The University of Notre Dame accepted James for this year’s freshman class. It was his first choice for an undergraduate education. No financial issues blocked him from going, no last-minute academic problems emerged during his final days of high school. But James is not attending Notre Dame; he is now a student at another top university. He was forced elsewhere because Notre Dame insisted that, to join the class, James (not his real name) had to increase his risk of dying.

James has epilepsy. When struck by convulsions, he falls unconscious for as much as three minutes, loses control of his bladder and bowels, and often vomits. Afterward, he remains disoriented for some time, unable to speak, with the right side of his body partially paralyzed. His condition is covered by the Americans with Disabilities Act, the 1990 anti-discrimination law that required Notre Dame — which did not know about James’s epilepsy when he was accepted — to accommodate needs presented by the seizures. A small modification was required to protect James’s life, but the school invoked an ADA loophole, proclaiming that the changes he sought imposed an “undue burden” on Notre Dame.

The burden? James couldn’t live with a roommate. This was not preference; it was necessity. “An absolute priority for [James] is a consistent, uninterrupted sleep schedule,” James’ neurologist wrote to the school. “While I understand that many schools wish to immerse their freshman in dorm life and pair them up with a roommate or roommates, this will only serve to increase James’s risk of seizure activity.” The doctor also laid out the stakes for James, saying a seizure could have “potentially deadly consequences.”

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In a letter to James, Ryan Willerton, an associate vice president at Notre Dame, accepted the concerns of James’s neurologist. But, Willerton said, the school would not budge: James had to ignore the threat to his health and possibility of death, or go elsewhere. Willerton wrote that living with a roommate fostered values sought by the university, including “a collective sense of care and concern for the common good and service to others.” To allow a student to avoid those goals out of health concerns, Willerton wrote, “would create an unreasonable burden on the University,” the magic words that allowed the school to claim the ADA did not apply. (I was privy to these documents because an epilepsy advocate asked me to review the case and contact James’ family.)

Neither Willerton, other Notre Dame officials involved in the decision, nor a school spokesperson returned my messages seeking comment back in August, or again last week.

James withdrew from Notre Dame. His second choice accommodated his needs. When he called that university’s office for disabled students and began to describe the issue, they immediately offered him a single room; he didn’t even need to ask.

Notre Dame’s demand — increase your risk of dying or leave — is the type of below-the-surface discrimination imposed by some universities and employers on people with epilepsy, a condition greeted in society with ignorance and fear. “For many people with epilepsy, the continuing social reality of their condition is as a stigma,” wrote Ann Jacoby, professor of public health and policy at the University of Liverpool, and Joan K. Austin, at the Indiana University School of Nursing.

Studies show as many as half of all people with epilepsy have confronted stigma based on their condition. In a national survey, many Americans said they were frightened to be alone with seizure-prone people, who they believe are unreliable, less likely to be successful at work, and should never marry.

The list of companies and schools that have engaged in discrimination against those with seizures is extensive. Public schools, colleges, nursing schools, law schools, and more have all settled cases involving discrimination against people with epilepsy in violation of the ADA. Companies large and small have been found to engage in similar behavior.

When subjected to discrimination, many people with epilepsy like James silently move on, trying to keep their pain and stigmatized health problems hidden, hoping the experience won’t be repeated at the next school or the next employer. I have met many of these secretly aggrieved people, and for good reason.

I am one of them.

I was thrown out of Swarthmore College in 1981, during my junior year. My grades were good, my daily life complete. Eight weeks before my eviction, my neurologist started me on a medication that provided much better control of my seizures. After two years of hiding in my room to avoid public embarrassment, I began walking the campus. More students became aware of my epilepsy when I had two convulsions in public.

On the night of my dismissal, a school official told me that I had to leave because Swarthmore “had an obligation to parents who paid for their children to have a normal education.” Weeks later, in a phone call I

Sophomore year Kurt Eichenwald
The author during his second semester of sophomore year of college. Courtesy Kurt Eichenwald

surreptitiously taped, a senior administrator stated bluntly that I had been kicked out because of my seizures.

It’s almost impossible to convey the emotional wreckage inflicted by institutional discrimination based on an uncontrolled health problem. The tormenters often argue — as they can’t with racial or religious discrimination — that their decision is beneficial, giving someone with a chronic illness time to seek a cure, even if it’s one that will never come.

