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What legal rights do I have as someone living with Parkinson’s

February 22, 2021

By John Baumann, JD, ISWHTHP

*Inspirational Speaker Who Happens To Have Parkinson’s

In a strange twist of fate, when I was diagnosed with Parkinson’s, I was an employment lawyer defending employers against allegations of disability discrimination. I was just 41 years old and in shock when I heard the words, “You have Parkinson’s.” I believe many, if not all, people with Parkinson’s who are still in the workforce don’t know what to consider with respect to informing their employer. There are so many things that you feel that you have to deal with first, following diagnosis. Add to your list one more task: identify, and consult with, an employment attorney before informing your employer of your diagnosis.

Telling your employer you have Parkinson’s brings many concerns, including potential impacts this could have on your career. In the US, there are two primary legal statutes to be aware of that will impact your work as someone living with Parkinson’s. The first is the Family & Medical Leave Act (FMLA), which requires covered employers to provide employees with job-protected and unpaid leave for qualified medical and family reasons.

The second is the Americans with Disabilities Act (ADA), a civil rights law prohibiting discrimination against individuals with disabilities in all areas of public life.

Your Parkinson’s may qualify you (and possibly, your care partner) for FMLA benefits. FMLA time off includes intermittent leave. That is important because most of us living with Parkinson’s suffer from fatigue, and intermittent leave can be taken in small increments (hours if not minutes), allowing you to take periodic leave when you are suffering from any manifestation of Parkinson’s that prevents you from working for a period of time.

The ADA is violated if an employer negatively considers your disability in not hiring you, not promoting you, disciplining you, demoting you, firing you, etc. Further, the employer must provide any “reasonable accommodation” needed. While this is the employer’s responsibility, it is in your best interest to involve yourself in the process. Take charge. Provide input. You know how you are affected by your disability better than anyone. If you want to reduce the chance that you will be provided with an unacceptable or less favorable accommodation, you need to offer an accommodation that works best for you. At the very least, you are on record of providing an accommodation. Remember to put everything in writing.

It can be very difficult to prove that an employer violated the ADA. To help determine if an employer has violated the ADA, the courts have developed a 3-step analysis:

  • The individual must prove that they suffered an adverse employment action and that they are a member of a protected class (in the case of Parkinson’s, a disability). You clearly are a protected class, as long as you have notified our employer that you have Parkinson’s
  • The employer must simply “articulate” a non-discriminatory reason for the employment decision
  • Finally, the individual has the burden of proving that the reason given is a “pretext” — that not only is the reason given by the employer not the real reason, but also, that the real reason is because of your disability. So, you could prove that the employer is lying about the reason provided, yet fail to prove that the real reason is your disability and lose the case

It is unlikely that you will find a “smoking gun” email stating, “We should fire Joe Smith because he has Parkinson’s.” It’s more likely that to uncover a pattern of discrimination (i.e., everyone living with a disability is disciplined, demoted, not promoted, or fired). My advice is to bend over backwards to not give your employer any reason to discharge you. If you are seeking employment and feel that a company violated the ADA by not hiring you because of your disability, you have a much more difficult hill to climb. You must prove that the companies you applied to for a position did not hire you due to your disability. If you secure an interview and you decide to disclose that you have Parkinson’s (for instance, when your hand tremors while you’re answering questions), the potential employer will be on notice of your disability and, if they don’t hire you, be subject to the above 3-step analysis.

There is usually some objective component to the hiring process, so you would have to obtain access to the results for you and the candidate or candidates hired. This is not easy to do. Furthermore, if there is a subjective component to the hiring process, it becomes even more difficult to prove pretext, or that the reason the prospective employer had for not hiring you was not what they’ve stated, but instead solely the fact that you have Parkinson’s. Finally, before filing a lawsuit under the ADA, you must file a complaint with the Equal Employment Opportunity Commission (EEOC). The EEOC may be able to assist in obtaining the necessary records to build your case.

All this said, you should be encouraged that some employers have seen the light and are making changes, such as adopting a “Workplace Proactive Prevention Culture Program” to teach management how to comply with the law in the statute and in the spirit of the law.

