Bureaucracy and the Challenges of the Early Retirement Process
By Florencia Cerruti, person with Parkinson’s Disease and author of Rebirth at 50: in the end, it was not The End.
Very shortly after my diagnosis of Parkinson's Disease at age forty seven, I asked a neurologist how long I should work. His answer was: "Until the last day that the disease allows it."
His words echoed within me: what would happen that day? Would I be the one to decide or would it be my colleagues and bosses at work who would warn me before I had the chance to decide? What would the signal be? In any case, what would it be like to work until the last day the disorder would allow me to?
Obedient and abiding by the rules and procedures, I decided that this would be the case.
The first obstacle I ran into was the taboo surrounding neurodegenerative diseases: one finds it difficult to speak naturally, but also others are afraid to bring it up. In my case, mentioning the word “Parkinson” without my voice breaking, took five years. How do you express your needs in the workplace, if that implies spreading the news when you are not prepared to?
On the other hand, what are the options that the system provides for a worker in this condition? If it is a question of reduction of working hours, the law of public officials in Uruguay (which applies in my case) establishes that you can work part-time for a maximum of nine months, after which the full-time regime is resumed or resignation is required. Could it be that it is not contemplated that someone with a chronic and neurodegenerative disease would "dare" to continue working? If it comes to appealing to the working conditions that govern the entry of people with disabilities, the law says that they will be the same in terms of working hours as those required for people without disabilities.
I was fortunate that the diagnosis found me working with a team of people who know what it is to deal with vulnerability, and that contributed a lot to not making my process, which was already quite hard, even more difficult. However, outside of my closest colleagues, I did not talk about it and I was never keen to use my illness as an excuse to avoid a task, or as an element of manipulation.
“Come anytime you want!”,
an official from another Directorate told me in a loud voice and with sarcasm, when he saw me arrive at mid-morning, after my rehabilitation sessions, and, in the same sense:
“Who could have an armchair like you in the office! It seems that some people do not come here to work!",
in relation to a sofa that I had been begging to be allowed to keep to lie down for a few minutes when the fatigue occurred.
One day, I found a document from the European Union that established recommendations to implement in the workplace, to facilitate the permanence in their jobs of those with neurodegenerative diseases. In the case of workers with PD, the measures were five:
a flexible schedule allowing time for medical appointments and rehabilitation sessions;
a place to park the car;
a quiet place to work;
a resting area;
a possibility of working from home.
I had been working for about five years after the diagnosis when I mentioned this list to my superior. He told me that it would be very easy for his boss to authorize the place to park, and that working from home I already knew I could do it when I needed it. In fact, thanks to an intervention made by a co-worker, I had flexibilities with my work schedule, but I could never feel it as an established right for people with my illness, and rather I felt it as a privilege. Indeed, at one point when I made this proposal to work from home, the answer I got was:
“Well, but not on Fridays, nor always on the same day of the week, nor every week, nor now that we have this urgent task to finish".
Nothing to clarify, it had to be done so as not to attract attention, because it was not a right, it was a privilege, and I understand it, because the measure was not covered by any regulations that supported whoever authorized it.
I was also told that in the building it was practically impossible to have a quiet place to work. With the help of some colleagues, I toured the place trying to apply my creativity. Could I put a cot in the breastfeeding room to lie down for a while when I felt fatigued? It was not possible, there was no way it would fit. As much as I gave free rein to my creativity, there was no reasonable alternative. It is difficult to explain that even thinking is tiring, that talking is tiring, that planning a task is tiring, that trying to concentrate leaves you more exhausted than if you had run a marathon. I would come home to lie on an armchair, unable to do anything else for the rest of the day. Sometimes not even that: my husband would pick me up and I would recline my seat during the trip without being able to say a word. With his help we came to think of alternatives for the necessary rest during the workday.
We glimpsed two: renting a room through Airbnb in a nearby building to go lie down when needed, or leave the car in a parking lot where I could go at noon to eat and rest. We even thought about the possibility of having dark films on the windows of the car to get some privacy.
Then came a change in the organizational structure and I was left in charge of a smaller department than the previous one, which brought me some relief. However, being a new and small unit, we were assigned a tiny office, without light or ventilation, separated by just a screen that did not reach the ceiling of the corridor from other offices. Next to it was an official who played loud music, who laughed out loud, sang and swore. My efforts to focus and coordinate the team became inhumane, but it didn't end there. Above my desk, there was a gigantic air conditioner, which blew freezing blasts above my head. There was no wool poncho in the summer months to warm me up. The cold was concentrated poison for my symptoms. The dispute over the remote control of the air became the center of my thoughts.
Until that moment, I had never made any complaint to the Occupational Health Unit. I never could bring myself to do it. However, the problems of coexistence with the occupants of the adjoining office motivated a co-worker to ask the Unit to attend to the situation.
I had been working for seven years since the diagnosis, almost twice the average time (4.22 years) that employees in the European Union "endure" in their jobs, when my doctors began to suggest that it was time to think about retirement from work, and that the effort I was making was accelerating the progression of the disease. I don't remember ever asking for medical leave. The results of the EU study were published with the subtitle: "the system has failed to support people with Parkinson's Disease" and was intended to shed light on the challenge of balancing symptom management with maintaining employment among persons with Parkinson’s.
I think "endure" is a perfect term. They “endure” all the forces that push them out of the job market. Those forces to overcome, day by day, minute by minute, in my case, for 2555 days, among others they include:
apathy and depression;
anxiety;
difficulty concentrating and making decisions;
fatigue, the exhaustion that follows the exertion of each physical or mental act;
the difficulty of belonging to a society that, on the one hand, lacks information regarding the disease and particularly the possibility of young people of active age suffering from it;
how little or not at all prepared the workplaces are to accommodate those who decide to continue working;
social laws, which push for early retirement.
