Warning and Advice — Disabled Students in Higher Education

I’m a disabled student writing to warn other disabled student to avoid my program, the Johns Hopkins Whiting School of Engineering.

I’m writing because I believe I have a moral obligation to do so. This is also a general warning to parents, and prospective college students and graduate students that colleges and universities often do a poor job obeying laws that protect equal access to education for the disabled. What you read below about the Whiting School also occurs at many other institutions.

Hopkins promises disability accommodations, then fails to deliver. Professors often ignore the school’s requests to provide accommodations. Many say they forget; a few refuse outright. The school doesn’t have an effective way of dealing with this. Sometimes the administration eventually speaks with the professor, even convinces them to implement accommodations; this usually takes two weeks to a month, by which time I’ve usually fallen behind in the class. Sometimes I have to drop the class altogether. I’ve never found a way to get my tuition back in these cases.

I’ve had to drop at least four classes because of accommodation failures. My experience is that, in practice, the Whiting School does not recognize that disabled students may fall behind or academically suffer in other ways if the school fails to provide disability accommodations. So if a professor fails to provide accommodations, I’m often on my own.

I’m hard-of-hearing and have ADHD. If a professor doesn’t face forward when they lecture, I have difficulty understanding them. If an online class or office hour doesn’t have a skilled live-captioner, I will probably miss a great deal of what is said. If recorded audio doesn’t have a transcription, I’m going to have trouble understanding it.

I’m also fairly capable. I have a masters from Columbia and worked six years in editorial at The New Yorker magazine. My writing has appeared in the LA Times, the San Francisco Chronicle, Teen Vogue, Publisher’s Weekly, The New York Sun, and other publications.

Dragging out my credentials bothers me, but I fear that people reading this will see “hard-of-hearing” and “ADHD” and assume I’m not a together person. I’m pretty together. I may make more money than some of the professors I’m complaining about, and I’ve certainly published more than most of them. In the long run, I’ll be fine. I mean, I cry and sometimes have nightmares over how Hopkins has treated me, but I’m old enough to know I can survive tears and nightmares.

The school has never acknowledged that failing to provide other disability accommodations impacts me as a student. They simply won’t answer the question. When I ask for extensions because the school has failed to provide accommodations, I have to beg. About half the time, the answer is no.

The school often mis-schedules live-captioners. Usually the live-captioners are good — sometimes they’re not. The classes and office hours are supposed to be recorded and transcribed. Sometimes this happens; sometimes it doesn’t. And transcriptions that arrive two weeks to a month late do me no good. During a pandemic where everything is online, this is a real problem. At least in the classroom, I can do my own recording.

So it’s left to me to convince professors to face forward, to record online content. I have to convince professors to submit audio for transcription. Many professors take this as a student telling them how to teach their class; most hate it; a few retaliate.

My department’s attitude toward disabled students showed up clearly in two situations: their former stance toward private testing rooms at the Applied Physics Lab (APL) and how they’ve dealt with my privacy under Federal law.

I take in-person tests in a private room and receive time-and-a-half on timed exams. In APL, this used to mean putting me in a room by myself. The problem is that random people would wander in, and I’d have to convince them to leave while I was taking my exam. Sometimes they didn’t want to leave — I often took my exams in the optics lab, and people wanted to look at the equipment.

Once a group of drunken engineers who were at APL for a conference tried to kick me out of my exam room. They wouldn’t leave — kept insisting they’d scheduled the room. (APL hosts catered conferences; the drinks in their hands smelled like beer, and they acted drunk.) Three men — all bigger than me — against one woman. One put their hands on my shoulders and pushed me. I finally convinced them to leave. They came back and tried to kick me out again. I convinced them a second time to leave.

I bombed the exam — my program doesn’t give second chances in these cases.

I’ve told many administrators about this, yet Hopkins has never acknowledged it was a less-than-optimal situation. It took two years of haranguing them to convince them to provide me with an exam proctor to keep random people out.

Many of my professors feel they can discuss my disability accommodations during class lecture. This practice breaks many Federal laws protecting both medical and student privacy. I pass as not disabled, which is my right, but my professors have told close to 70 students that I’m disabled and receive disability accommodations. They’ve done so without my consent.

One time this happened, I spoke with the professor quietly in the hall after and asked him to stop. He screamed at me that he could talk about my disabilities during lecture if he chose because of freedom of speech. He screamed and got right in my face — I scanned the exits because I felt physically afraid and thought I might have to run away.

