'I want to become more and more like Charlie'. The life insights of actress and writer Romana Vrede

Last month, De Arbeiderspers published the novel The noble autist by Romana Peace, based on life with her son Charlie, who has an intellectual disability and autism. Conversation on what she learned from him and other life events. 'Not Charlie is crazy, the world is crazy.'

'Normal' is not normal

'When my son Charlie was dancing in the windowsill as a 2-year-old boy, I shouted, "I want him to be normal!" My coach said then: but this is normal for him. Charlie is now 16. He doesn't talk, but he uses sign language and he is good at making contact and giving love. He cannot write or do maths, but he enjoys helping to cook, listens a lot to music and reads books.

My biggest insight was that at one point I realised: wait a minute, it's not Charlie who is crazy, the world is crazy. That's why I made the performance Who's Afraid of Charlie Stevens? made and the book The noble autist written. We can only look at the world in one way, have a set judgment of what is "normal". How you sit on a chair, how close you can stand to someone, how you make contact and how long you can look someone in the eye - there are rules attached to everything. Our language is also full of them: this is tradition, that's not how it should be, that's not meant to be. This is how we raise our children. Our behaviour is totally learned.

Because of Charlie, I started looking at the world differently. He taught me what real communication is. And how limited we think about intelligence. We have a rigid world, where everyone has to fit in when in fact no one really fits in. The norms of behaviour are fixed, the lines within which we are allowed to colour are close together. I notice this myself; all my life people have been saying to me: you are always so much. You are too much, too busy, too dominant, you take over. I am not a light, superficial type, I am sometimes dark, really dark. Or just too enthusiastic. Because that's not allowed either, being extremely enthusiastic, that also scares people. I always fall outside, my extremes are condemned. I can be more myself on stage than off it; I mainly act when I'm not on stage. This makes me feel lonely. That's really my biggest problem of all: loneliness. And that gets worse rather than less.

My aim is to become more and more like Charlie. Because of his autism, he cannot put on a mask. He is one hundred per cent himself, always and everywhere. With him, contact is real contact, in its purest form. Yes, he behaves like an adolescent and has the same needs as any other boy his age. But for me, he is also an inspiration. Everything I am proud of, I learned from Charlie.'

Everyone is a character

'Acting has taught me to be more tolerant and curious towards others. Less judgmental. I started to listen and watch the other person better. Because to play someone, I have to put myself in their shoes, their ideas and motives. In the recent performance We are here for Robbie I played the youngest daughter's new black girlfriend from a rich, white Hague family. Well, I am black and gay myself, but I find it more interesting to look for what I don't recognise. For instance, I myself am very present and dominant, while my character is observant and not so mouthy.

Acting made me realise that we are in fact all characters. The way you dress, walk, talk, behave says something about what you want to radiate, how you want to come across. They are all choices. And I have found that you can manipulate with that. From the age of 20 to 30, for instance, I looked like a girl, with long hair, make-up and heels. People reacted to me that way: they thought I was beautiful and sexy. Now I have consciously chosen an androgynous look, as neutral as possible. It calms me down. This is the form that suits me best now: a tabula rasa.'

I am not my sex

'From the age of six to fourteen I behaved like a boy, thought I was a boy too. Peeing standing up, catching mice, playing on building sites, hitting on girls. My mother always said: Romana, if someone talks to you, you're not a boy, you're a girl. But she didn't say: stop this boyish behaviour. I didn't have to wear skirts.

Still almost daily I am mistaken for a man. When I was on the metro the other day, a 4-year-old girl looked at me and asked, "Mum, is that a gentleman or a lady?" I am sometimes referred to the gents and I also often experience someone asking me, "Sir, do you know what time it is?" I like most people who try to hide the fact that they have made a mistake or laugh really hard out of embarrassment. Why should I be hurt by it? It would mean that I myself have a stereotypical image of what a woman should be or look like. Frankly, I find just as vehement when someone says, "Madam, do you know what time it is?" Because why do we address someone on what they have between their legs? I actually find that quite impertinent.

These days I find myself in a queer scene, many of my friends and acquaintances play with gender. They identify as gender neutral, or as women one day and men the next. I have come to allow myself that freedom too. I really see the duality of gender as a limitation. I feel one hundred per cent female, even though I may not be a stereotypical woman. In the end, I'm just Romana.'

