as legitimate.

“It was just a terrible meeting,” Teagan* says. “I was crying by the end of it.”

Mistrust and misgivings

Maeve* says her experience trying to get accommodations was indicative of the mistrust ANU has toward students seeking help. Despite Maeve* having already provided documentation of her ME/CFS diagnosis from her doctors, Maeve* says ANU asked for further documentation, including the lab tests used to diagnose her. Maeve* called this both “invasive” and “ridiculous.”

“It’s very invalidating, and it feels like there’s not a lot of trust,” Maeve* says. “Especially with conditions where I have had years of medical gaslighting, it’s like ANU’s little spicy contribution to my medical gaslighting pile.”

Medical gaslighting, or when doctors and medical professionals dismiss physical symptoms or blame them on psychological issues, is often experienced by students with so-called “invisible disabilities” like Maeve’s* — and like mine.

In the summer of 2021, I was diagnosed with narcolepsy without cataplexy. Narcolepsy is diagnosed through a grueling sleep study: After sleeping at a sleep center overnight, a nurse wakes you up. You’re asked to stay awake for an hour and then take a 20-minute nap. The nurse wakes you up after your nap, and then you do it four more times. Normal sleep latency is between 10 to 20 minutes, and the criteria for a narcolepsy diagnosis is a sleep latency of eight minutes or less.

My sleep latency is 2 1/2 minutes. In my first daytime nap, I fell asleep in 27 seconds.

ANU told me the sleep study and subsequent diagnosis were not enough evidence to get the “top-tier” accommodations I was asking for: excused absences and tardiness, extended deadlines when needed and the ability to record class in case I fall asleep. These so-called “top-tier” accommodations go through a board at ANU and cannot be given by one ANU adviser alone.

I have often found it easier and less emotionally taxing to ask professors for accommodations rather than going through ANU. However, professors are not always understanding.

In 2020, Eugenia Cardinale** (Medill ‘21) filed a Title IX case against a professor, largely because she says ANU was not advocating for her. Cardinale, who has chronic pain, anxiety, depression and borderline personality disorder (BPD), asked for an extension on a final project under an accommodation called “flexibility for condition flare-up.” While this accommodation is still available to students who were previously granted it, it is no longer offered to newly registered students.

Cardinale says she met with her academic adviser and her ANU adviser, both of whom suggested requesting an “incomplete” in the class. Her professor denied her ANU adviser’s suggestion that she receive an incomplete, and in response, ANU suggested she just drop the class, leaving Cardinale to seek help from others.

The professor, Cardinale says, would often make personal comments about her disabilities, suggest that she was getting special treatment and imply that if she asked for accommodations, she couldn’t be a good reporter. Once, while Cardinale was suffering from chronic pain, she says the professor told her she was being “lazy” for attending class in bed.

“It was really hard to deal with because she was validating a lot of internal insecurities and internalized ableism that I had to deal with,” Cardinale says.

Cardinale chose not to take her Title IX case to court and opted for the “formal conversation” option provided to her by the Office of Equity.

“I just wanted her to understand and for her not to speak to other disabled students the way she spoke to me,” Cardinale says. “I didn’t want to go through a full trial. I thought it would be very traumatizing. Because the whole experience was traumatizing.”

Going to class at all costs

Cardinale says her experiences with ANU made it difficult for her to trust them to advocate for her. She remembers being told by her ANU adviser to just go to class, regardless of whether she could be there mentally.

“There were times I would have a panic attack, puke and then go back to class,” Cardinale says. “There were situations where I would worsen my mental and physical health to push myself to go, because ANU made me feel like I was lying, or I wasn’t trying hard enough.”

Cardinale isn’t the only student who has been told to go to class, regardless of what their body and mind were going through.

If you’ve ever pulled two all-nighters in a row, you have an idea of what I feel like unmedicated. The average narcoleptic’s sleepiness and fatigue are comparable to how an abled person feels after being sleep deprived for 48 to 72 hours.

When I asked ANU for excused absences and tardies, I was denied. I was told by my adviser that being given pre-registration “would solve everything,” even though it was already three weeks into the quarter.

