Story about Spinal Muscular Atrophy .

Corina

Jan 23, 2016

By: Corina


Ever since I was a child, I have had the wish to study medicine – or something similar. As soon as I could read reasonably well, I devoured the medical contributions of all periodicals one could think of. But my wish to study medicine came to an early end. A physician in a wheelchair, and on top of that, somebody who could hardly move her arms, seemed like an illusion. Maybe, today, I would see things differently. …
So, biology was what remained for me. An advisory talk with the Arbeitsamt (German Federal Labour Office) shortly before I completed school nearly robbed me of this dream, too. People with physical impairments in my situation were encouraged to choose business studies or law (help! anything but that!) or, if they really had to study something technical or scientific, then information science. At that time computers were a closed book to me, and maths was not exactly my best subject either. Even the risk of never receiving any type of support from the Labour Office by opting for biology could not change my decision. I assumed, at that time, that I would not find employment anyway, so why not study something that really interested me.
During my first talk at the faculty of biology at the University of Mainz, the head of the faculty showed great astonishment, but fortunately no rejection. Although nobody could imagine how I would complete the studies, I should by all means start. I would see for myself that it would not work. All right, I had persuaded the university. Now I could prepare for the next fight.
When I finally wanted to resume my course of studies, I was probably the first student applying for personal assistance. I was assisted by a young man who was performing his social service, I had my place at the university, and I was full of energy. That the rooms for most of the lectures and seminars could not be accessed in a wheelchair did not at first give me a reason to complain. After all, I first had to provide proof that I was capable of studying. Therefore, my assistant always had to carry me up and down the stairs in my wheelchair.
Biology courses are very practice oriented. For my practicals, I soon took to forming working groups with other students. With the book and the script in my hand, I was the one who planned and documented the procedures for experiments. Luckily, my professors also supported my system, and so long as my final test papers met the performance standards I also received my seminar certifications.
While preparing my diploma thesis, I started looking for employment for the time after my studies. Almost all my student friends from Mainz wanted to do doctoral thesis after completing their courses. This is perfectly normal for this kind of course. Without a doctoral thesis, the chances of employment are virtually zero. Now that I got this far – why shouldn’t I try? I applied at the Max Planck Institute at Frankfurt, but was rejected with the reason that the lift was always broken. Then I had an interview at Boehringer Ingelheim with a better result. I made it plain that I would be supported by my assistant and how I would carry out my work. My openness was obviously met with positive feedback. A woman with physical impairments capable of mastering her university course and diploma thesis must be very competent and assertive, just what is required on the free market. I got the job and had to hurry up to complete my diploma thesis.
My hope to be able to write a theoretical thesis was thrashed by the study regulations for biology. A doctoral thesis in this subject requires practical lab work, and the latter must be documented in the written thesis. However, I was lucky to be greatly support by my employer. A lab assistant who carried out all the practical work upon my instructions was employed especially for me,. In addition, I had my personal assistant who I had organised myself within the employer model, a programme by the German state for employees with impairments. My personal assistants supported me with the practical work in my job, during business travels, and at home. My lab assistant, a well qualified medical and technical assistant carried out the practical lab work required for my job. This was always coordinated between the two of us. This solution was not really unusual for my employer since many scientists have laboratory tasks done by assistants anyway after completing their doctoral theses. I just started this kind of thing a little bit earlier, and learned how to delegate work before completing my doctor’s degree that way.
After I finished my doctoral thesis, I turned my hobby into a job, and assumed employment at the Centre of Self-Determined Life in Mainz. My job there was to give advice to people with impairments looking for assistance. I did this on the basis of my personal experience. I worked in this field for almost seven years, but finally, I returned to the profession for which I was qualified. Thus, I started my job at the Paul-Ehrlich-Institut, where I have been working as a scientist since early 2005.
Of course, I still have assistants, both at home and at work. Meanwhile, I have been employed for 17 years and am therefore financially independent – apart from my assistants. This was only possible because I was given the chances to use and develop my abilities with the help of assistants.

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