Googling, I found an article in which someone had investigated the moments when people with PD decided to retire from work, and this point was practically unanimous: when those who have been enduring cry out:
“I can´t take it anymore!".
So easy and so difficult! So logical and so misunderstood!
One feels that having reached the point of establishing that "I can't take it anymore" was an act of great courage. What you can't imagine is the courage you will have to muster to get through the stages that follow. If you intend to retire early, the first step is to obtain a disability assessment. I do not know which required more courage of me: sharing the result of the imaging study that showed the defective areas of my brain, or going through the door of the building that carried a large sign that read "Disability Assessment."
Then comes the appointments for the "disability assessment". A doctor who has studied your medical file and the reports prepared by the professionals who have done the clinical follow-up, and who support the request for early retirement. I was aware that my future was at stake, my quality of life for the next few years. I thought of the power of that man who was assessing me, and the irony that in those few minutes someone would be able to change the outcome of my situation.
To make matters worse, I started on the wrong foot. I began by saying: "It is difficult to explain for someone who did not experience it…." , and before I could finish the sentence, the doctor told me that he was not going to allow that statement, since he had been in the profession for thirty years and was able to understand what was necessary, even though he had not suffered from it.
I wanted to tell him an anecdote to explain how tired I was. I related to him that the dentist had told me that he had to remove a wisdom tooth, and that in my head, the first idea that crossed my mind was: "excellent, that way I don't have to work for a few days!". However, a year passed without me being able to gather strength to call the dentist, because one usually leaves for later everything that is not strictly urgent, when each thing, however minimal it may seem, requires an unimaginable effort. The doctor replied: "you will not have called him because you were afraid."
When we were finishing, he told me that he had observed me during the interview and that he had not seen me shake at any time, so there was no impediment to being able to write. I thought to myself: "I am not going to explain that precisely what led me to see a neurologist was my difficulty in writing, but due to stiffness, not to trembling." I was also thinking about the “off” periods of my fellow travellers who present tremors. This is the name given to the periods in which the medication does not work, which happens very often a few years after starting them..
At the end of the interview, he told me that he was going to ask other specialists to see me, but that from his point of view I should not give up and could improve with the help of some therapies.
There I almost despaired.. “Therapies? What therapies? Do you know of anything that I can do that I have not done? Tell me, please!". I did not have the opportunity to tell him that I do psychological therapy, meditation, yoga, tai-chi, reflexology, acupuncture, aerobic gymnastics, facial mimicry exercises, physical therapy, tango therapy. and that since I started with extremely painful episodes of dystonia, I had already enrolled in an online program that adds specific exercises for the legs, music therapy, exercises for the eyes, breathing, and a host of other "therapies". Anyway, he told me that that was his opinion and that he was not responsible for the final ruling.
All these interviews are aimed at evaluating the percentage of disability according to a tool called “Baremo” (a scale). The methodology considers parts of the body that do not work or that do it badly. I understand that it is necessary to generate an objective method to establish the degree of impediment to continue working, but isn't there a more humane way to do it, because humanly, its atrocious. Successful completion of this inhuman process, results in being labelled "incapacitated for all kinds of tasks". I understand that it is what the law states, but can't we find another term? Some friends on this journey have shown me the statement with tears in their eyes, “totally inept” read the heading of the file of one of them.
I feel that the whole process is done to certify if the person is capable of continuing to work, with little concern about the extent to which continuing to work affects the evolution of the disease. Nor did anyone in the process ever ask: "what could he continue to do, without affecting the course of his illness and without damaging his self-esteem?" or "are you willing to continue actively doing any task in a format that suits your possibilities?"
When we talk about a neurodegenerative disease diagnosed when one is so young, it seems highly unlikely that one will be able to continue working until reaching the stipulated age for normal retirement. Early retirement is then presented almost as a certainty. The million-dollar question is when. How long to endure? Why endure?
The first medical interview was followed by two appointments with specialists: a neurologist and a psychiatrist. I left the neurologist's appointment worried. It had been extremely short. Just a few motor tests and the question of whether I had fluctuations. No inquiry into how my motor and non-motor symptoms interfered with my work activity.
Finally came the consultation with the psychiatrist, who went through the medical history while asking questions. At one point he said to me "your psychiatrist says here that you were in Mexico presenting your book, how do you explain to me that, suffering from depression and with no desire to socialize, you felt like going to Mexico to give a lecture?”. When he asked then me what the book was about, I answered: "my book is about my experiences of five years with Parkinson's Disease. writing it and presenting it to help others so that their processes are not as difficult as they were for me, has helped me to find a sense of what happened to me, and it is the only thing that really motivates me to socialize".
I thought to myself, "I'm lost, I'll never be approved for early retirement now". Yet I passed the test. As of January 1, 2022, I achieved the status and label of "incapacitated for all types of work".
Along with this shocking ruling came the peace that accompanies the recognition of the right to rest and care. It also brought the strength and impetus to continue undertaking what I had discovered to be my mission in life. One of my last dreams to come true was the creation of a group for young Uruguayan women with PD, who provide company and support for each other on a daily basis. I formed it gathering the readers of my book who had contacted me up to that moment. I never suspected the impact it could have. I never suspected the need for this space. Perhaps it has been one of the most important things I have done in this life.
Translated by Marie Perry. Photo by Miraryver, Maria Jesus Otero.