Again, I’ve told many administrators at Hopkins about this. None have acknowledged it was a less-than-optimal situation.

Hopkins will ask professors who discuss my disabilities and accommodations during lecture to stop, but they don’t seem to let professors know that this is against the law in the first place. Telling professors to obey the law isn’t my job; when I do so, they either ignore me, or retaliate. Adding to the problem is that professors sometimes retaliate against me even when Hopkins speaks with them on my behalf to try to get them to obey the law. There doesn’t appear to be any consequence for the professor if they break the law, nor if they retaliate. The consequences are all for me.

Part of the fallout is that it makes group projects difficult; no one wants to work with the disabled student that the professor outed, screamed at, and treats strangely. Sometimes group projects are a large part of our grade.

Let me be clear: twice at Hopkins I’ve been in situations related to my disability where I had reason to believe I was in physical danger, yet I haven’t encountered anyone at Hopkins who sees this as a problem.

Unofficially Hopkins has pressured me not to take complaints about these privacy violations further, and they didn’t tell me I had the option of filing a Federal complaint. Had I known more when the last event occurred, I would have filed a complaint under the Federal Educational Records Privacy Act, but FERPA has a time limit on filing. Unfortunately, I let Hopkins pressure me into silence and didn’t realize there was anything I could do under after this filing window passed.

Disabled students at Johns Hopkins University are effectively barred from filing Civil Rights complaints over mistreatment due to disability. Students claiming mistreatment due to race, sexual orientation, gender orientation, age, background, religion, country of origin, or really anything else, can file a complaint through Hopkins Office of Institutional Equity (OIE) and work with a lawyer. A student claiming mistreatment due to disability — such as disability accommodations withheld, implemented poorly, privacy violations, or being bullied due to accommodations, cannot file through OIE. They must file through the university-wide Student Disability Services (SDS), where they will not work with a lawyer.

I’ve heard on disability forums that this policy isn’t unusual. Other universities bar disabled students from filing civil rights claims through the school. I believe it’s a new policy at Hopkins and may be a new and disturbing trend in higher education.

In my experience working with SDS, I’ve never encountered anyone with any legal or healthcare experience. I’ve dealt with SDS three times; two of those times, they made the problem worse. The only way a disabled student can file a complaint with OIE is with the permission of SDS. In my opinion the people at SDS are incompetent. I’ve found them more concerned with managing disabled students’ expectations than with protecting disabled students’ rights.

SDS’s training material for faculty emphasizes universal design, meaning making everything accessible for everyone. It’s very touchy-feelie, and talks a great deal about how important it is that they’re now called Student Disability Services, instead of Disability Services, as if the semantic change somehow brought real change.

I’ve taught college and I can tell you, it’s impossible to go through the SDS faculty training material I’ve seen and come away with an understanding of a professor’s responsibilities in the classroom concerning the Americans with Disabilities Act, or a disabled student’s privacy under Federal Law. The training doesn’t explain what the laws are; it doesn’t explain what they say, and it doesn’t explain why, ethically, these laws are a good thing for disabled students in particular and for society in general.

Nothing in their training materials reflects the experiences I’ve had: constant accommodation failures, privacy violations, bullying, abuse, the times I’ve felt physically threatened. It doesn’t reflect stories I’ve heard from students at other institutions, some of which include sexual abuse and assault.

A good disabled student advocacy program would make sure every employee who has contact with disabled students knows their responsibilities under Federal law. It would punish those who broke these laws, up to an including docking their pay, suspending them from teaching, and termination. It would make sure that professors provided disability accommodations and, outside of the accommodations, treated disabled students like any other student in the class. It would survey all disabled students every semester to figure out bottlenecks and problem areas, then go fix these. That’s not what’s happening at Johns Hopkins. I’ve been taking classes there for four years; it wasn’t until this semester that anyone ever asked me about my experiences as a disabled student at the school.

If you’re disabled, don’t apply to the Johns Hopkins Whiting School of Engineering. And ask around on disability forums about other schools and departments that might be prejudiced and bigoted toward disabled students before you apply. If you’re already at the Whiting School, the best advice I can give is to avoid the older professors. If someone has taught at the school more than ten years, don’t take a class with them if you can help it. Whiting professors who also work at the Applied Physics Lab tend to obey laws concerning disability better than professors who don’t. (And professors who have their own companies or consulting firms tend to obey these laws the least.) I suspect it’s because academia is at least a decade behind most corporate white-collar workplaces when it comes to disability rights, and people who work at APL take these more enlightened practices into the classroom.

