Working with Epilepsy

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Comment by S T on May 19, 2012 at 8:14pm

My Story: I worked for a large retail store for fifteen years as a dept. manager until March 2012.  My seizures were under control for most of the time I was there.  The last four or five years they came back.  They started to increase when my supervisors decided that I needed to go.  I was a liability.  I had several seizures at work and missed some work.  Now I know what they were doing was illegal, but like I said they are LARGE and know what they are doing.  To protect my job I went on disability a few times and eventually had brain surgery (Sept 2012)  Finally the process ended on March 9, I was terminated, for poor performance.  Now you would think if I wasn't doing my job they would have realized it 14 years ago.  I am ok with not working there any longer because it was causing me a lot of stress and who wants to be somewhere where they don't want to be.

While looking for another job I do not tell my future employers I have Epilepsy.  They have asked why I am not working at -----, I tell them my job has been unlimited, with a whole story attached. 

While I am not ashamed I have epilepsy, I have seen the reaction of strangers, it either goes from pity or horror.  I explain briefly that not all Epileptics are like the one they portray in TV or movies.  We don't all fall down and start convulsing.   I mostly look spaced out and don't react when spoken to.

Well, for the GOOD NEWS-----I HAVE A NEW JOB!!!!!!!!  I AM THE A manager of fast food restaurant.  It sells chicken and closed on Sunday.  Started on Monday and loving it so far.  Very different, but it seems a good fit and where I am supposed to be right now.

Thanks for letting me share my good news!!!!!!

Comment by mroux on April 16, 2012 at 10:10pm

I wrote my comment from iPhone and it's ridiculous. Sorry folks

Comment by mroux on April 16, 2012 at 1:57pm

I agree with mark. Sorry I was not able to respond yesterday.
This advocacy is a good thing but it also invades your right to privacy and potentially HIPPA. If employer wants to educate its employees on awareness, they ought to bring an expert, a non employee third party to demonstrate this rather than placing you in a awkward position. There is a requirement to notify your employee of disabilities for purposes of potential accommodation etc and also because there is a legal obligation between employer and employee. However, there isn't a legal obligation on your end to educate or inform other employees without your consent. And you have to consider that employees dO not have legal obligation to you to keep your personal health co Durkin private. That creates risks of unwanted disclosure to sknekbe else and that may be your future employer.
That being said, I think it's best to cower and tell you'd boss your personal trepidation of embarrassment about it but you are extremely happy that the boss has taken an interest to educate. And in that endeavor, you'd like to assist in working with he to get E expert to come yk the office and educate etc. that way, u r off thd hook... Recognized your boss, got HR to involved zz and it looks like the company is empathetic abc that's bonus points for y.

Comment by Mark Wakefield on April 16, 2012 at 12:12pm

Sam -- there have been a few jobs I've held where that would have been an easy thing for me or would have put me in a very weird position. Especially if most people didn't know about my E. Last job I had was at a law firm where only the HR lady knew... until I had a seizure in front of everyone! So I guess that would be an exception to the rule (cat's out of the bag, so to speak.)

But if your boss is wanting to make it more of an advocacy sort of thing, my suggestion is to speak to both him and your local EF chapter, separately. Share with your boss that it's a touchy subject to you and also, if you're up for it, perhaps bring in support from the foundation so you don't feel so on the spot?

I think it's important to educate everyone in the office so they understand people with E are not any different than themselves but when it comes down to it, it's really you're decision and he cannot force that kind of thing on you. 

Comment by bryan farley on April 15, 2012 at 7:59pm

sam,

depending on where you live, you could have someone speak with you.

in some way, this could be a great opportunity. it also can be stressful and awkward.

One of the strange things about the ADA is that "potential employers" are not allowed to ask certain questions. While that might be a benefit for those in hiding, it works against those who are proactive. Will you receive extra credit at this job and future jobs for speaking about how an employer deals with accommodations? 

I do not know. How do you feel about doing it?

Comment by mroux on April 15, 2012 at 7:24pm

Sam--- I'm not at my desk. But when I get home I'll give u tips. It's not a legal advice just u know. But there's tacts u can use.
Chat later.

M

Comment by Sam Magee on April 15, 2012 at 6:21pm

My boss is making me speak at a meeting about my E. She wants me to explain what to do if and so on and so on. I understand the reasons behind it, but that doesn't make it any less awkward. What to do?

Comment by mroux on April 15, 2012 at 10:27am

I think it's great that ADA covers E. However, what people do not understand is the reality and the application of ADA. Just b/c you are protected does not mean that the law is implemented the way you want to. 

- ADA does not prevent "perceptions" of others of you. And that is hard to prove/disprove in the eyes of the law. 

- ADA requires employers to reasonablly accomodate you within the periphery of their business line, but that does not mean, they cannot terminate you for not doing the job or if it impacts the business. If the accomodation is costing money for the business and it is not constructive, they can terminate you. Employers do not do that UNLESS they have a reason to protect themselves. The way employers protect themselves from liability is : 1) they create enough evidence of "reasonable accomodation" 2) what they have actively done to provide that accomodation and what adjustment 3) the cost involved to do it; 4) scheduling changes, if any; 5) transition to another area of the work etc. These basic foundational groundwork is to substantiate their legal position that they have complied with ADA. 

THEN- after they have met that ADA "reasonable accomodation" employers have to show evidence that it is not commerically not reasonable to keep the employee and 2) they are not able to perform the job even with the accomodation and thus, causes them to lose money. 

It's subjective in some ways, but the initial burden is on the employer and they keep copious notes to disprove that it was for discriminatory animus. 

What should you do? Keep your set of notes. If you are in an office, and access to email, send yourself notes from it to verify the time and stuff and what was done. It prevents them from taking any arbitrary action. 

What do EMployers do? They avoid this problem by having a structured layoff and/ or mass layoff b/c that does not single out someone with disability or any EEOC issues. And then, they re-hire some people back. The only issue that someone with ADA or any EEOC has right to challenge is whether they are terminated for discriminatory animus or not. There is no requirement that prevents the business from offering or re-hiring some employees back.

Also, if you have to take time off, you should have FMLA kick in. And HR must have a substantive discussion on this. FMLA does not protect you if you are part of the mass layoff, but it does protect you when you exercise time off when you have E issues. 

The tense part of all this is, while the law says it protects you, it does not protect you from people's perceptions. And in job interviews, or anything, they should be focused on your ability, not your DISability. And so dressing differently, wearinbg a disability badge, etc ( while you should not be ashamed of it), it's NOT the issue. The issue is whether you can do the job with / without the disablity. Disability is only secondary issue once you get the job. 

Comment by Tammi Zavardino on April 14, 2012 at 12:52pm

Maggie never lose that line of thinking more people need to learn more about this so they won't treat us so differently after all we are not some space creature that they have to fear we just have a problem and like I have told others it could happen to them also and than how would they feel if people treated them the way they were treating others. I always treat everyone the way I want treated no matter what. Have a wonderful day.

Comment by Maggie on April 14, 2012 at 12:32pm

Hey guys! I know it's very difficult for all of us to get or hold on to a job, unfortunately not everyone knows what we go thru and that we can actually perform just as good as anyone else. I have lost many jobs since I was diagnosed as well as having great bosses. I just hope that more people are educated on what epilepsy is and that we can do everything everyone else out there can do! 

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