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Comment by lisper | Hacker News Reader

About 15 years ago I made a documentary film about homeless people (https://graceofgodmovie.com). Two of my subjects had the same medical condition, a seizure disorder resulting from a head injury, which made it effectively impossible for them to work. (To quote one of my subjects, "It's not that I'm incapable of working, the problem is that I'm not reliable. Most people don't want an employee who might lapse into a seizure on the job...")

Both applied for SSD. One was approved, the other denied, and so one ended up on the street and the other didn't. The judge who denied the first subject didn't give a reason, which became the basis for an appeal that went all the way to a federal circuit court. The appeal was denied.

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The reliability is a huge factor. That's why my sister (bipolar disorder) and I (MS) have some employment issues. She can work consistently, but bipolar meds stop working sometimes and don't fully level her out. I can work, but my health fluctuates based on things like the weather and my stress level. Luckily I'm educated enough and my skill sets are rare enough put together that I can demand some concessions but my sister doesn't have that since bipolar also prevented her from finishing her degree.

What was the court's reasoning for denying the appeal? This sounds terrible, unfair, and unjust.

> What was the court's reasoning for denying the appeal?

I don't know. The layer wouldn't talk to me (because client confidentiality, despite the fact that my subject was wiling to sign a release). I learned about the appeal results through my subject, who was not an entirely reliable source. It was emotionally wrenching for me just to watch him talk about it. I can't even imagine what it must have been like for him.

It's possible that there are public court records if you really want to know. If you know how to look these things up contact me off line and I'll give you the info you would need to locate the records.

> This sounds terrible, unfair, and unjust.

Yes. That was kind of the point.

However, there is more to the story. If you want to know you'll have to watch the film :-) You can find it on iTunes and Amazon. But I'll tell you this: the subject was a psychologist with a masters degree.

Thanks for your work in creating the documentary. My mother went through a very similar situation to your subject who was denied, and died shortly after her final denial.

People don’t understand just how arbitrary the outcomes are of the system.

I am trying to think of a job where someone with seizures could work safely and can't think of a good one...

...software engineer?

Nearly any other white collar, sit in front of a desk, job?

Was this supposed to be sarcasm?

Because essentially any regular "office job" or "desk job" would work.

How do you get to that job?

Public transit or taxi/ride share? Lots of people with medical conditions where you can't drive work just fine. Also if you live in a city you can probably walk to work.

Also even with seizures you can drive if you're on medication and haven't had one in a while.

How do those people get to the store or to the doctor?

Someone else goes to the store for them. Or they get driven to a dr appt. Sometimes 'disabled' really is more debilitating than people expect.

Sure. But a lot of times it’s not. As a counter point, I have a relative with cerebral palsy that has a shockingly normal life for as disabled as she seems to me. In a lot of ways it’s terrifying to see her getting around but she lives a very full life. People, in spite of disabilities, need not just be warehouses until they die.

Not at all, genuinely curious at what would be a safe job. Not something I have ever had to think about, not saying that people who have seizures can't work.

Office is the safest I guess but still has risks. For example, if someone is in the office in a cubicle and has a seizure they could hit the desk corner or go unnoticed for a while depending on how many people are in the office that day.

Any white collar remote job is fine. No risk to the business.

Think of it instead as “risks beyond staying at home”. Falling and hitting your head could happen to anyone, and I’d wager it happening at work is far safer as you are more likely to be quickly found.

Years ago my uncle got a seizure while sleeping, fell out of bed, and ended hospitalized for weeks with a skull fracture. With these kind of conditions more or less anything in "unsafe" to a degree.

Exactly - and I’ve read enough stories of this sort of thing happening to people living alone, and no one notices until things start to smell - whereas even in a practically empty office worst case you’d be found (hopefully still breathing) by janitorial or security when they make their nightly sweep.

Way more likely to happen in your sleep, ime

My fifth grade teacher had a condition that caused her to have seizures.

I remember it being very foreign and new to me. I had no first-hand experience with seizures before. But she just calmly explained what seizures were, what would happen, and what we should do. She designated a few students to call the nurse if she had a seizure and the nurse cared for her after that.