Just as Parkinson’s is different for all of us, each job situation is unique. The best approach is to take the time to pause and consult with an employment attorney before you find yourself in an adverse situation. It’s important to note that many companies really do want to do right by their employees. Unfortunately, you might not know for sure which side your employer is on until you’re in the situation of disclosing your Parkinson’s. When the time comes to have that conversation, you want to have the peace of mind that comes from knowing your rights under the law and being ready to speak with confidence, prepared to advocate for yourself as necessary.

In conclusion, now that I look back on it, I believe that Parkinson’s (or maybe the medicine I was taking) negatively influenced a few important decisions that I made during those first six years. For example, if I had anything to say to those newly diagnosed, I would say that you may not want to disclose your condition to your employer. Talk to an employment attorney and let them help you decide what to tell your employer in light of FMLA, ADA, and any other law. Don’t give them any excuse to fire you. Simply put, they don’t want you working for them, if they can find a way to terminate you without reference to PD, they will.

 

Despite these mistakes, I was able to do what was necessary to oversee a huge project, the sale of the company. I was also able to teach a college night class. When I no longer worked as a full-time attorney, with sufficient rest, I was able to win what was thought to be an unwinnable trial nine years into my PD. Granted it wiped me out for weeks, but I did it and we won. I practiced for two more years when the Parkinson’s caught up with me. I was able to control my symptoms through shear will power, staying positive and focusing on my purpose. In fact, I was able to write a book on success: Decide Success, You Ain’t Dead Yet (I just released a 2020 edition that you can get by writing to me at jmbaumann110@gmail.com). Not only success with PD, but also success in school and at work.

I have had an exciting life and made the most out of any situation. I can tell you that PD has been a test. In order to practice what I preach, I “live the best life possible.” I have brought my inspirational presentation to as many locations as possible and enjoyed visiting new (as well as old) places.

 

 

 

 

 

Testimonials

We all felt inspired and enjoyed listening to your presentation. Even though we are not living with Parkinson’s, we felt boost of motivation to continue helping those who are living with this disease. I am motivated to make more personal phone calls to people living with PD and asking how they are doing. Sometimes that “extra” bit of kindness truly makes a difference to someone. I am also motivated to research program ideas and partner with other organizations that may have similar values.

I learned that life is unexpected and that you cannot control it. What matters is your attitude!

-Great way to end the day, brave man, thank you very much!

-Good, excellent, great, outstanding speaker, very moving!

-Inspirational who just “gets it”

-Positive thinker and very funny!

-Honest speaker but also humorous!

Parkinson’s Society of Southwest Ontario, Canada, Symposium Keynote Presentation

“whatever hand life deals you, whatever life changing adversity you have to endure, you still have some control over it.” “You don’t have to just to live well,” he advises,” but live an Amazing Life.” The formula he proposes: Faith in yourself, discipline, determination, desire, intensity, and inner strength.

MARY SPREMULLI VOICE AEROBICS

Yes, you touched every person at our conference, who will in turn change and impact so many others. The feedback from our participants was overwhelmingly positive. You are the only speaker to ever receive a standing ovation. Thank you for taking time to share, motivate and inspire. We are blessed to know you.

DIRECTOR OF MARKETING REHABILITATION HOSPITAL

I will be honest. During the first 10 minutes of your presentation, I started reading work related material on my laptop. For surely, I had watched your You-Tube and seen your videos and knew what to expect. Surely, as a therapist I had studied this disease, the pathological components, the psychological components, the treatment alternatives……..Surely, I understand it.

Not so much. You caught my attention and I was enthralled. You were able to couple the impairments you experience with the emotions felt. You walked us through your life with the disease through “your eyes”. A perspective that a therapist/nurse rarely has the chance to hear. We get so busy telling patients how to deal with x, y and z, but our eyes are blurred by the science of it all most of the time.

You did it through truth, Through your humor, humility and determination to tell your story. One that most deservedly needs to be shared.

I will advocate to have you share your story. I appreciate your determination, diligence and dedication.

CHIEF EXECUTIVE OFFICER REHABILITATION HOSPITAL