My adviser also told me I had a “weak case” for accommodations because I had only missed one class in three weeks and turned in all of my assignments on time. Apparently, the mental and physical burden I experienced to attend all of my classes and turn my assignments in on time was not a legitimate reason for accommodations.

The accommodations I requested were denied. It didn’t matter that I fell asleep in my Russian literature class freshman year every time without fail. It didn’t matter that narcolepsy is most often exacerbated by stress, and midterms were on the horizon. It didn’t matter that two weeks later, I was five assignments behind in one class, and I was taking an hour and a half nap before waking up to open my laptop and sleep through another.

In ANU’s eyes, I didn’t have it bad enough to need accommodations.

Accommodations not offered

In response to ANU’s request for further documentation, my therapist at the time filled out the “medical verification form” ANU provides and requested five accommodations.

“I believe these accommodations would help improve Grace’s mental/emotional well-being,” my therapist wrote to ANU. “She would benefit from the support of her university.”

ANU provided me with one accommodation, eight weeks into Fall Quarter: extended deadlines, but only temporarily while I was “figuring out medication.”

The next quarter I was on campus, I logged on to the ANU portal to find that the accommodation had been removed because I had to prove I was still “figuring out medication.” I was able to convince my ANU adviser I still needed the accommodation, but I have not received a deadline extension plan for one of my classes this quarter because my adviser never followed up with my professor.

At least I was able to get an accommodation.

Jon*, a Weinberg third-year, originally tried to register for ANU with a bipolar personality disorder (BP) diagnosis, but they never finished registering. Jon* was later re-diagnosed with BP and tried to request accommodations under their new diagnosis, but ANU told them they could not re-register until they finished their previous registration form.

Aside from not having the time, energy or emotional preparation to fight with ANU over the intake process, Jon* is no longer with the doctor who diagnosed them with BP and doesn’t have the information from their previous diagnosis, which Jon* says has prevented them from registering with ANU.

“ANU feels like some sort of secret society where they won’t give any information, and they’re technically there, but who knows,” Jon* says.

In other situations, students say that ANU only provides a narrow range of accommodations for their specific diagnosis, diverging from ANU’s claim that accommodations are tailored to each student’s needs. Vaibhavi Hemasundar, a Medill third-year with attention-deficit hyperactivity disorder (ADHD), was offered extended testing time, but her ADHD doesn’t impact her ability to take a test within a certain timeframe — it impacts her ability to remember deadlines.

“The assumption is, ‘Oh, that’s just what accommodations look like.’ Well, that’s not what accommodations look like for me,” Hemasundar says. “That’s not what helpful accommodations will look like for me.”

Jon* feels that speaking to professors one-on-one is less emotionally taxing than going through the ANU registration process, especially given ANU’s reputation.

“There has to be a way to register for ANU that does not require a ton of emotional and mental labor for students,” Jon* says. “That’s just not accessible.”

Accommodations offered in theory, not in practice

Certain accommodations, like extended time for testing, are fairly simple to get, according to some students with testing accommodations. However, the testing center for students with those accommodations closes at 4 p.m., meaning that when professors schedule exams later in the day, accommodations often fall to the professors and their TAs.

In some cases, students who need accommodations are all placed in the same room together, regardless of their specific needs.

“My reduced distraction environment was the same size as most of my other classes and the same distraction levels, because they put all the extra time and reduced distraction kids in one room to distract each other,” Maeve* says.

While Emil* loves the testing center employees and often chooses to forgo part of their extended testing time to go there when they have afternoon exams, they pointed out that the building itself is not accessible for wheelchair users.

“You know those automatic door buttons that you press? They don’t work,” Emil* says. “Literally the building that houses ANU — the buttons don’t work.”

“There has to be a way to register for ANU that does not require a ton of emotional and mental labor for students. That’s just not accessible.”

- Jon*, Weinberg third-year

Emil* was once assigned to a study group that met in Locy Hall, which is notoriously inaccessible because it has no elevators or entrance ramps. They asked for an accommodation. They were taken out of the study group, but they weren’t offered an alternate study group or location.

