Epilepsy Talk

Epilepsy, Employment and the Law | February 20, 2019

Here are some tips for interviewing, work and also your legal rights.

Disclosing Epilepsy with a Potential Employer

It’s not always necessary to discuss epilepsy with a potential employer.

Whether you do or not is up to you.

If you have excellent seizure control and the employer does not ask any health-related questions, there’s no reason to start talking about epilepsy unless you want to.

Under the Americans with Disabilities Act (ADA), employers may not ask any health-related questions until after they have offered you the job.

If you decide to talk about your epilepsy, or if you have to because of a legal question from the employer (after a job has been offered), explain that if one should occur, it will only last a very short time.

And always reassure how this condition actually affects your ability to perform in a job.

“I’ve had E since I was 21, and I never had any problems with it preventing me from getting a job for 30 years. The trick is don’t let the employer feel as though you think it’s an issue, and they won’t feel it’s an issue.” — David Osborne

On the down side; employers may discriminate because of the stigma associated with epilepsy, misconceptions about its medical and social aspects, unfounded fears of legal and medical liability and the misconception that people with epilepsy are not as productive as others.

But new laws have begun to change the landscape of employment opportunities for people with epilepsy and other disabilities.

Interestingly enough, some employers fear hiring people with epilepsy because they’re concerned about higher workplace insurance rates or believe that employees with epilepsy will use a lot of sick leave.

Workplace insurance rates, however, are determined by how hazardous the type of work is and by an employer’s overall claims record in the past, not by the physical condition of individual employees.

And if you choose to disclose at the time of hiring that you have epilepsy, an employer only may ask two questions: whether he/she needs a reasonable accommodation and if so, what type.

The employer also must keep any information an applicant discloses about their medical condition confidential.

Your particular seizures may not require any first aid or help. But if you might need assistance, you should work with your employer to create a plan of action.

How Should I Tell My Coworkers?

Here area few tips to follow when discussing your epilepsy:

1. It’s often a good idea to review first aid measures.Others need to know what happens during a seizure.

The explanation should be reassuring. It’s normal for them to be frightened when first seeing a seizure, so they should be told that the risk of serious injury is small and that the seizure doesn’t
cause pain.

2. They should know what is going to happen when you have a seizure such as how you may behave before, during and after the seizure, what they should and should not do if one occurs.

(Like not to stick anything in your mouth during a seizure, because the belief about swallowing your tongue is a myth. And they should not hold or restrain you, unless it is absolutely necessary for safety.)

3. You should tell them when to call for medical personnel or an ambulance, but it should be emphasized that this is rarely necessary for a person with epilepsy who has a single seizure.

4. Coworkers should also know that you should be left alone in a safe place and seem to be all right.

And if you do have a seizure, when you have fully recovered and returned to work, you should acknowledge what happened, thank the people who were helpful and ask if they have any questions.

(I chose to tell one person in each setting because I was in advertising at a highly visible job with lots of meetings, presentations and clients galore. And no, I didn’t tell the clients!)

“The thing is, being up front is important. Telling them you have E is important, but I would advise doing it after the job offer. Otherwise they may ‘go in a different direction’ because of it and have no fault.

Telling a potential employer has two advantages, one is that they are aware in the event that you have a seizure at work. The other benefit is that you can potentially get something from your doctor that says that if you are feeling ill or what have you, you can take off with no repercussions for you. Its called an intermittent leave of absence.

I had one at a call center before and had to take off at least once a week…but at another job they wouldn’t hear of it. That was my experiences though.” — Nickolas Doty

What Are My Legal Rights?

1. Unfortunately, sometimes it’s necessary to take legal action to keep a job.

The Americans with Disabilities Act (ADA) prohibits discrimination in the workplace based on a person’s disability if the person is capable of performing the essential duties of the job.

2. Reassignment may be necessary where an employee with epilepsy can no longer perform his job, with or without reasonable accommodation, unless the employer can show that it would be an undue hardship.

The new position should be equal in pay and status to the employee’s original position, or as close as possible if no equivalent position is available.

The new position doesn’t have to be a promotion, although the employee should have the right to compete for promotions just like other employees.

3. If you feel that you’ve been fired or demoted because of your epilepsy (and your company’s Human Resources Department is not able to help), think about seeing a lawyer.

