Steven Dijkers

Welcome to Living Labels, where we look past preconceptions and listen to the human story behind the labels.

In this collection of personal stories, interviewees talk about the stereotypes they encounter in everyday life. Others are quick to attach labels to them, but often forget that a person cannot be summarized in one word. Behind the label ‘disability’ is Steven Dijkers, assistant administrative officer at UWV. Although he notices that society is becoming better equipped for people with disabilities, he still sometimes finds himself in unpleasant situations.

No, I have no problem with the word ‘limited’ or ‘disabled’. I don’t care what you call me. If someone means it negatively, I just let it slide. I just think: their opinion doesn’t matter anyway. Sometimes you just have to let people prattle on. They don’t know any better.

Why is your label ‘disability’?

I have a physical and partially mental disability. The official term for my condition is hereditary motor and sensory neuropathy (HMSN), a muscle disease that causes your muscle strength to decline. I myself have a mild version. My joints are a bit smoother than anyone else’s and I am a bit more easily tired. You shouldn’t give me physically demanding work, for example. In order to cope well with my illness, though, I am as active as possible. In my youth, for instance, I was in judo. My parents had done this as a precaution to counteract the sagging of my muscles. And also a bit so I could stand up for myself. It just wasn’t quite my sport. There were boys there who were two heads taller than me, I couldn’t knock them down.

Mentally, I process things a bit slower than others. I have more trouble processing information.

For example, if a difficult subject comes up and I am with my wife, she takes the floor. Then I listen in and complement where necessary.

My wife and I have been together since March 2015. We met through Facebook. She participated in a dating show on BNNVARA, now called The Dateables. In the run-up to that, she was introduced on that programme’s Facebook page. She looked nice, so I responded to that message then. Later, I contacted her privately and we met up. In 2018, we got married and now we live in Hengelo with our two sons.

My wife is wheelchair-bound as she has Cerebral Palsy. Because of muscle spasms, she speaks a bit slower and cannot do certain physical things, like changing the little one’s nappies or lifting him to burp. But then again, those are things I take on.

She sometimes finds herself in unpleasant situations where she faces prejudice. People still sometimes look back as we walk by and in restaurants, for example, the staff are more likely to address me than my wife. Once, when we were eating out, the waiter asked me if they could ‘get madam something to drink’. As if she wasn’t there. Then I immediately have my answer ready, because they should ask her, not me. It can make her angry when it happens. And I get that, because she is incredibly smart and independent. But we have become used to this kind of prejudice by now. Maybe we’ve grown over it a bit.

You cannot immediately see that I have a disability from looking at me, which is why I get fewer questions about it and face less prejudice than my wife.

People think you can always tell a disability from someone, but that’s a weird way of thinking, right? Because what does a disabled person look like? Because there are so many types of disabilities: physical, mental, visual. The list is long and every person is different. It’s not something that bothers me very much, but I would still like this to change. Actually, that’s what I hear most often, that you can’t see my disability on me. From within myself, I don’t talk about it constantly either. When people ask questions, I am as open as possible. I still get the strangest comments about my origin, because I am half-Indian.

To me, it is actually quite normal for someone to be in a wheelchair or have a disability. Many of my friends are physically or mentally disabled. I was also in special education from primary school to vmbo. As a result, I grew up in school with many different classmates, including children who had autism or children who were in wheelchairs. So it was just how it was.

In special education, I had a very good time. I always had friends and was not bullied. At special secondary school, it soon became clear that I could move on to vocational education. The only problem was that I didn’t know exactly what I wanted to become. For a very long time, I wanted to work in the tourism sector, at a travel agency or as a tour guide. But on my mother’s advice, I didn’t do that. She has worked in that sector herself and said it was a small world with few vacancies. With an education in administration I would have a better job opportunity, she said. Besides, I was good at maths and accounting, so after high school I chose an mbo course in accounting at a public school.

The mbo was a culture shock. Until then, I had lived in the protected world of special education, in small classes and with individual attention. Far from the angry outside world. But the mbo was very large-scale. You had to fend for yourself. In the first two years that went well, but then I fell into a slump. Mentally, I wasn’t really coached either. Why can’t I keep up?”, I often thought. At the time, I talked to my parents a lot about it. The study level turned out to be just a bit too high for me. I continued the same studies, but at a lower level. And then the grades went well again.

After secondary school, a job coach helped me look for a job and I worked as an administrative assistant in ICT and in construction. But often the match was not there. Especially in the construction sector, my character was not in line with that of my colleagues. They often had a big mouth and a small heart, while with me it was the other way around.

The cooperation with the job coach didn’t go very well either, so at some point it stopped. That was mainly down to me. I was lax, maybe not mature enough. When I subsequently became unemployed, I was forced to quickly become self-employed. At that time, I knocked on UWV’s door to ask if they could help me get a paid job. There, I met an employment expert with whom I got along very well. She called me one day that she could offer me a job at UWV. After an interview, I started working here.

I am truly happy to be working here now. UWV is really a very open company, where colleagues are thinking with me. I can always rely on my supervisors, for example if something goes wrong or if I want to express myself. And they take my disability into account, for example by explaining my tasks to me step by step. They pay a lot of personal attention to me here.

I wish it was like this with all employers, but it still happens too often that people are judged in advance on their disability, or their skin colour, or their first name.

While these people have so much to offer. I think it is an old-fashioned attitude and that generations are going to come when people start seeing each other more as equals. I am convinced of that. Only it’s going to take some time until it’s more about characteristics like strength, talent and character.

But in general, society is better equipped for people with disabilities these days. For instance, my wife and I notice that there are more and more wheelchair-friendly places. We see more and more disabled toilets, rooms are ground-level and easily accessible. When we went to Madurodam with the family, it was very manageable there.

I also have a season ticket for Vitesse and go to every home game at the Gelredome. I think the disabled seats there are well arranged. I understood from friends that it was less so in the ArenA, for example. There, they were dropped behind a goal and couldn’t see much. There are also clubs where everyone who is wheelchair-bound is put together. Then supporters from both teams sit together, which is not so nice.

If you ask me, we will come closer to a more equal society if we show more interest in each other and are more open with each other. People with disabilities would dare to speak up and stand up for themselves more often. People without disabilities could ask more about what their interlocutor needs in order to be themselves. This can be difficult. It is not always easy to be open about your disability. Some of my friends don’t like to talk about their disabilities. We know each other’s thresholds, so we don’t talk about it either. The important thing is not to push through if someone is not open to that conversation. But people without disabilities shouldn’t be afraid to dare to ask questions either.

Are you happy with life as it is now?

Yes, very happy. Some people think that having a disability is all doom and gloom, but it is not. That’s not to say that everything is rosy and every now and then it’s okay to say that your disability is no fun. But for the most part, like others, I am just a homebody type.

For instance, I really enjoy going to concerts. And maybe I want to go and see more of the world. Kind of what the plan was when I was thinking about working for a travel agency. Now I discover more of the world around me thanks to my car. With it, I can go wherever I want, without depending on others.

Honestly, I think I have a boring life. When I read the stories of the other people interviewed for this, I sometimes think what has happened to them is very intense. Actually, when I think about it, I haven’t experienced that much. I never fell into depression or became severely gloomy.

Over the years, however, I have changed my outlook on life. A teacher used to call me ‘the quiet enjoyer’, an inconspicuous boy who always sat quietly in class. But I am no longer that. I have become much more open, independent, mature and articulate.