Emil* often finds it difficult to get around campus, even in buildings Northwestern labels as compliant with the Americans with Disabilities Act (ADA). Some days, Emil* physically cannot get to class on time due to everyday inaccessibility on campus.

Once, this inaccessibility caused Emil* to miss class entirely. When trying to get to a class in Main Library, Emil* was not able to get on the elevator. The wheelchair-accessible elevator in Main Library is manually activated by an operator, which is “expressly prohibited” by ADA standards.

“I was looking out the window and banging the window and saying ‘hello,’ and they just stared at me. So I was like OK,” Emil* says. “I just didn’t go to class that day.”

Disability justice on campus

While Medill third-year Vanessa Kjeldsen is aware of ANU’s reputation among disabled students on campus, she wants people to know that her ANU experience was nothing but positive.

Kjeldsen transferred from Boston University, whose Disability and Services Director Lorre Wolf was accused of being “dismissive” and “derisive” toward students requesting accommodations, according to students quoted in Boston University’s newspaper The Daily Free Press. When Kjeldsen registered with ANU, her initial intake call with her adviser shocked her “in the best way possible.”

“I had a lot of trepidation going into that call, because of how I had been burned before, where I had to fight for my rights,” Kjeldsen says. “And I was amazed at how kind and supportive [they were] and how much they listened.”

Kjeldsen says that students often hold misconceptions about the purpose of accommodations, and she hopes more people will understand that they are neither a weakness nor an unfair advantage.

“Accommodations don’t make you any less,” Kjeldsen says. “People think others are abusing the accommodation system to get ahead, but accommodations’ purpose is to even the playing field. It’s really unfair if the track star is starting ten meters ahead. All you’re doing is moving up the start line to everyone else on the team.”

Other disabled students say they hope the University will start to see accommodations as a way to even the playing field for all students.

“What benefits people with disabilities benefits all.”

- Michelle Yin, SESP professor

“I want ANU to be more generous,” Emil* says. “I don’t think there are students showing up to ANU with the intent of cheating the system.”

Maeve* wants more guidance from the administration, especially when it comes to missing class during the pandemic. Maeve* says she heard a student at the Jacobs Center say they waited until after their midterm to take a COVID-19 test, because she was not going to let a positive test make her miss her midterm. Maeve*, who remembers worrying about missing a midterm while in the emergency room because her professor told her she couldn’t reschedule, says she can empathize.

“I completely understand that fear, especially from having missed a lot of things from being sick, and I place that blame on the administration,” Maeve* says. “There needs to be more support so that students feel comfortable to stay home when they’re sick.”

Teagan* says her experience with her ANU adviser made it clear to her that the institution has not considered universal design, a process by which environments are designed to be accessible to everyone, regardless of age, disability or other factors.

“It just felt like a bizarre experience. If this person is working in an accessibility office, shouldn’t they be fighting for the University to create policies that are helping students, rather than enforcing policies that are not helping students?” Teagan* says.

Michelle Yin, a SESP professor who focuses on disability issues, says many products built with universal design in mind have benefited society at large. For example, text messages were originally built for people with hearing impairments.

“What benefits people with disabilities benefits all,” Yin says.

Emil* says there are a lot of simple, practical solutions the University could undertake to make campus more accessible for physically disabled students. The Campus Loop, for instance, would make Emil’s* life a lot easier if it ran during the day. They also think a guided accessibility tour could help new disabled students navigate the challenges of day-to-day life on campus, as Emil* says it was difficult and time-consuming to figure out the easiest way to find ADA accessible ramps and other accessible paths on their own.

“One thing I can ask of [ANU] is just, anytime they go somewhere on campus, test the button. See if it works,” Emil* says. “Just do the bare minimum.”

* Names have been changed to preserve anonymity.
** Editor’s Note: Cardinale previously contributed to North by Northwestern.


Credits

Writing Grace Deng

Editing Emma Chiu & Naomi Birenbaum

Print Design S. Kelsie Yu

Web Design & Development Maren Kranking