The pain stemming from my college eviction — and from being driven out of a new job on my first day, hours after my employer learned of my epilepsy — has haunted my life. For decades, I have faced a constant fear that the life I have worked to build could disappear overnight because of cruelty or ignorance about epilepsy. And I fear for the impact on others like me.

Even though James landed at another school, Notre Dame’s blasé disregard of his circumstances, its willingness to force him out because of who he is, could cause him long-term pain.

After I was evicted from Swarthmore, Section 504 of the Rehabilitation Act of 1973 was of little help to me. The ADA, which was passed in 1990, hasn’t been much help for many of those faced with prejudice based on disability except in cases of overt discrimination. In my more recent conversations, the victims of discrimination were covered by the ADA. No one I know filed a lawsuit, all fearing that doing so would wreck their lives.

I understand why. After being tossed out of Swarthmore, I wanted to return — to be with my friends, to attend my classes, to be the person I chose to be. If I attended some other school, I would be a stranger to my classmates, and I knew I likely would experience a seizure within a few weeks of starting classes. At that point, I would immediately become “the epileptic” at the new school, instead of being “Kurt with epilepsy” to my peers at Swarthmore.

I consulted officials at the Department of Health and Human Services, who were charged with enforcing the anti-discrimination law, as well as a civil rights attorney. All gave the same advice: I should not return to Swarthmore. Even though they could technically force the school to take me back, they said I would almost certainly have a target on my back. By allowing me to return, the school would be admitting that I always had been qualified for the educational program. Officials might fear I could sue them at any time, with the readmission being evidence of discriminatory intent in the original dismissal.

All it would take for the school to dodge liability, one government investigator told me, was to flunk me. He told me of an instance where, after the government forced a school to allow a student with a disability to return, an administrator pressured professors to fail the student to ensure any litigation would be tossed out of court.

I decided to fight anyway, vowing not to file for a federal inquiry unless my efforts failed. After much effort and more than a few threats of legal action, I was readmitted, although administrators soon wrote a letter to my parents cautioning that I might be thrown out again because of my health.

I worked hard to catch up on my missing credits and graduated with my class. In 2005, the then-president of Swarthmore sent me a letter of formal apology for what the school had done to me 24 years before. Soon after, I was invited to give a speech at the college, for which I was paid the exact amount my family lost in tuition during the semester I had been sent away. And this year I was awarded an alumni lifetime achievement award by the school.

Swarthmore has done right by me, and now exhibits exemplary treatment of people with disabilities. Other institutions need to follow that example.

Notre Dame: You know who James is. Apologize to him, in writing, just like Swarthmore did to me. Do not let your ignorance or intentional discrimination damage his life. I have no doubt, given all the challenges he has surpassed, he is destined for great things. You do not want your mistreatment of the disabled to be at the center of the stories he tells about Notre Dame for decades to come.

Kurt Eichenwald is an American journalist and author of five books, most recently “A Mind Unraveled,” a memoir about living with intractable epilepsy (Ballantine Books, October 2018).

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  • Hello Kurt,
    Good for you!! I commend you on your persistence and insistence. My daughter had uncontrollable seizures staring at age 4. She was tried on many medications which had horrendous side effects. Fortunately,I had a great pediatric neurologist at Children’s Medical Center in Hartford CT that was very helpful. Her kindergarten teacher and special ed teacher were also great. But as she progressed though grammar school, they wanted to ‘dumb down’ her lessons so that she could succeed. I said no. If I allowed this she would have become further and further behind with each grade level. One example of this was her multiplication tables. They wanted to let her use a written table during her work. I said no. She is capable of memorizing them. So I kept reviewing them with her. I played a game with her. I would say a problem and bounce a ball to her. Before she caught the ball she had to give me the answer. She did great and had soon memorized them. She also learned to read three times, as the medication changes made her loose ground in learning to read. I spent many hours helping her to relearn the vowel consonant sounds to be applied when reading. I was very insistent with the IEP and attended all meetings.

    She graduated three yrs ago manga cum laude with double major in biology and chemistry. She is currently applying for physician assistant school. She is a staunch patient advocate and becomes very upset at discrimination. When she was in college, she spoke up for many students who she felt were not being given a chance or were being discriminated against. It is great to see that most colleges make accommodations for epilepsy people with epilepsy. Others that don’t need to be taken to task and to court if necessary.

