A Real Eye-Opener

My name is William (not my real name) and I use a device to communicate. When I was young, I lived with my mother in a small community. I communicated with my family using eye contact and gestures. I didn’t get any sex education from my family and I didn’t go to school so I didn’t get it there either. To make matters worse, my mother would change the channel every time something about sex came on the TV. She would say “we don’t need to see this”. Maybe she didn’t want to see that or maybe she didn’t want me to see that. I don’t know but it was obvious that she was uncomfortable. She did that for the whole time that I lived with her, until I was 35 years old.

When I was about 10 years old I started to notice my body changing. New things like erections and wet dreams and other normal parts of puberty. It was never explained so I felt embarrassed about it and tried to hide it. All boys probably feel that but they would get to talk to someone about it. I wish someone had explained it.

I didn’t hear about sex until I moved to a city in 1984 after my mother died. Then I heard about it on TV and in movies and from just thinking about it and figuring it out. I started to hear about AIDS on TV too. I didn’t understand it. All I knew was that it had something to do with needles. I heard that people who are gay and people who are drug addicts got it. I didn’t think I had to worry about it. A little while after I moved to Toronto I saw on TV that people can get AIDS from a blood transfusion. I had never heard this before. I had got a blood transfusion in 1978. I didn’t know what to think. I was shocked, scared, and worried. I was using a picture symbol book to communicate and it had no words about sex or AIDS in it. When I found out about sex I wanted to ask someone about it but there was no one to ask. I worried about what they would think of me. I thought they would think I was crazy if I asked. I got a voice output device in 1996 but it was not programmed with any words about sex or AIDS either. I never forgot about it. I felt worried each time I heard about AIDS on TV. If there had been a person to ask I would have found a way to ask.

When I was told about Speak Up I thought it was a good idea and wanted to be in it. In the men’s sex education we learned about HIV/AIDS. I already knew some of it but that was when I found out there was a test for HIV. That was a real eye-opener. I didn’t know there was a blood test. I thought the only way to know was if you got sick. I was waiting to get sick. I asked Speak Up for the test. Someone from Speak Up came with me to the nurse to help me communicate with her. I got new pictures and words about sex from Speak Up but I didn’t know how to find and use those words yet. I was nervous. It takes time to learn and practice new words. It was good to have someone with me. The nurse asked me why I thought I might have it and explained the test. The results would come in two weeks. As soon as I got the test done it was like a weight was lifted off my shoulders. I felt better already. The nurse told me that people usually get sick after they have HIV for 10 years. I had my blood transfusion 25 years before and I wasn’t sick yet, so I knew then that I probably didn’t have it. There are no words to describe how happy I was when they told me two weeks later that I did not have HIV. I got lucky. Some people get HIV and some people don’t.

I wish I didn’t have to go through that. I don’t know why my family didn’t talk about sex. I wish I had been taught about women and having a girlfriend, and being a parent. I think families should talk to their kids with disabilities about sex, bodies, HIV/AIDS, relationships, and love.

Note from the Speak Up Project: HIV is the virus that causes AIDS. AIDS is not a gay disease or a drug user disease… anyone can get AIDS. If you think you might be at risk for HIV, contact a clinic in your area. The test is free and can be done anonymously. HIV can be prevented by using condoms if you have sex, and clean needles if you use injections. Since 1985 all blood for transfusions is screened for HIV.