In many places, this kind of legal assistance is available at low-cost.

4. Your first step should be to become informed about the relevant laws and the restrictions about disability discrimination.

(It may be helpful to speak with a representative of your local EFA Chapter.)

You could also speak with the protection and advocacy staff of the state human rights commission, the Equal Employment Opportunities Commission (EEOC), or a social worker who specializes in employment issues.

5. Also find out about the ADA. (American with Disabilities Act.)

It applies to all employers, employment agencies, labor organizations, and joint labor-management committees in which at least 15 employees work for each working day in each of 20 or more calendar weeks.

The ADA excludes the federal government or other employers that receive a certain level of federal support (because they are subject to other similar regulations), as well as Indian tribes and private-membership clubs that are exempt from taxation.

6. Title I of the ADA provides that people with disabilities cannot be excluded from employment unless they are unable to perform the essential requirements of the job.

7. You are subject to the same employment rules as others when it comes to upgrading, promotion, demotion, tenure, transfer, layoff, termination, return from layoff, and rehiring…

8. The same with rates of pay or other compensation and changes in compensation…

9. Job assignment, job classification, position descriptions, lines of progression, structures and seniority lists also apply…

10. Leaves of absence, sick leave, or other leave…

11. Fringe benefits, whether or not administered by the employer…

12. Selection and financial support for training, including apprenticeships, professional meetings, conferences and other related activities, and selection for leaves of absence to pursue training…

13. Any activities sponsored by the employer, including social and recreational programs…

14. Any other term, condition, or privilege of employment.

Tip: “Your best places you want to look for jobs is find places that post EOE ( Equal Opportunity Employment). These type of places are in agreement to hiring people with disabilities.

They work with the disability act if you are hired, even if you have not told/written or they have not asked if you have any disability. You have a seizure on the job, they are supposed to work with you and figure out a plan that works for both of you.”— Kari Lynne Brauer

It’s the law!

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  1. There are some people who think they are the ‘leader’ of everything even if they do not know that a person just has staring spells. (I guess the Director figured any one who has Epilepsy always has grand mal and falls to the floor………………! ) I had been working for over 6 years before anyone knew my situation. My spells only amounted to brief spells, and most of the time I could go ahead with work without having any interruptions. So- after I had a spell (when I was working with another woman) , I told her I would be fine. Huh? She ran off to the boss like a little girl who was telling ‘mommy’………… The director made me compose a letter that was put in everyone’s locker. Well, after that, I was secluded from helping people.

    After the sixth entry, I got my disability. Karen


    Liked by 1 person

    Comment by karen629@charter.net — February 20, 2019 @ 10:41 PM

    • With me it was like “Phylis, why aren’t you paying attention!”

      But, then it got worse and I really zoned out.

      To the point where I would just close the door of my office, until my aura was over.

      (Often it took a while.)

      One time the copy machine next to my office set fire.

      Then, the whole floor was evacuated, but I was out cold on my locked office floor.

      A while later — not knowing about the drama that had ensued — I came out of my office and asked what happened to the copy machine.

      Everyone looked at me as if I was from Mars.

      They had NO idea I was in my office (out cold) the whole time.

      My dirty little secret.


      Comment by Phylis Feiner Johnson — February 20, 2019 @ 11:01 PM

  2. Didn’t anyone have enough ‘brains’ to check behind the door of the room you were in when the emergency struck- didn’t they know you were there that day?

    Guess it’s like it always was for me- people like us were simply ‘outcasts’ from the rest of the crowd and no one wanted to associate with us- nor cared if anything happened to us.

    Yes, when I’m in bed and have an aura, I always tend to pull the sheet up over my head until it subsides.. Something about it just gives a feeling of security.

    Liked by 1 person

    Comment by Karen — February 22, 2019 @ 1:19 PM

    • I was there alright.

      But once my aura started (happily a warning for me), I hit the floor and closed the door.

      My boyfriend (not his fault) worked right down the hall.

      But, since the door was closed, everyone thought I wasn’t there.

      Although the entire floor was evacuated.

      Yes, I was there.

      You might say: “The lights were on, but nobody was home!”