  • Wow. The intense and proud ignorance in this comment thread by some are shocking. I’m glad Kurt you addressed one of them. I have this condition myself that’s mild and greatly controlled by a medication 9 times out of 10, but I have had a convulsion before diagnosis and I that was an incredibly powerful, horrible experience that no one ever wants to ever have again.

    Even in this short comment section the national survey really reflected correctly how ignorant people feel about others with certian medical conditions or disabilities.

    A free pass? This guy is just asking for a separate room, how does that go against the University’s “culture”? Having a roommate is just one of the experiences of college, not the whole and only experience.

    Incredibly disappointed in ND but I can see how this institution and other places are able to pull this off by just looking at this comment section, trying to make obvious BS and outdated (or just wrong) views “logical”. A lot of y’all actually sound scared and angry without knowing exactly why.

  • Glad to see Ryan Willerton is finally having some folks vocalize their disgust with his inability to “do the right thing” when handling any sort of sensitive student matter. They’ve since moved him out of the life-ruining department and he’s now “VP of Career and Development” for the University.

    Why is this man representing us at all? The University had hired him to run “The Office of COMMUNITY Standards” at one point….I’m sure the actual ND Community is disgusted by this man’s actions….and probably don’t even know the trove of confidential cases this man played Judge and Jury over.

    Of course, the University puts the “You can’t sue us” clause in DuLac….to protect men like Willerton. Absolutely appalling and unethical.

  • Thanks for writing this great article. It shows me that not many things have changed since the ADA in different parts of the USA. I have written you a more personal email to “first.opinion@statnews.com” . I have epilepsy, and I work with NCHPAD, the National Center on Health Physical Activity and Disability as a filmmaker. And if given the chance, I would like to share your story, as well as James in a more visual format. I have already made two films about epilepsy. 5 years ago now… but none of them touch the subject of discrimination and the ADA. The two film are “Seizing the Unrecorded” and “ePILLepsy” if you want to see what kind of filmmaker I am. Thanks again for writing this. I will share it with my boss at NCHPAD. I am one of 2 people that work at the Lakeshore Foundation/NCHPAD with epilepsy. There are many people there that have physical disabilities, but epilepsy is not a topic that gets brought up often times simply because it is an “invisible disability” if it is controlled. It is only recently (3 months ago) that I started to control it more with 2 new medicine that I do not trust exactly, 1 to 2 seizures a week, instead of 1 to 20 seizures a day. Thanks again for sharing this story.

  • I am a recent graduate from the University of Notre Dame. I have Cystic Fibrosis and required a single dorm room for a variety of health related reasons. The University granted it to me with no questions asked. They even reduced the price of the single to that of a standard double. They saw it as unfair that I would need to pay more due to my condition. I’m not doubting anything in James’ case, but I am curious why my story is so different.
    Reflecting back on dorm life, it is difficult to say if I would have rathered a room for 2+ people had my condition not forced me into a single.

    • I can say I got nothing out of sharing a dorm room other than seeing how entitled some people are to have their college paid for, and waste it by not going to classes, staying up all night partying, and disturbing the sleep of their roommate. The pair of girls next door to us were even worse, I can’t being to say how many nights of sleep I lost from the noise. I’m baffled at the thought that sharing a dorm is necessary to the college experience. I couldn’t wait to get through my freshmen year and move off-campus. That was not at ND, but at a large state college, but I am sure no matter where people go, there are good roommates and REALLY bad ones and it’s really just a crapshoot who you end up with.

  • Thank you for writing this. People living with autism, and other conditions, also are prone to seizures. I find it hard to believe that big universities can’t accommodate this common health issue.

  • Discrimination and “reasonable accomodation” are 2 different things. Everyones’ emotions are running so high and are so “offended”, you refuse to see the big picture. The schools’ ethos has a different focus. James found a home that has a different focus that he’ll have a chance to fit into. The school didn’t deny him on discrimination, it was “reasonable accomodation”. Places don’t have to grant every accommodation.
    I’ve seen some blatant discrimination in my time. I’ve also seen reasonable accommodations be granted. I can think of three universities in the area that would not be able to accommodate him (2 of which do not have single room dorms). It would not be “reasonable” for him to say ADA you have to build or reconstruct dorms just for him. There are certain areas of one of those universities that are off limits to wheelchair bound people. I’ve seen some places refuse to allow handicapped people in a facility because it would “interrupt the flow of things”. I’ve seen a lot.
    This is not discrimination but a refusal due to “reasonable accommodation”. Try asking a true ADA lawyer. Even the EEOC doesn’t win all its calls or take all the cases submitted.

