Thread by @kurteichenwald

1. This is 65th day tweeting about @NotreDame driving out a kid with epilepsy. I will not stop until they apologize.

The time has come to explain, why am I doing this? The kid & his family don't want to sue or return 2 ND. So is this about him or more?...statnews.com/2018/10/25/epi…

2...the answer is, it's both. It's about this single case of "James," whose life could be severely damaged by this. But it is also about calling attention to the reality for folks with #epilepsy. This happens...All. The. Time. Out of ignorance, people are scared of folks with....

3...epilepsy. Seizures frighten them - they are scared of seeing the lack of control, they are scared of the liability, they are scared. We are driven from elementary school, high school, college, graduate school. We are fired from our jobs. One seizure is all it takes and the...

4...excuses and rationalizations start piling up. James has just experienced his first one, scratching his head as @notredame put out "standards" that proclaimed people with his type of seizures could not attend the school without risking death. I also was thrown out of college..

5...on the day it happened, I was told by a school official who had recently witnessed a seizure, "We have an obligation to those parents who paid for their children to have a normal education." I was fired on my first day of work, just hours after an insurance question forced...

6...me to reveal my epilepsy. And don't assume the kind of person who did it - i was forced out of Ralph Nader's primary advocacy group. And it goes on and on and on. "James" will not sue @notredame because, as his mother told me, "He has to have a job someday." Suing will...

7...require publicly disclosing he has seizures, and that can mean the difference between being employed and not. (From here on, so you get a sense of what this is like, I'm going to attach comments from people with epilepsy who post on comment boards about work).....

8...so places like @notredame can drive us out, and do it over and over and over, and we slink away in silence, taking the abuse because we know making noise can destroy our lives. If people learn of our epilepsy before we are hired, we often are not hired....

9...people with CONTROLLED epilepsy have 3 times the national unemployment rate. We walk in fear every day that a seizure will occur in the wrong place, with our schools or our employers seeing them, and suddenly we are out.

So why am I doing this? Because This. Must. Stop....

10...people outside the epilepsy community cannot imagine this happens. Why, there are laws, the ADA! As someone who was thrown out illegally, I can tell you, the government warns you that if you file, your life can be destroyed. And so, I am making a point with @notredame.....

11...@notredame is the one I chose because their violation of the ADA was so grotesque. But there were many other institutions I could have selected. I am making a point with Notre Dame. Yes, schools can throw us out knowing we can't sue if we want a life, but there MUST be a...

12...price paid. Imagine if I told you that people with controlled diabetes or HIV had 3x the unemployment rate. You would be outraged. You would stomp and scream.

We hide. We are in the shadows. We rage to each other. And if we do talk about it, no one believes how bad it is..

13...@NotreDame insisted on a rule that meant NO ONE with James's type of seizures can attend the school. It violated the law. And, like with most cases, nothing would have been heard about it. Notre Dame is now the poster-boy for discrimination against those with poorly....

14...controlled epilepsy. More than half of the people in this country say they would not want to work with someone with epilepsy. Having seizures is hard enough, being treated like an untouchable makes it all the worse. We form one-person businesses to overcome firings...

15...but for those who cannot do it, there are no options. We are told to file for disability, even though we can work. Social Security rejects those applications, saying we can work. And then we get fired again. So, "james" could not fight without putting his future at risk...

16...so Im fighting for him. People with epilepsy are not second class citizens. We do not deserve to be driven out of schools and out of jobs. I met one parent recently whose daughter lost every friend after she had a seizure at school. She dropped out cause of her loneliness...

17...I met a young man, a popular athlete who had a seizure on the baseball field in middle school. "I was never invited to another birthday party," he said. At one of my book events, a mom of a kid with epilepsy got a call while I was there from the kid's best friend's mother...

18...the mother of the best friend said that the daughter with epilepsy was no longer welcome in their home. The best friend mother said it made her too nervous to have the girl there because of her fear she might have a seizure.

My being thrown out of school was devastating....

19...to me for much of my life. I lived every moment afraid that the life I built could be snatched away from me at any minute. I will not let that happen to James. Notre Dame will apologize, or this will go on forever.

A major epilepsy organization is offering to travel to...

20...ND, to explain what they did wrong, to make sure this never happens to another kid with epilepsy. That is all James and his family want - to protect the next kid who might be driven out because of ignorance or discrimination. But ND has yet to accept.

James will not....

21..live his life thinking hes alone, with no way to fight back. I'll continue this war on @notredame, either so they can serve as an example of how to fix things, or to communicate to every institution -if drive out people w/ epilepsy, I could show up at your door with war.
Done