She did have a seizure a few times during the school year, but it didn't affect her ability to effectively teach us. She was one of the best teachers and one of the most positive people I have ever met.

She was a fantastic teacher and friend. Rest in peace, Ms. Osinski.

Thank you! It's not something I have really had an opportunity to think about. I've worked with people who have had other kinds of disabilities both physical and mental, the world they have to navigate and challenges they have are, for lack of a better work, astounding.

I remember back in school we took turns using a wheel chair for a day to get a vague sense of what it would be like. How you would have to plan your route around the school, getting through doors. Just the difference in perspective in the hallway. For something like seizures, that is harder to think about so I appreciate your reply as opposed to the derision.

What do you think people with seizures do with their free time - hang out in a padded room all day?

There's plenty of office jobs where the risk of having a seizure at work are no different than the risks of having a seizure surfing on your own time. Hell, you could stock retail shelves at night with no more risk than when you go shopping on your own - so long as you aren't operating a forklift.

My friend CW had grand mal seizures (major epileptic 'fits' for which he had a 'brain pacemaker' fitted which was a little successful). Sadly he died after a seizure when he was home alone, about 15 years ago.

He was quite capable, we were assistant cub scout leaders (UK) together and whilst he couldn't be solely in charge of the kids he could lead activities and games. He also took part in climbing, hikes, watersports, etc. The principle cub leader (Akela) was determined to help him take a full part as a leader and in activities; both great people. Outside scouting my friend did fundraising for epilepsy charities, playing with a rock band, and helped kids to come to terms with their epilepsy too.

CW had applied for jobs but couldn't get anyone to keep him on; he spent a lot of time playing video games. In some ways it was easy for him not to work, but he would get frustrated that he felt he wasn't contributing; that he was reliant on his parents.

He couldn't work, as others have said, because he might have a fit basically any moment and leave a puddle of blood and require emergency care. Employers weren't keen to take that responsibility on. To be fair, it was quite scary, he did have some warning that he was likely to have a fit (eg when tired) but not exactly when. He'd be walking along and simply fall face first on the floor -- he had a lot of scars on his face and forehead, but refused wearing a helmet.

He had been hoping to get an assistance dog; they can tell when their owner is going to have a seizure; the owner then can get themselves to a safer place, call someone to check on them, et cetera.

My friend wasn't the sharpest tool in the box, but was not stupid. Jobs that suited would probably be low level administration type jobs. But, he would have managed manual labour if he was paired with someone sensitive to his condition, especially if he had an assistance dog (no heavy machinery though!).

Aside: I don't see why your comment deserves downvotes. Recognising one's ignorance on a topic is the first step towards wisdom.

I appreciate you sharing, I am sorry to hear about your friend. My guess on the downvotes are they interpreted my question as saying that I didn't see a place for people with seizures in the workforce. I guess I could have tried to phrase it better...

Part of the reason I asked what I did is because I feel that work and having work is important to people. It's one of the things I think about as we introduce more and more automation.

Some people are good with physical things, some with more mental and other things as well(caring, making something, etc.). Not having jobs that are able to satisfy leads to a large amount of our public strife.

I think about one of my uncles, he self described himself as a hellion when he was younger and credited either the Navy or the Merchant Marines(I think he was in both) as straightening him out. My understanding now is that you have to have a clean record to join, they are more professional organizations.

I have a friend who works with Doctors without Boarders. He goes into areas and sets up camps. He has a very strained relationship with his wife and kids because he is always going off someplace. He tried to stay, both working for others and then owning his own business but when I talked to him, he was not happy. He could not stand to be in the same place doing the same thing, he needed the newness and challenge.

I think about this when ever we talk about offshoring or industries going away and how people should just change jobs. It is a difficult problem.

That all dovetails well with my thoughts about the more [AI] automated future. Thanks for sharing.

You're getting a lot of pushback, and it is genuine for good reason, but to add some anecdata - my seizure/migraine complex is triggered by scrolling on screens, videos, sometimes opening a new tab or window. The office jobs aren't a guarantee for us sadly.

I know someone who had a seizure disorder and worked as a registered nurse. There's plenty of opportunities

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