Epilepsy Talk

Epilepsy Abuse and Civil Rights | November 3, 2015

The following letter was written to local Legislators, Health & Human Service Agencies, The Office for Civil Rights and selected members of the President’s Cabinet…

Dear President Obama:

Re: Epilepsy Abuse and Civil Rights

I’m sure you’re aware of the incident when Supreme Court Justice Clarence Thomas’s nephew was beaten by hospital security in La. while in the throes of a seizure.

Then there’s the Pennsylvania woman who was handcuffed, shackled and restrained during an epileptic seizure because the police suspected her of being on cocaine.

There are hundreds of stories like these in news reports and the media.  That, I suppose is good for public awareness.  But it’s horrific for the patients’ who are being abused and denied of their civil rights.

Is there no education program about how to recognize the signs of epilepsy for police, first responders and hospital security personnel?

Is there no protocol?  It is not part of their job eligibility, training or internships.  Not only is that a gross oversight, but it can prove fatal for those who suffer from epilepsy.

We do not need any more lawsuits…we do not want any deaths…all we want is a dose of humanity and our American civil rights.

Please advise.

To reach the Executive Office of the President and its officials click: http://efa.capwiz.com/efa/dbq/officials/agencies/?id=4866&dir=efa&command=depresult&submit.x=3&submit.y=14

For a Congressional Directory, go to: http://efa.capwiz.com/efa/directory/congdir.tt

And the Department of Health & Human Services, plus the Office for Civil Rights can be reached here: http://efa.capwiz.com/efa/dbq/officials/agencies/?id=4185&dir=efa&command=depresult&submit.x=17&submit.y=19

Do your part.  Speak up…speak out!


  1. I recently had a seizure and fortunately there two nice people there and once I was OK they sent a police officer to see if I was Ok and I told him I waTo view this email as a web page, go here.
    mary Jane,

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    Thanks mary Jane,

    Be Extraordinary, I think oftenttimes times it never enters their minds that it was a seizure I am seriously thinking about getting a medical alert bracelet, so I am not mistaken for being drunk or on drugs. In addition the bracelet should say “Do not take me to a hospital as I will be OK shortly”


    Comment by mary levell — November 3, 2015 @ 4:50 PM

    • Love it. What a mission. What vision!

      As you can see — after 35 years as a copywriter and after almost dying (physically, not mentally) — Epilepsy Talk became my mission.

      Once my toe was in the water, I dove in and the past five years have been great and very fulfilling.

      I hope you can join me and the EpilepsyTalk family on our journeys.


      Comment by Phylis Feiner Johnson — November 3, 2015 @ 5:26 PM

  2. I love learning anything I can about epilepsy, and Phyllis you are to be commended for taking on this mission.


    Comment by Mary Jane levell — November 3, 2015 @ 9:17 PM

  3. Oh Mary Jane,

    This is what gets me up in the morning and what drives me through the day.

    Helping people understand their own condition and, hopefully, educating others.


    Comment by Phylis Feiner Johnson — November 4, 2015 @ 9:11 AM

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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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