Marnix's Story
Marnix (31) has a MSc in Chemistry and was working as a Technical Education Assistant and is now working in different volunteer associations. He was born with albinism and has about 10-15% vision. He went through most of his studies by listening to the lecturers because looking at a blackboard was not really possible.
Growing up with a disability, he had to really push himself a lot to fit the norm, for instance in terms of his studies. Even during his postgraduate studies and when he was working, he felt that society was always telling him to put his 100% in everything. People never accepted that his 50% or 80% that he was giving for the day could actually be his 100%. To fit into that expectation, he always pushed himself to do more and to work harder which led to a burnout. He had been trying for too long to mask reality. Meeting the societal expectations was not okay for him and maybe not for anyone else. A fulltime job would not be a good way forward. He now does a lot of volunteer work which keeps him following a routine and it also helps him to feel useful. On Mondays, he serves coffee and tea for elderly people. He also meets weekly for Wool for Warmth where he crochets hats for homeless people. Furthermore, he gives speeches and workshops around gender diversity and inclusion to high school students.
Marnix would wish people to see the nuance between being completely disabled and completely 'able bodied' - people either expect you to not be able to function or to function like any other human being. He had been raised with the idea that he should try to be as normal as possible, so he masked both his physical and mental disabilities to the point where people would often forget how disabled he actually was and did not see the challenges he faced on a day to day basis. It would have helped if he could have just been. As a kid he was constantly pushed inside the box of being disabled to the point where there was no other outcome then for him to rebel against that he simply had to act and be normal He would have grown up to be much more accepting of his own disabilities if he had just been able to explore being himself in a safe environment.
Deep down and although it is still a struggle, Marnix knows he is doing a lot of good things, for instance in the places where he works as a volunteer. Marnix has always wanted to be an example for other people with disabilities and tell them they could do so much more than people would tell them but he now also knows that because you can, this would not mean you have to. You are already the best version of yourself.
Inclusion means that anyone is part of any system, no questions asked. There is place for anyone and no one should ever feel like 'the odd one out’.
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© Photographs taken by Rosella Fennis