    I’m truly happy the guy found a place that would make him happy.

    Question: if James finds another person who he is interested in in a romantic way, and they wish to not date him due to his epilepsy, are you going to file suit against them?

    • As a physician, I am often asked by patients and parents of patients to write letters to schools explaining that, for medical reasons, the patient’s request (or demand) should be accommodated. Some of these requests are reasonable, some of them are not. But, I write them all because I work for the patient, not the school. “Tell me what to write and I will write it” I tell the patient or parent. You want a handicapped parking pass for your hangnail? Of course, Ma’am. Want to live by yourself so you don’t have to negotiate with or accommodate another person? Tell me how desperate to make it seem, and please remember this when you rate me on Vitals or Healthgrades. How sure are we that this is truly a life and death matter? Can other humans live within 50 feet of the patient, or is that going too far? What is the evidence of veracity? There is a balance to achieve and while I may write a letter, I am hoping that someone along the way will balance the competing interests for society and patient.

    • You cannot be serious. They don’t have to build anything to accommodate him. Just give him a double to himself. Essentially EVERY university can accommodate this, as there’s basically no chance in hell there’s insufficient total space to accommodate this. Even if that were the case, then THAT would be the reason cited, not some nonsense about how having a roommate is an essential experience at the school.

      Give the man a double. If you think that is just too luxurious, I’d say being at constant risk of going unconscious while vomiting, etc., is more than sufficient compensation.

      Some people, I swear….

    • @I don’t… that is some serious abdication of your responsibility to society to provide things like handicap placards to patients that don’t need them just because you are worried about your ratings online. I guess you are type that also would give someone a letter to have an emotional support animal in their apartment if they said they needed one, even if you knew they did not. I know my doctor sure as heck wouldn’t do that (when I did need a handicap placard for medical reasons, he specifically gave me the approval for only 6 months so that we could re-assesss if I still needed it at that time). The whole point of even getting a letter from a doctor is that we make the assumption that the doctor is making the decision NOT the patient as to whether the accommodation is needed. Are you questioning that this kid that has epilepsy DOES have a need to room alone? I can’t imagine anyone with epilepsy having to live through the kind of roommate I had freshman year.

    • @Mary Jo–Your comments make two important points for me. #1: society can’t have it both ways–either doctors do the right thing based on their own judgment OR we have a consumer-driven healthcare system where “the customer is always right”. Right now, the pendulum says the customer is right, so doctors will write just about anything a patient requests or risk punitive action at their institution. #2: Given that we are in a customer-driven system where patients ask and receive, my original point was that a doctor’s note is a very low level of evidence that something is needed. In this case, the author presents only the evidence of a doctor’s letter to the institution as basis for the student needing a single room. If that is the only evidence of need, then the case is extremely weak, which may be the reason that Notre Dame did not accomodate the “need”.

  • Dear Kurt,
    Thank you so much for sharing your experience and shining a light on Notre Dame’s treatment of James. Your bravery and temerity to fight to return to Swarthmore are commendable and clearly paved the way for others. It is good to know Swarthmore ultimately made things right, but I empathize with the pain and anguish you had to endure along the way.

    As a parent of a 9th grader with epilepsy, I cannot help but worry about how she will do four years down the road when we send her off to college. Fortunately our daughter’s seizures have been well-controlled thus far with medication, but we also know through testing and real-life experience that sleep deprivation is a huge trigger for her. Thanks to your article we are now aware that we will have to take a hard look at how each school handles epileptic students when the time comes for my daughter to decide where she will pursue higher education.

    In 2018 society demands we share bathrooms with members of the opposite sex because they “identify” one way or another, yet Norte Dame refuses to accommodate the simple request for a single dorm room by a student with a serious medical condition. Sad.

    • Totally agree with Rebecca… as someone who has a friend that is a trans woman (who all my friends welcomed openly into our “women’s only” group) it’s very sad that knowing about how people will discriminate against someone you love is not enough to make you think twice about doing the same to another group.

  • Wow, I am shocked and very disappointed by this failure done by prestigious universities. Thanks for sharing your and James’ story.

