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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  • Shameful. Notre Dame administration apparently will never need an accommodation for themselves…. all must be healthy. Lucky them….James is better off without such an uncaring, selfish institution.

  • My son had suffered from myoclonic seizure for over a year, uncontrollably with meds. When he has one it starts where he rolls his eyes back or his eyes are staring off to nowhere, seeing he arms jerk every single night His breathing gets very shallow and his heart rate speeds up, now his not sleeping. I don’t think there’s any changing he started experiencing one horrible serious side effect of the medicine. I could not get an appointment with a neurologist for 5 weeks. I was filled with worry. Thank God for a wonderful doctor, i read a testimonial of someone on a website her daughter was cure from seizure using herbal medicine. I called the number that was retain at the website, i explain to doctor Lawson about my son symptom and I ordered his medicine. my son used the medicine for month now, his health has change the meds worked without any trace of side effects. For over 1 year now seizure free if you don’t have this herbal product it is available. It works, wonderfully.

  • Notre Dame needs to do the right thing. Accommodations should be made. Using the roommate excuse is ridiculous, as a single room is simply a necessity for this condition. Reasoning, common sense & compassion should not be thrown out when deciding these matters. Just because your “policy” is to have roommates, doesn’t mean it works for everyone with special needs. If you are steadfast & make no apology or accommodations/support to those with epilepsy, then I hope your alumni will consider no longer supporting you! Shame on all that made this horrific decision.

  • I was diagnosed with epilepsy in 1991 after a closed head injury that same year. Because of my accident, I started college in 1994, about seven years later than most students. Choosing to go to college was scary enough when I couldn’t speak or walk very well from the brain damage but was made worse by epilepsy. Because my seizures were still a bit of a mystery, my neurologist would not allow me to receive the MMR (measles, mumps and rubella) shot that was required by the university at the time. The nurse kept me in the office for around four hours, grilling me about this, repeatedly telling me that she had never heard such a thing. I kept telling her that it was my neurologist who made the decision and to call him and talk to him. It was humiliating and I came very close to giving up on attending college. Any college. It had taken all of my strength to get where I was. It was my first real experience with epilepsy stigma in college but it wouldn’t be the last. It was a shame it was from. a member of the medical profession.

  • Not being American, the whole concept of compelling grown adults to share a room seems bizarre.
    Don’t see how it fosters good values at all. It would have been an easy accomadation to make.

    • Maybe I can? Soft skills like communication, negotiation, etc. are not there. When people can’t even learn to share a living space, they might have a hard time out in the real world. Certainly in terms of personal interrelationships, I find certain cultures that do have you work more on family relationships/other relationships/building tend to be more successful at this than Americans. Americans aren’t required to do a lot of “personal”. I think what the schools are trying to accomplish is building a sense of community with others.

      This is actually not unusual. I knew schools since back in the late ’80’s/early ’90’s that did this. Only seniors were allowed a single room, which was more like 8×8. LOL. These are also places that didn’t have dorm space, so it was at a premium.

      HTH

  • To whom it may concern,
    I am writing this comment in hopes of reaching Mr. Kurt Eichenwald,

    I am currently a sophomore at the University of Notre Dame, and I have a fairly severe mobility impairment (Cerebral Palsy). I have received accommodations from the University and my experience with them could not have been more different than those articulated in the article. Now, I am not trying to deny that this happened. I am simply very curious. Especially because I have recently founded a club hoping to promote awareness for students with disabilities on campus so that they might have a better experience.

    I was wondering if there was any way you could inquire about whether or not the boy mentioned in the article would be open to talking with me about his experience? I just want to have a better understanding of what went on so that I could try to improve things for future students. I believe that some injustice was done to this boy, and I would like to help.

    Sincerely,

    Monica E. Mesecar

  • I am not surprised that the institution of higher learning, Norte Dame, is too ignorant to apologize for their past actions of discrimination against a student. I had a similar experience about 25 years ago when I tried to enroll my 7 year old daughter in the local Catholic school. The priest who headed up the administration told me flat out that they did not accept children with disabilities and that I should enroll her in public school. He claimed that the school lacked the expertise and resources for a child “like her”.
    Folks with disabilities, whether developmental, physical, organic or other, are the last in line when it comes to civil rights. I found over the years that the stigma of “being different” due to a disability is still very strong, even among those who one would think they would be “charitable” and “enlightened”.
    Notre Dame owes James and all the other students they discriminated against over the years. Making amends can help, even 30 or 40 years later.

  • I disagree that Mr. Eichenwald is hateful in his Twitter feed. He is measured in his opinions and delivers them with equally measured prose and supports his opinions with examples. These opinions sometimes provoke irrational hateful replies. These replies very often do not reflect an opinion about the original writing from Mr. Eichenwald, but instead are ad hominem attacks. I certainly do not believe he hates Catholicism or any other loving religion.

  • The fact is the author hates Catholicism and has it out for Notre Dame. Just read his twitter and you can get a genuine feel for the spite pouring out from him… regardless of all the good as Notre Dame does in the world pathetic little men like Kurt are always gonna be there any time a random employee falters. In Catholicism you forgive, educate, and learn… In Kurt’s world, you push your pathetic agenda of hate and division via Twitter:

    Kurt Eichenwald

    Verified account

    @kurteichenwald
    1h1 hour ago
    “A note to people applying to @NotreDame: if you have a disability that might scare them, go somewhere else. I will never let anyone forget their discrimination.

    • All Notre Dame has to do is apologize, the first step towards repentance in its discrimination against the disabled.

      Im sorry you seem to believe that demanding kind treatment for people with disabilities is “anti-Christian.” You seem to practice a vastly different brand of Christianity than I do.

    • I was raised Catholic and I concur with Mr. Eichenwald. This is disgraceful and Norte Dame needs to apologize and do much better in offering accommodations to people with disabilities. My seventeen year old son has epilepsy and has faced public school discrimination and lack of supports since he was in kindergarten. I do not understand why it is so hard for institutions and individuals to educate themselves on epilepsy. More people have epilepsy than autism!

    • @Marcia- I feel like your comment suggests you think Autistic people are more accepted than people with epilepsy. Many of us have epilepsy as well as autism (not me, but it’s common) and many of the groups that claim to advocate for us (such as the one that says it’s “time to listen”) actively ignore and work against the goals of the Autistic community. We’re all in this together, let’s not pit disabilities against each other in some sort of “acceptance fight”.

    • I don’t think he has it out for Notre Dame, Could you imagine what it would be like to ask 3 kids in the dormitory room to make sacrifice to help with sleep? Those kids might decide a little differently then the school and a single room is reasonable. I have seen group rites in the dorm where the one who is a little different gets assaulted, just for fun, by the kids on the floor all because of the difference. My resident assistant in the dorm called this rite of stooge, where kids get away with group assault, all because it’s fun and they can. One cannot ask for accommodation from young college kids. He should have enough authority to get his own room rather than seek accommodation from adolescents who will act to protect their newly perceived dormitory rites.

    • Thank you for your courage and unwillingness to give up without a fight. I had a cousin who had epilepsy. She lived into her 20’s. Unfortunately, she had a grand mal seizure while in the bath.
      I read you all the time. I wish you well. Thanks again for the great story. I am really ashamed of ND. The Catholics have a problem asking forgiveness. (Former Catholic)

    • @Torako – I didn’t read Marcia’s comment to mean Autism is better accepted, she was just making a point about how much more common epilepsy is than most people think. Most people if asked would be very surprised to know that there are more people with epilepsy than autism, likely thinking it is a rare condition to have.

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