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.