  • Whether disabled or abled, if a schools’ culture doesn’t fit mine, how much stress is that going to be to fit in? It is better to know that people can’t deal with a situation because if they can’t, I would want to be around people that could. You can get harmed a lot more easy otherwise. I wouldn’t want someone who had seen someone else give CPR, attempt to give me CPR, instead of someone certified in it.
    Living in a college dorm is stressful. Just because you have a single room doesn’t guarentee you are going to get an interrupted nights’ sleep. Yes, in this case, telling others who live in that dorm area, or floor, the floors above and below, outside the windows, that they can’t have parties’ all night infringes on them. Is that unreasonable? Yes. I would bet that he possibly finds that in his new dorm.
    Nursing school: what happens if you are in the middle of an IV or CPR and you have a seizure? What if you are holding a baby to take blood? If you are in the middle of a court appearance and something happens, what is the person supposed to do? They’re going to expect you to be present.
    I think the ADA has a lot of great things. You still have to take a look at the overall picture. Yes, a health problem does need to be controlled – otherwise you are saying it is ok if someone has the measles, diptheria (uncontrolled health problem) and they shouldn’t be “discriminated” against by taking them away from society into isolation.

    I am glad he found a spot that could accomodate him. However, if an schools’ ethos, a careers’ ethos, is not one that is compatible, that’s no different than the choices most others have to make.

    • What you describe could happen to anyone who doesn’t have epilepsy. Non-epileptics can have heart attacks, strokes or other medical issues that could be as dangerous to themselves or others. In other words, you are demonstrating the prejudice that this article tries to describe.

    • What are the odds of that occuring? You have someone here who has enough of a problem that it is an ADA type issue to require an accommodation. Everyone does not have that problem that they have to have accommodation for strokes, heart attacks. You’re comparing apples to oranges.
      The ADA is not a pass for everything you want in life. Non handicapped people don’t get everything they want in life. The word reasonable is there for good reason. People would be saying they were handicapped and couldn’t work in an office but from home 24/7. That’s not doable for a lot of jobs, realistically.
      Repeat: the ADA is not a pass for everything you want in life. I’m glad the person found a college “home”. Lots of people switch colleges until they find one that suits them and it may not be their first choice. Life is like that.

    • It isn’t a free pass. My son has epilepsy and his school granted all accommodations for him. Believe me, we never thought we would be asking for accommodations, but we had to and it was difficult on him and all of us. Sleep derivation can trigger seizures, so he has a room to help get consistent sleep. We will do anything for our child to not go through that again. No a free pass.

    • This is easily the most ignorant response to anything I have ever written. It is infuriating because I know people who readily engage in discrimination argue this kind of nonsense at the drop of a hat. So, I am not addressing the willfully uninformed writer of this comment, but everyone else whose arrogance does not overwhelm their humanity.

      People with disabilities, like James, do not want special treatment. He was accepted to Notre Dame, he wanted to go to Notre Dame, but was told “risk death or leave.” By this commenters standards, a school could say on learning someone was black “Sunburn easily or leave.” When you create a pointless requirement that cannot be met, you are using BS rules to discriminate.

      Now, yes, there are some jobs that people with epilepsy cannot do. And Vic says “Since that is true, they shouldnt be allowed in programs that accept them and that they want to attend.” The standard here – well, requiring a school to make a harmless accommodation that they don’t want to do is simply too much – is essentially giving the green light to all forms of discrimination.

      No, Vic – people with disabilities do not have to be forced out of programs that accept them simply because of that disability. By your argument, if i put a gun to your head and tell you to give me your wallet, you have given it to me willingly.

      The ADA is not meant to solve all problems. But it IS meant to address discrimination. Which saying “risk death or leave because we have a preference” unquestionably is.

    • Right on, Mr. Eichenwald. It’s amazing this commenter can’t tell between a real complaint vs. a school pushing BS reasoning just to avoid an epileptic at all costs. Anyone that has lived in a dorm knows there’s nothing “sacred” about living with a roommate. It’s an experience, but to say forgoing it for serious health reasons is a serious burden on anyone or anything is patently insane.

    • @Yuri – that’s for darn sure. The only thing I got out of the whole roommate experience was to learn to vet any future roommates VERY carefully. Oh, and that some people will completely waste the gift of having parents that will pay to send you to college.

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