Wednesday, October 15, 2003

Who fans: alienated, intelligent and dysfunctional!

This is a story about me, Sara Martinelli, my son Adrian, Ozzie and Relayers.


Friday night at Wholapalooza II, people were coming in and some were putting on the name tags we had distributed. This was good, because there was at least 25 people I hadn't met before and I was worried about keeping up with who's who, who's next, who's on first, etc. I notice a woman with a name tag of Sara and go over to say hello. When Sara RSVP'd, I thought, well that's interesting. I thought she probably hated us after her experience on O&S and Relayers. I was curious about who she was going to turn out to be.

Talking to her was uncomfortable. She seemed a little hostile, which I could understand but it still felt bad. She then gave me her phone number at her hotel in case I wanted to call and keep her posted on things going on on Saturday. The interaction was awkward. I noticed she had trouble making eye contact. She said some things that I just couldn't fit into the flow of the conversation. I talked with Toni and Marie afterwards and we agreed that there seemed to be something odd there. I said that I thought she was just crazy. Typical human way of dealing with something you don't understand, I guess. I decided to myself I would just keep an eye on her. Part of my deal that night was wondering what it would be like to get 70 something Who fans together that had met on the internet and any one of them (especially Seth) could be a complete wild card as far as behavior is concerned.

Towards the end of the night when Barry and Chris were up, I was starting to relax a bit because things were going well. I noticed Sara was really enjoying herself and singing along with everyone. There hadn't been any crazy drunk people screaming at the server or bashing up the Hard Rock so I thought, wow, this thing's actually going to work out. I left to go to the bathroom and just be alone for a minute.

On my way back I noticed this older man with a cane walking around upstairs outside our room. The deal with me is I notice everything nearly all the time. I wondered who he was. There had been one or two of the Hard Rock staff that had come up to listen to the music and I thought well maybe he's just listening to what's going on. I came out again a little while later to get a drink or something. This time on my way back, I saw him sitting outside our room at a table. I went over and invited him inside to listen to the music. He smiled and said, "no, I'm just waiting for my daughter"

I knew his daughter had to be Sara. I got a chill because I knew I was about to have a significant interaction with this guy, and that the mystery of Sara was about to be clarified.

I said "Who's your daughter?"

He says "Sara".

I sit down next to him. "Tell me about Sara."

He kind of laughed. "You've noticed there is something for me to tell?"

"Well, yeah."

So he starts telling me. Sara has Asperger's Syndrome. Do I know what that is?

I do. I've done a huge amount of reading on Autism. Asperger's Syndrome is on the continuum of autistic-related disorders. I have a deep interest in them because of my son. Adrian, as I have often described, is like an extraterrestial that seems to have dropped down from another planet. He experiences the world in his own little unusual way. He has some learning disablities and some other little quirks that have often caused me to think he is bordering on the very functional end of that particular continuum. He is immensely lovable and sweet and con be very frustrating to be around all at the same time. I worry about him. I find myself constantly hoping the world doesn't break his heart.

Asperger's evidences itself primarily as a social disorder. People with it can get fixating on things, don't always have a sense of what's appropriate and what's not, have trouble with eye contact, don't really get the rules of social interaction, etc. They frequently excel at something like music or math. Some people with it can be very high functioning and get by with people thinking they are odd or just eccentric.

As soon as he says it, I just think "of course".

Mr. Martinelli is a United States federal judge. He's a really good guy. We talk for a long time about Asperger's, getting it diagnosed, what it's like to raise a child with problems. Sara is 28. He has driven her down from Massachusetts for the weekend. What a great dad he is. I tell him about us. I say that for a lot of us, this group is like our church, in a way. I tell him we are basically good people and that Sara seems to be really enjoying herself in there. I do not tell him about the specifics of what has come before. I think it would hurt him too much. And me.

We talked for quite a while. I say good bye and walk back inside the doors to our room. Once inside the door and out of Mr. Martinelli's sight, I start weeping. I immediately see Lauri, Cynthia, Joyce, Lauren maybe some others. I am crying because I feel like such an asshole and I feel so incredibly stupid. How could I not have known? How could we have been so mean?? Aren't we fucking Who fans? Who knows more about being outcasts and misfits than us? Everyone is cool and gets it and tries to reassure me that there was no way we could have known. At one point Alan says "No one knows your a dog on the internet", referring to that old New Yorker cartoon which I had up at my desk at work for about 5 years. He's right. The cartoon was one dog talking to another at a desk with a PC monitor and a keyboard. The point being, nobody really knows anything other than what you tell them over the net.

BUT. Here I am someone who considers myself totally "straight but not narrow". I like to think I can welcome "all kinds". One of my favorite expressions is "it takes all kinds". Because, it reminds me that it really does take all different kinds of people to make the world go round. There is no one kind that is the right or perfect way to be. But I had failed at recognizing Sara as someone who required a little more berth than some others.

At this point I went back to Ozzie's little t-shirt booth and had a good cry and talked to him about how crappy I felt. I went back out, and I told a few more people because I wanted to make sure that Sara would now be understood.

On Saturday, I notice Ozzie is hanging out with Sara. Saturday night, I notice Ozzie dancing with Sara. This brings a smile to my face - he has always been good at that kind of thing. One time we were on an Ozzie-dive-vacation in Tobago. I was uncomfortable being the "wealthy tourist" in a county of very poor people. We were snorkeling in a cove one day and there were all these local kids swimming there. I was busy feeling bad about the unfairness of life. Meanwhile, Ozzie goes over to a group of the kids and teaches them how to put on the snorkel and mask and lets them use his to swim under the water. It's clearly the first time they've snorkeled. At the moment I think Ozzie is a genius. I tend to live in my head and fret about life while he has always just lived it. I've gotten better at it over the years.

The good news is that Sara really did seem to have the time of her life at Wholapa II. Upon reflection, I remembered that I wasn't totally an asshole. I welcomed Sara onto Relayers when she wanted to join even though I knew it wouldn't be a popular decision. In the end, I didn't stand up for her and I asked her to try and fit her posts into the flow of things or something like that. She bailed. She seems to have found a home that she likes at The Grid, which makes me happy. The othe good news is that the experience helped me widen my definition of my open mind. Next time I come across someone like Sara, I'll be that much smarter about it.

When we got back, I wasn't sure if this was really my story to tell. But since Sara's not here, I guess it is. Maybe it will help deepen all of our understanding. Thank you to Charles and Jon/Slipkid for the prompting.

Trish

1 comment:

Sara said...

Beautifully written!