      Comment by Phylis Feiner Johnson — February 22, 2019 @ 2:05 PM

  3. I sued my employer after my meds stopped working after 30+ years and seizures kept me at home. It was a rough road and very difficult. Keep in mind that the ADA is a law. You have to hire an attorney and prove you case after going through the EEOC. Even though I prevailed in the end, I lost my job and was left with the realization that the people can be heartless and cruel. Anyone who feels like epilepsy is the reason for discrimination by their employer should stand up for their rights. But always consider the unintended consequences. Life is short, and if you’re able to cut your losses and move on, I recommend that path. Like I said, the ADA is only a law, exposing the violation is a whole different thing. Be well.

    Liked by 1 person

    Comment by Tom — February 23, 2019 @ 1:49 PM

    • Tom, it sounds like you had a pretty tough time.

      But I salute you for your persistence and winning attitude!


      Comment by Phylis Feiner Johnson — February 23, 2019 @ 2:04 PM

      • Thanks Phyllis. The reality (in my case) is that the PEOPLE who harmed me skated by and kept their six-figure jobs, while the employer (our government) paid for their wrong doing. In my world of justice, they should have been terminated and I should have been able to keep my job. This is where the ADA fails to protect us….it treats employers (entities) like perpetrators, while the real criminals hide behind indemnification clauses and big cash settlements. If the ADA was really meant to discourage this kind of discrimination, it would have included provisions requiring employers to recover settlement cost and legal fees from those found violation of the Act. Once again, government put a fancy bandaid on a horrific reality that will continue to be a very serious problem for those of us who are “different.” In doing so, the ADA fails to correct what “real” civil rights legislation is supposed to accomplish by criminalizing this unacceptable behavior. In fact, in my case, the band of senior managers were simply empowered to do it again to the next individual with a hidden disability. So, what to do? I know I’m not the only one who feels like the ADA left me short changed. Americans should demand better protections. Oh, as for the EEOC being a gatekeeper to the ADA, they are only interested in the discrimination flavor of the day and serve only a very small percentage of affected individuals. When my complaint was being processed, I vividly recall the nauseous feeling i had while speaking to an EEOC staffer who tearfully admitted that she had filed a disability complaint against her supervisor.

        Liked by 1 person

        Comment by Tom Waltz — February 24, 2019 @ 8:18 AM

      • Oh Tom, the very agencies that are meant to protect us seemed to turn on you.

        Without regards to others.

        That you (and others), got a raw deal is unmistakable. And unforgivable.

        And you worked for the government? Now that’s a paradox of freedoms.

        I think only a lawyer could have helped you stand up for what was rightfully yours.


        Comment by Phylis Feiner Johnson — February 24, 2019 @ 10:12 AM

  4. Hi I’ve had E for 10yrs,I have done Catering work but as my seizures became more frequent I had to consider something else then I thought maybe cleaning for a Hotel,I applied,had an interview,was honest about my E,got the job,well excited the Interviewer then said I should watch the lady who I was shadowing but no I wanna work not watch,after cleaning for 3hrs I was dismissed as I am not insured.I was so sad.😞.Now jobcentre push me to work and on b2 occasions I never got paid told Advisor they did not believe that the agency never paid me it was hard I then ended up in a induced coma,and then because I didn’t let DWP know they stopped my ESA.AND NOW IM ON £180pcm,and I’ve not paid my bills..OMG.Never mind what can I do..


    Comment by Anthea — March 5, 2019 @ 12:52 PM

  5. As for your dismissal, can you go to human resources to prove that you put in those hours without pay?

    As for being not insured, that’s their problem, not yours.

    Perhaps this link will help:

    Health Insurance — No-Cost & Low-Cost


    And as for your bills, this may be useful:

    Access 2 Wellness — designed to assist people with limited or no health insurance get the help they need to lead healthier lives. People can learn about a variety of assistance programs that, combined, offer more than 1,000 prescription medicines and medical products for free or at a discount to qualified individuals. http://www.access2wellness.com/a2w/index.html

    The HealthWell Foundation — committed to addressing the needs of individuals with insurance who cannot afford their co-payments, co-insurance, and premiums for important medical treatments. http://healthwellfoundation.org/

    Needymeds — a list of programs that assists people who cannot afford medicine or healthcare costs. This information is available anonymously and free of charge. http://www.needymeds.org/

    I hope this helps.


    Comment by Phylis Feiner Johnson — March 5, 2019 @ 1:04 PM

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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

    View Full Profile →

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