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Losing your appetite
by Nicky De Jong
Issue 5
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I never really realized that my brothers were different until I was around nine. I had a friend over from school and everything was fine, we were just playing and then my brother came home for the weekend. She saw him, immediately wanted to go home and, the next week at school, nobody wanted to play with me anymore. That incident made me realize that things weren’t as normal as I thought and I started to feel ashamed of my brothers; I actually started blaming them for many things.

Later, when I moved to the secondary school, I was so happy because I didn’t know many of the other pupils so they didn’t know anything about my brothers. When people asked me if I had any siblings, the answer was always, ‘yes two brothers’; I would never give any further details. I would only invite people over to my house when I knew for sure my brothers weren’t home.

A few years ago, I got an opportunity to work in the USA with mentally disabled adults for over three years. In that organization I had many of the same experiences that I had already from home but somehow I became more aware of it. Going anywhere with people who have mental disabilities is interesting in the sense that you come across situations you never dreamt of, both good and bad.

One of the memories that I will never forget is when we were out for dinner once and I had to go outside to get something from the van. A woman followed me outside, came up to me and said, “Thanks, you just made me lose my appetite. Why the fuck did you bring them here?”

I could not answer that woman. I just stood there wondering if she had really said what I had just heard. Generally, when we went out for a meal, restaurants would put us in the furthest corner of the room or, if we were lucky enough, we would get a whole room for ourselves - special treatment and we were not even famous.

People never sat near us or got on the same elevator, which was fine for me, at least. I always knew that we didn’t have to stand, queue and we had all the space for only us. We never had to wait in line in theme parks, since there was always someone who made sure we could get on as soon as possible. Nobody wanted to share the ride with us, so we got our own private rides: how many people can boast that?

You almost get a shock when people decide to talk to you. When out with one of my clients, somebody would come to start a conversation about the client but never asked my client anything, they just ignored the fact that he was there understanding everything of the conversation. Usually, when people came over to talk, they were all like, “Oh I respect you so much for what you do.” If I had a penny for every time I heard that, I would be a penny short of a million.

But what do they mean by this ‘respect’? Is respect built upon what kind of job we do? I think everybody can work with mentally disabled people, since it’s just a case of willing and wanting to do it because it’s nothing special. What I like working with these clients is that they are pure and real. No false emotions, what you see are what you get.

Some of these clients I will never forget, some of them thought a lot of me. I went on rollercoaster rides with someone who was crying all the time, I thought he didn’t like it but he actually wanted more. On a bus from Washington to New York City, we were singing along to The Beatles greatest hits; believe me, after that you don’t want to hear The Beatles ever again, and then we were once pulled over by some cops, while we were singing along to a song called “NYC cops, they aren’t too smart” - guess who kept singing?

Two days before my birthday one of the clients came up to me and said, “Don’t tell anyone but on her birthday we are going to have a party,” then looked at me and whispered, “Don’t tell anyone I said it. Say it was your mama who told you.” A client proposed to me a couple of times a day, then his best friend became jealous, so they got into a fight, made up and decided to share me.

We got lost on the way to a client’s home, who said he didn’t know where he lived. It was getting late so we decided that we were going somewhere to eat. After we found his home, he thanked us for the meal and we found out that he knew exactly where he lived, he just wanted to go to McDonalds.

People with mental disabilities don’t have the master brains and that again depends upon their disability, but some of them understand a great deal of what ‘normal’ people say around them. It hurts them when they see the reactions and responses of the people around them. It’s just as my brother always says, “I wish I had your brains, so I would be normal too.”

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