| Astra Milberg |
To have Down syndrome
National Post writer Allen Abel spoke to 12 people who have had remarkable experiences.
Today, in the final part of the series, we meet Astra Milberg, 28, of Toronto, Canada
Astra is involved in a number of community organizations and is the recipient of the Lieutenant-Governor of Ontario's Volunteer Action Award.
Here is what Astra has to say about her life
(Astra has Down syndrome)
I hear people say, "I'd rather be dead than like that."
Whoever said that, he has his own problems. What I have, I can't get rid of it.
I guess I'm not the only person with it. Me, I'm proud. Look at the things I am doing.
Others with Down syndrome, they are still hidden away. They don't want to talk about "the label."
But I figure I'm pretty much here to stay. As long as I'm around, it's not going to go away.
I know it's not curable. I wish it was. I actually heard, on one of the tapes I have, a man mentioning a pill you could take to make this go away.
It would be nice if there was a pill like that, to become like some other people. If I didn't have Down syndrome, it would be different; I would know what reality is.
To me, a dream is just a dream. When I dream, I go after cloud nine, but I'm just daydreaming and it's not reality. I wake up from all my dreams. Most of those dreams don't come true.
My moods are up and down. One moment, I'm happy; the next moment, I'm upset. Sometimes the sun comes out, and sometimes it hides behind a cloud. That's how I am. More or less, I go with the moods of the weather.
What makes me happy is being a friend to a person. I know a girl -- everybody else wasn't nice to her because she was a drug addict and an alcoholic. But a person like that needs friends. I don't know how much she remembers of our friendship, but I remember it, and it makes me happy.
I don't have any physical pain. I know I am short -- that I do admit! But being short is actually nice -- I can get myself out of trouble without being seen!
Sometimes, it is hard for me to concentrate. When it comes to life and reality and the way to live, sometimes I get confused. But if I get in trouble, I know how to get help. I wouldn't say I get dizzy, but sometimes I get confused about life and its difficulties. If I have a home I can get back to, I can do things outside.
Sometimes I get lost, and sometimes I can orient myself and not get lost. When I was younger, I used to get lost a lot and the police would bring me back. At least I know that they are friends -- it's not like they put me in handcuffs! They are very friendly, even to people with disabilities. I could see myself working in a police station.
I'm not afraid of going on the subway. I'm just afraid I'll get pushed in the pit! And I'm not afraid of noise, unless it's a gunshot! Thunder and lightning, I'm not afraid of -- I like them.
I am pretty well literate. Writing, I do every night in my diary. Everybody says I should become a novelist, the way I write. But what I write is just between me and my Mom.
I was born in Toronto. I'm a legal Canadian with the right to vote. I like that. Most people with disabilities don't vote.
I don't exercise very much. I used to exercise, a long time ago. I did run when I was a child. Now, I walk. Walk and talk -- there you go!
I don't watch a lot of TV. I watch the rough and tough ones: Xena, Warrior Princess and Walker, Texas Ranger. (Don't put that down! What will the people who know me think!)
When I look at other people with Down syndrome, I see some people with speech impairment. Some have fears that are in their heads but the fears are not reality. I pick up on that.
It's hard to make something positive out of so many negatives. Sometimes people say that having Down syndrome is cool. How cool, I don't know. Some people say I have special talents. Sometimes, they are surprised by what I actually know. I do have a sense of humour -- not everyone has that.
Looking beyond people with disabilities, and watching those people do things, I think, "I can do some of the stuff that they do." Most people have some kind of disability. They get hurt in many ways, too. But it's not the same as having Down syndrome.
Everybody says that I need a soul-mate, but getting a boyfriend is hard. I had a few recent ones who said that they loved, but they actually don't.
Now, I have new ones, but I wonder, will they be like the ones before? When you have a recent breakup that happens, a person loses the will to love.
Some people know about love, they know that they will love again. But, it's hard. I can get guys' attention, but not the ones I want.
I get lonely sometimes. I know that people say that you're never really alone -- that's God they're talking about. I go to church, we're Christian.
I pray for the family I used to have when they were a larger group -- my grandmother, my aunt. I pray for myself sometimes. For myself, I pray for peace, love.
Once, when I was working at the Bob Rumball camp, I fell asleep to the sounds the deaf were making, and it sounded like music. That night, I saw the light of Heaven. It was just a bright light -- no face, nothing -- just peace. I wrote that down in my diary so I can keep the feeling with me.
Some people say that babies with Down syndrome have beautiful eyes. Not all. But some of us do.
Astra Milberg,
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