World AIDS Day

I grew up in a world most people will never see.

My childhood was one where I knew about chest tubes, how to use syringes, running jokes about biohazard signs. I learned what sex was at the same time that I learned what death was. I wore plastic gloves more often than any child did in my grade level.

My father had AIDS. He died in December of 1993.

I usually do a heartfelt post about how I miss him, and about what the experience was like to live with it. But today I’m turning the tables. I’m making this a Q&A. You – the readers, ask the questions. I, the writer, will answer them. The only thing I ask is that you keep it respectful – even 19 years later, there are scars on my heart that are still raw. But I miss teaching, and I miss carrying on my father’s legacy – he took me with him when he taught AIDS prevention classes, and I have done that work since then.

Today I am a (mostly) open book. Ask away, I’ll take questions until end of day Saturday.

 

UPDATE: I’ll be adding stories as I think of them. Continue asking questions – since people have been shy, I’ll extend the deadline on queries – because this is seriously about answering YOUR questions. Here’s a short anecdote from the annals of my AIDS infected childhood:

“FUCK AIDS” I said. I think I was around seven years old, I may have been younger, I may have been older. I can’t remember the exact context, but I know I was angry about my father being sick. My mother had explained swear words to me in the recent past, and she had told me that they were adult and angry words, and that I could only use them in the appropriate context. So I did. I remember this: I didn’t get punished, because I’d used the right word, in the right context.

I swore.

Northwest AIDS Walk 1991

Northwest AIDS Walk 1991

Advertisements

9 Comments

Filed under Uncategorized

9 responses to “World AIDS Day

  1. Thank you for sharing. I remember the stigma that surrounded HIV/AIDS, particularly in the 1980s and 1990s, to the point that it would have been rare for someone to disclose much information about it. You mention that your father took you to his AIDS prevention classes, which suggests that you have always been somewhat open with people about your father’s diagnosis. Is that true? Were there times when you felt you couldn’t tell others about it?

    Finally, I wanted to ask about your thoughts on efforts to cut funding for HIV/AIDS research. Many perceive it has an illness that is no longer a death sentence and so less deserving of research in comparison to other conditions. Do you agree or disagree with that perspective?

    • There were certainly times when I wasn’t comfortable. At school, for example, I was open about the fact that my dad was sick, and what with. I seem to recall at least one classmates parents having an issue, and being told by at least one or two classmates that I was not supposed to hug them or they’d get sick. I actually experienced more discrimination from my classmates as I got into middle or high school. Classmates told me my father was in hell, or would tell me that he deserved to die.

      As for the efforts to cut research funding – I think it’s shameful. It is still a disease, and people will still eventually die from it. They won’t die from old age – without their medications many will die from complications. I wanted to be at the ActUp protest in D.C. this last week, but transportation did not allow for it. AIDS is still a death sentence, it’s just a longer sentence with better medication and a less urgent perspective from the public.

      • Thanks for your response. It’s sad to think about all of the sweet (or mostly sweet) children in my girls’ pre-K class and to know that some of them (hopefully not my children!) will become bullies and will treat others badly in middle school and high school (if not before). It can be a difficult time even without rampant misunderstanding about a medical condition like HIV/AIDS behind the cruelty.

        I hear you on the issue of research funding.

      • To be honest, I don’t think AIDS or any other disease doesn’t hold a death sentence unless we have a cure. We don’t have a cure yet.

  2. Jo Jo Stiletto

    How is this experience represented in the art that you make? Or, is it something you haven’t yet explored?

    • I’ve done one piece where I performed in honor of my dad – but it isn’t something I’ve yet really gone into depth with, I’d like to in the future. But in terms of inspiration – he’s why I dance. He taught me how to draw, how to paint, how to see the world as an artist – so in some ways, the fact that I’m a creative artist at all is honoring him.

  3. Janallama

    If your dad got a free pass for the day, and was here, is there anything you’d still want to ask him? I ask because as a child we might ask everything we’d want to ask *at that level* and now that you are all grown, and married, is there anything you wish you could ask him now?

    • If he got a free pass, I’d ask about him.

      I’d learn as much as I could about who he was and what he liked and his relationships with the people I know and love now. I’d ask a lot of questions about him, because that’s what you miss when a parent dies and you’re that young. I’d ask him to tell me about his artwork, and his writing – I’d find out if he really did speak and read as much German as I think he did as evidenced by the letters I have in his papers. I’d soak up all 24 hours and learn as much as I could.

  4. Dear sweet Elsa,
    You had a pin the read FUCK AIDS and when your father died you wanted to wear it and I supported you in that. The conversation we had about swear words was that swearing as a child had consequence. I cautioned you that as a child if you used certain words in public or at school that you could very well end up with a bar of soap in your mouth , if I was not around to stand up for you 😉

    I still believe that words are not bad , it is the intention behind them that are hurtful. Yes, the stigma of AIDS in the 80’s is something we battled with as a family . Your father an I chose not to hide but to advocate and educate. Some members of our family were displeased when you and your father were on the cover of the Seattle Times handing out condoms at a Pride Parade when you were 5 or 6 . You often went with him when he went and spoke about living with AIDS to the local school and would participate in the Q & A’s .Your father would be very pleases that you continue to be outspoken and breaking the silence.

    Silence = Death

    Love to you

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s