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Soon after diagnosis and not knowing what the future held, much less knowing how soon the future would come calling and I would have to stop working, I looked into early retirement options along with disability-related issues. This coming from a person whose first question that came to mind when given a PD diagnosis was, “When does the house get paid off?” I was in no way being selfish but was considering that I had two girls, 15 and a 12 at that time, still needing to be cared for, nurtured, and make sure they finished their high school careers and go on to college. Looking back at those initial numbers, considering how many years I had worked as a teacher in the public school system, they did not look promising. I took the initiative to contact my teacher organization and asked about disability-related issues, including what I needed to look forward to, what things I needed to take care of, and how to proceed if I needed help with protections afforded under the Americans with Disabilities Act.

The staff attorney’s words still resonate today, “There’s the law and then there is reality.” “What do you mean by that?”, I would ask. Well, this law that is in place to protect people living with a disability is not guaranteed to protect those of us living with a disability. Let me explain…

If you wish to be protected under the law, you have to let people know that you have a disability, plain and simple. The attorney went on to say that if she were in my position, she would tell everyone from the superintendent of schools to my school custodian. The reason being that a person seeking protection under the ADA is unlikely to get the help needed because an employer can say that they never knew that you had a condition that could be covered under the ADA.

Many have shared their stories of being able to continue working after a PD diagnosis, yet many more have shared privately, their concerns about being fired if their employer finds out about having Parkinson’s Disease. The vicious nature of this disease rears its ugly head because, as most of us know, it is very difficult to hide the symptoms that know not when to remain under control and can persist at the most inopportune times. A fellow teacher asked me just this summer, “Can I be fired if they know I have Parkinson’s Disease?” As I have been prone to answer on several occasions, yes and no. No you cannot get fired for having PD and yes, it is possible to get fired because of your inability to function at your job because of PD.

There is the law that protects us in our work site from being discriminated against because of a disability and then there is reality when it comes to an employer standing against a person with PD, being able to say that they had no reason to believe that there was a disability. Why would they not want to help? Several reasons come to mind. One, if my productivity is not equal to my fellow employees, there would be a reason to say that I am not fulfilling my job duties to the best of my ability. Two, money comes into play if an employer has to provide accommodations that allow a person to continue working in the same or comparable position. Third, the fact that not all employers have the best interest of people living with disabilities at heart. This can be with any related disability but let’s talk Parkinson’s Disease specifically.

Knowing what we know about PD, add the fact that it can be very embarrassing being in public with uncontrolled symptoms, and then compounding stressful situations to the mix can put even the tamest of symptoms into overdrive.

Another factor to consider, which corresponds to the financial issue that employers face, is what accommodation will allow you to continue working. As you well know, each job poses its own challenges but the idea is seek only the help that will help you to continue being productive, on par with others in your same position, with the accommodations permitted to be in place. It is a “give and take” process. You can ask for it but you are not assured that it will be permitted or approved. My request to you is to continue being productive as long as possible so that you may have the best quality of life possible. Many other stories have been shared by those who have given up too soon and regret it when they find out that they could have sought help and protection under the ADA but were reluctant to seek it. Parkinson’s Disease already takes so much from us that allowing it to take our livelihood from us can be the final straw for some among us.

I’ve been blessed to be able to continue working with special needs students. I share the fact that I live with Parkinson’s Disease and go on to tell them that although I have a disability, I am not disabled. I want them to understand that although they have learning disabilities, their job and mine are to find the best ways that they can learn to reach their potential. I have far before I reach my potential in life and I’m not about to let an uninvited, unwanted, and undesired incurable disease slow me down. I take that back… it may slow me down at times but I’m committed to get back up and start again… and again… and again…

[Disclaimer: The information contained in this post is mine only and is not intended to provide legal advice when it comes to protections under the ADA. Please seek advice from whichever resources are available to you.]

For those of you in the 20 countries, to date, that have taken the time to follow my blog, Thank You! for your kind notes and comments. I would love to hear from you on issues that are important to you related to PD, how you deal with them, what help is available to you, and if there are any governmental protections afforded to you based on a disability. I welcome the opportunity to talk about these, and write about them if we can get the attention of those who can make changes for the better. Let us help advocate with you and for you to make the quality of life the best that it can be for our family of people living with Parkinson’s Disease in all parts of the world.

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3 thoughts on “The Americans with Disabilities Act: “There is the Law and then there is Reality”

  1. Hi Israel, I was a speech language pathologist working with special needs kids, all of my life. I had filed a request for ADA accommodatins the year I was diagnosed, and HR said they were honoring them, but in fact my work assignment was expected to be as big a caseload as my colleagues. I did not ask for a reduction in caseload, but I did ask for one school building assignment (so I wouldnt have to lug a big bag from school to school. ) The HR department of my school district failed to update and inform my supervisors of my PD, and, quite frankly, I wasnt sure I wanted to tell them. However, after providing services for disabled children for so long, I felt betrayed and abandoned. I informed my immediate supervisor and principal that I was having job difficulties (compounded by my medications) but i had to literally fall apart at work to finally take a long term medical leave. I had DBS because I wanted to get back to work, and because I also have two daughters to co-parent. From the time I returned to work til 2010 when I finally left because my preschool-eighth grade school required too much physical and mental agility. It was more the attitude I was fighting against, that I no longer was a valuable, committed member of my schools teams because I was ‘disabled’. No one would openly admit it, and it devastated me to lose my reputation of competent, hard-working professional. (The teachers union reps were not much help) The lawyers I retained went AWOL (another story)

    I was planning on working forever, when I was diagnosed @ 45. I thought I could, but the cognitive issues, multitasking, memory and time management finally forced my retirement in March, 2012.

    I miss~greatly~ the children and families that I worked with. I missed giving children their voice, because so many of us don’t have one or can’t use it.

    This is why I applied for, and worked hard at PAN last year, and continue to give support, resources, and praise for those people and programs making a difference.

    You are one of those, Israel. May you be able to teach for many more years..

    Like

    • Thanks for sharing. I must say we share much in common. Unfortunately, it seems that employer ignorance is rampant when it comes to dealing with issues related to disablity and accomodations. Many employers break the law by turning a deaf ear and a blind eye to the “problem” and pretty much force people to quit rather than fight a losing battle. I look forward to working with you on issues important to the PD community with the Parkinson’s Movement.

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      • Israel, yes and part of the reason more of us don’t fight the ADA law is because we simply “wear down”. I believe this is why the ADA is still so “gray”/abstract: because many of us tire out instead of fighting employers breaking of the law, even employers who made sure I followed the letter of the ADA law when serving students with disabilities. The irony drives me crazy!

        I’m ready to fight; put me in, Coach!!

        Like

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