anne: “I was born with the 22q11 deletion syndrome. This means that a piece of information is missing on the 22nd chromosome. As a result, I suffer from depression and anxiety, and stimuli such as sound are amplified for me. I need clarity and structure and my energy level fluctuates quite a bit. For example, on a good day I go swimming, on a bad day I can’t even go to the dentist appointment. One activity per day is the limit, but I am trying to build up to that.
“That is one of the reasons why I do not have paid work. I trained as a secretarial employee level 2, but I usually failed in jobs after a few months because communication did not go well.
“I need clear instructions and colleagues did not understand that. Maybe I didn’t explain it well, because I didn’t want to be different from others.”
Diploma
“I wasn’t diagnosed until I was 12. People sometimes realized that there was something wrong with me, but they didn’t know what. It was a long and frustrating process for me to come to terms with my disability.
“I have been receiving Wajong benefits since 2006, while I always wanted to earn my own money. I tried everything, even the sheltered workshop, but that didn’t work either. I do not have an intellectual disability, I can express myself very well and have a diploma. They asked if I could count…
“I have been working as a volunteer in the library one day a week for two years now. That’s going well. I can be myself there, it’s a safe place. I tidy up books, do cleaning work, unload the dishwasher – things that the other employees don’t get to do. There is a lot of understanding and appreciation for me there and that motivates me to continue.
“I also go to the drop-in once a week to meet people. Sometimes I have a chat, but often I sit at a table and draw, because a group provides a lot of stimulation. Although I have been coming out of my shell lately. I talk very easily at home, like now with you, but there are no incentives here, and besides, I have a good day in terms of energy. People often overestimate me.”
World of Warcraft
“I come from a family with highly educated people. For my parents it was also a search for what was wrong with me. I saw a youth psychiatrist who helped me get the best out of myself. I was bullied a lot at school. Ultimately, I ended up in special education, at a school for children with learning and behavioral problems – which I did not have.
“It wasn’t until I left school that I had behavioral problems, I had become very recalcitrant. I also went to a school for long-term ill children, but that wasn’t me either. As a teenager I was very depressed, I had no interest in life anymore. Still, I started training in secretarial work because I really wanted to show what I could do. Later I also completed an MBO-3 training as an activity supervisor for elderly people with dementia. But I was too slow for that too. They found me a client themselves.
“I’m alone a lot, but I have a lot of contacts online because I like to game. I play often World of Warcraftkilling monsters, so to speak… There are also events like that, but that would provide too much incentive.
“The corona period was not difficult for me at all, I am alone a lot. It was a period to relax, I could celebrate my birthday on my own, nothing was expected of me. You could say that society feels to me like a train that is moving very fast and that I cannot keep up with.”
Winter jacket
“Twice a year I receive a call from the benefits agency asking whether I am already capable of a reintegration program. And again and again I tell my whole story: that I am still the same Anne who sits at home and does not receive benefits because of sweaty feet. I would also have preferred to have a career and a family and participate in society.
“I can make a reasonable living on my benefits, but nothing should go wrong. Last month I needed a new winter coat, but there wasn’t enough money left for groceries. Something that is very normal for others, for example having lunch with someone, is not possible.
“I haven’t been on holiday in ten years. Sometimes I go to Texel with my parents for a few days, because I find traveling alone difficult and it doesn’t always work out. The fact that you are still dependent on your parents feels very ambiguous at the age of 41.
“I love writing. On Joop, the opinion website of BNNVARA, I write pieces about, for example, the Wajong Act and the Harmonization Act. This way I can write about things that bother me and I can stand up for people with disabilities.
“I started thinking about the future when a friend of mine, who has the same syndrome, recently had euthanasia due to her suffering. Her death has stimulated me to draw more attention to the 22q11 deletion syndrome. This way I can still contribute to society.”