You are actively involved in human rights and inclusive policy. Where does that interest come from?

“I am Hungarian and I grew up in the Hungarian part of Romania. I was the member of a national minority, just as I am a minority in the Netherlands now with my background. It is not by chance that I have become an expert on human rights. I work as a self-employed advisor on various projects. For example, I work with municipalities in the Netherlands to set up a local inclusion agenda. When I talk about inclusion, I mean more than physical disabilities or cultural background; I mean the optimal participation of each of us in the society. We all belong to the same society and we all have the right to participate in it. I am also the chairperson of the Dutch Inclusion Association. We meet every month for an online inclusion drink and talk. People with different types of disabilities are in it. We feel safe and at ease during these sessions. There the difference between comfort and discomfort becomes clear: if you’re not used to it, it feels uncomfortable to talk about a topic like disability. That is why I think it is so important that such conversations take place.”

“Before I became self-employed, I was working at a consultancy bureau. There I noticed that I was labelled: I was hired because a quota had to be met for a number of people with disabilities. I did not get the chance to be myself and show my talents, so after one year I started as self-employed advisor. Now I am back to my own profession, human rights.”

What kind of world do you work on as a professional?

“I want to work on a world in which we feel equal to each other. One’s environment plays an important role in experiencing that equality. I am not only referring to people in you direct environment, but to society as a whole: when others treat you as an equal, you can more easily accept and deal with your condition. I am trying to make people aware of this: I also belong to this society. If participation is made possible for everyone in all areas of life, we will have an inclusive society. ”

How do you do this in your personal life?

“Five years ago I was diagnosed with a very rare chronic disease, which made me less self-reliant. In the beginning I was not ready to use a wheelchair. People perceive an assistive device as a sign of weakness. You are not self-reliant, and therefore weaker than the rest. However, I have learned: my freedom of movement is more important than what others think about me. As a result, I slowly gathered the courage to purchase an assistive device. I had to get used to the idea. Getting a chronic disease is not your choice. But how you deal with it is up to you. One’s environment plays also an important role in how you can cope with your situation. My husband, I call him my blond prince, has been very supportive. ”

Foto Andrea Naphegyi b
Andrea Naphegyi

“I try to stay positive, instead of having high expectations of myself. Acceptance is the key to being able to get along with yourself and make other people feel comfortable as well. You can ask me any question, I am open for it. This is what I would like to achieve: that people can sit back and have a relaxed conversation. That starts with acceptance on the one side and awareness on the other.”

How do you notice people’s discomfort when they talk to you?

“I often hear children making comments, for example about my three-wheeled bicycle. Adults are more cautious to say it out loud, but I can see them thinking: she is weird. ”
“In our society we have all kinds of norms about who to be and what to do to have a ‘happy life’: a wonderful career, achievements, hobbies, sport activities, multiple holidays per year, et cetera. A disability is not part of that: according to those norms having a disability and being happy exclude each other. When people get to know me, they say: you are a courageous fighter. But I don’t see myself that way. I have no disabilities, my environment disables me. If all public and private places were accessible for me as a wheelchair user, then suddenly I would no longer have a disability.”

What does the world need now to reconnect with each other?

“Loneliness is a major social problem these days. There is a need for connection with each other. To be able to make that connection, openness is needed and the will to spend quality time with someone else. This openness must come from two sides: from people with and people without disabilities. Fortunately, the time will come when we can also meet offline.”

“During this corona crisis, people notice what a disability is: everyone is limited in their freedom of movement now, in education, the labour market, and so on. Now they notice: that’s the way it is to not be able to do what you would like to. I hope this crisis brings us something. And that we start to use a different word instead of ‘handicap’ or ‘disability’. These words actually have a negative connotation. I prefer ‘people using assistive devices’. I use a wheelchair and someone else maybe glasses.”

Despite a feeling of discomfort, how can we still enter into a conversation?

“People with a physical disability are often labelled in our society. If you want to get rid of that, you have to talk about it. This is how you work on awareness. And with awareness raising you work on change. I also think that equality is very important, if you feel equal, your discomfort will disappear by itself. As long as you don’t approach someone as a pathetic person, because you fill in something for the other: ‘What would that person’s life be like?’ You think that you show empathy, but you start to fill in for someone else, and that leads to a feeling of discomfort.”

“You have to think carefully about what causes your feeling of discomfort. It is important to make some kind of self-analysis: where does this feeling come from? If you can answer that, you will be able to deal with it more easily. I can feel it whether you are interested in me and approach me with respect: I can see that in your eyes, your non-verbal communication and feel your energy. If you appreciate me instead of considering me pitiful, you can ask me any question because I feel safe.”

Conversations for change

What is your advice to readers who sometimes prefer to avoid difficult conversations themselves?

“Look at the person and not at their assistive device. What is the difference between you and a person in a wheelchair? Only the means of transport you use. Nothing else. You are both human. People often do not know what to do: should you or should you not try to help someone? Offering help in everyday life is only good. It is also good for our need for connection. Just come to me with a smile: ‘Is there anything I can do for you?’ Then it is a win-win situation, we can help each other move forward. It is not a me and you, us and them situation: we all belong to the same society, living for each other and with each other. I would say: dare to ask!”

Do you want to read this article in Dutch? Go to this webpage.