General advice for disabled students in college or grad school, based on my own experiences as a disabled student, as a college professor, and from listening to other disabled students and graduates:

1. Sign up for accommodations in a class the same day you sign up for the class. Be proactive and email your disability coordinator every other week, including after the semester has started.

2. If you or your parents have the money, budget to provide your own accommodations for when the school goofs up or a professor refuses. This may mean:

a. Occasionally paying for audio/video transcription. Wyzant and Chegg are good places to find an expert who’ll know the terminology. Generally it takes about two hours to transcribe an hour of audio. Many people on Wyzant and Chegg can get you a transcript either the same day, or overnight.

b. Occasionally paying for textbook scanning if you’re blind and use a speech reader. (I’m not blind, but I’ve heard horror stories from blind students.

c. Paying for a private proctor to accompany you on exams.

d. Paying a lawyer or paralegal to accompany you when you present your accommodations letter to a professor.

3. If you or your parents have the money, hire a disability lawyer on retainer. Have them occasionally communicate with the school on your behalf.

4. If the school gives you problems over accommodations, get your parents involved. Many administrators and professors don’t see disabled students as full humans capable of making informed choices and decisions. But they’ll see your parents this way. This may feel embarrassing; understand it’s a response to the school’s prejudice and bigotry, not a reflection of your ability to be an adult. Sometimes the most adult thing is to ask someone you trust for help.

5. Don’t ever discuss your disability or diagnoses with professors. Never. Legally, professors aren’t supposed to ask about your disabilities or medical conditions. If they press you, refer them to your student disability coordinator. But professors will discuss their own disabilities or health issues (or issues a family member or friend faces) as a way to get you to open up. Do not fall for this trap. They’re pressing your boundaries — and if you give in, they will almost always cross other boundaries, usually to the point of breaking the Americans with Disabilities Act (ADA) and other Federal laws, sometimes beyond into physical assault. Please believe me on this — I’ve never seen this situation end well.

a. A corollary is that you shouldn’t discuss medical conditions with your professor. Medical notes from doctors should contain dates and nothing else. If your professor won’t take a doctor’s note, or presses you for more information, immediately take the matter to an administrator.

6. If your school makes you give the accommodations letter to your professor, take a friend or witness when you do so, preferably an older adult. The point where you hand your accommodations letter to your professor is often the point where the professor starts to convince you not to ask for accommodations. Even though the request comes from the school, many professors will, at this point, try to pressure the student. Know that no matter how nice the professor seems when they do this, no matter how much they say they’re working in your interest, they’re actually being bigoted, vindictive cowards.

7. Forgive yourself. You’re probably going to face disability accommodation failures and bigoted treatment that affect your academic performance, your sense of well-being, even your mental health. Remember you’re a student; you cannot make professors and administrators obey the law or behave ethically if they don’t want to. Sixty years ago, it took Congress, the Senate, the President, leaders like Martin Luther King, and hundreds of thousands of protesters to convince schools to integrate and allow Black students into white schools, and Black students still have a hard time. Disability rights are Civil Rights, but they’ve never had a fraction of the support that Civil Rights concerning race, gender, or sexual orientation have had. Your job is to survive.

8. Don’t discuss problems alone with a professor. Sometimes professors turn threatening, even violent. I’ve heard horror stories about physical and sexual abuse and assault in these situations. Particularly if you have autism, blindness, or mobility issues, do not ever let yourself be alone with a professor, administrator, or tutor. See the recent stories about sexual abuse of blind students, if you don’t believe me. Tutoring in particular seems to be a place where disabled students experience danger and abuse. Bring a buddy, or at least have someone within shouting distance. (This seems to be more of a problem in community colleges and large State schools.)

9. Know that if you file a Federal complaint under the ADA, FERPA, or through the courts, your school will probably make your life so uncomfortable, you’ll have to leave. They may do this anyway if you complain too much, even if your complaints are valid. (The laws protecting you don’t have teeth, and colleges and universities know it.) I’m not telling you not to file — the disabled community needs wins. But if you file, it’s an act of self-sacrifice, and you’ll have to start over elsewhere.

10. Find other disabled students and graduates. Listen to and support each other.