I may be softer on myself

'I feel my strength is inexhaustible. I can handle anything. This is how I was brought up: there is no reason not to be able to do something. My two brothers, sister and I are all super strong, self-assured and confident. If something doesn't work out, you have to make sure it works out, you don't throw in the towel. It always comes together. Failure is not in my vocabulary - I don't get it, it can't be done. Nor should I. So if something doesn't work out - for instance, a relationship that ends - I get scared and lonely. Then I prefer to crawl away into a corner.

I would like to be kinder, gentler on myself. So that sometimes I can think: that's the way things are sometimes, Romana, that's how life goes. I am learning that. I have had a good therapist for ten years. Because my son Charlie has autism and a mental disability, we had family therapy from birth. Later, I went into therapy for myself. I see it as fitness, as mental maintenance. Just tidying things up. Sometimes I don't speak to my therapist for six months, sometimes we call every week. When I was a guest for the first time at The World Turned Door, I was SO tense. Then she asks questions: what exactly are you afraid of? By naming things, it calms down inside.

I am trying to be more and more honest about my feelings, with myself but also with others. That is an advantage of getting older: I gradually dare to do that more. The other day I went on holiday with a friend and said beforehand that I don't like it when someone immediately starts asking questions at a time when I feel bad. Can I just be with that for a moment? I wouldn't have dared to discuss something like that a few years ago. Then I would have thought: only in your room can you be sad, by yourself.'

Trust breeds confidence

'André and I are looking for a place for our son where he can live full-time. Charlie now lives alternately three days with me in Rotterdam and four days with his father in Driebergen. But it's better for him if he gets a life of his own, because we will also die one day. I haven't reconciled myself to that idea yet. No, no, oh no. It's hell. I want to and at the same time I don't, please don't, because I hate it. It's never cosy in an institution like that, because it can never really be a home because the supervisors don't live there - it's their workplace. That is also the reason why I sometimes go to DWDD Sat: I wanted to make Charlie a BN so that he will be treated well.

But actually that means I think quite negatively about Charlie. I fear that if his father and I are no longer around, no one will be able to love him as much. That he won't make it. As if all those people he has around him only care about him because they are paid to. It's actually very mean of me to assume that Charlie wouldn't be able to bond with anyone. I am also sometimes guilty of something many other parents also do: "Let me do that, honey." Which is effectively saying: because you can't. Indeed, I can't let Charlie loose on the street, because he will get hit by a car. But I can always focus on the things he can do, and I try to do that consciously. That is work in progress. I have to keep saying out loud to myself: have faith in your child. I have to learn to trust, and learn to trust trust. Do you see what I mean? It is with trust like "this fist to this fist": trust breeds trust. I keep trying to imagine Charlie saying to me: do you really think I will let it happen that I have to walk around in a nappy all day? I try to trust him. Charlie is my child, his strength too is inexhaustible. He too gets exactly what he wants.'

It always works out

'I was 16 when I joined the Jehovah's Witnesses through a friend. It was the age when I was running into big life questions, and there they had answers for me. But when I joined at 19^e confessed that I had had sex with a boy, I had to do penance. I was no longer allowed to sit in the front row in church; from now on, I had to sit in the back. I think that's stupid; you should actually bring a black sheep closer to the circle instead of at the edge, because then they only walk further away. And that's also what happened. Since I was no longer allowed to participate anyway, I moved out into the world.

I got a good contact with God during those years in the Jehovah's, and that only improved after my exit. My Bible knowledge was good, so I knew the text: there is no one who knows your heart as well as God, not even yourself. That made me realise: God made me and knows who I am. He knows my heart, and knows that I doubt and search and make mistakes, that I can do mean or stupid things, but He also knows that I am actually just scared or sad. He understands me and has the gentleness that people don't have.

That realisation has given me peace and confidence. I meditate almost every day and talk to the gods, the universe, the wind, the sky, the water, our ancestors. And I always get answers, I am always heard. If the babysitter calls off, five minutes before I have to leave, my sister is just driving down the street. It always works out - I have come to experience that more and more deeply. I don't always get everything the way I "ordered" it, but the way it is right. The stars are on my side.'