Friday, November 19, 2010


When my father was dying, and in a state of semi - cogency, that is to say, he spoke in surreal sentences that had very little sense of who he was in the here and now, but which had everything to do with the truth, said, when I asked about Alan, "Alan is everywhere."

If you'd known my father you'd have been amazed at that pronouncement. Throughout his life, he denied Alan's existence. He would be at an event, like an award ceremony, called the Alan Richard Hamovitch award ceremony, and wouldn't say that yes, he knew Alan. (!) I was at his side when this happened and was stunned by the silence on this very important person in his life.

Alan was his son -- and my only sibling. And Alan is what used to be called profoundly retarded. I'm honestly not sure what the PC expression for Alan's "problem" is. Intellectually challenged? A man with autism? A man with developmental disabilities (no, that's not used any more)

I don't mind if someone were to call him retarded. It really is a case of a rose smelling as sweet It don't matter. Alan's disabilities trump any concern of mine for what he's called. Alan is incapable of speaking, understanding anything abstract, holding a job, having a relationship, counting change....

Well, how do I know, if he doesn't speak? Truth is, I don't. I've been uneasy this past many years, wondering how much he might understand if someone were to talk with him, take him to places he loves, play him music that calms him down and makes a smile play on his face. Uneasy because he lives in a place that doesn't give him the things he loves to do. But then, I can't be too hard on them. I don't ask often enough, I don't think, 'what should I be doing this weekend?' I'm really ashamed to say that I don't visit him nearly enough.

So this Sunday, I'm going to treat him to everything I know that delights him, because it's his birthday. I've never celebrated his birthday with him. On Alan's 60th, I'm doing all of it. Inviting some cousins, his Service Coordinator, without whom I don't know what I'd do, Al, of course, and we're going out for brunch at a swanky restaurant in downtown Nyack. We're going to play Motown and the Beatles and Sam Cooke on our way over. (I know he's my brother when I notice him grow quiet and give these musicians his rapt attention.) And then we're going to pig out. Another way I know we're related? Alan loves to eat out. I mean, he gets so overjoyed, he will sometimes refuse to leave a place. Really! I once had to call for help. What's wrong, they said at his house. We're at an Indian restaurant, we're done eating, and he won't get up. It was like calling 911. We'll be right over, they said.

The noises Alan makes aren't those that you hear in an English sentence. They're made with different parts of the throat and mouth. And they're rich, they have timber. As well as clicks and smacks, and a fabulous range within a matter of a second. It can be startling if you're not expecting it, which is why we hardly ever -- no never -- took Alan out to eat when he was growing up. And I have to be honest, I'm a little uneasy. This is a really nice place. I don't think these glissandos of excitement will be ignored, which is what I want. The best place for ignoring Alan is Starbucks. I wanted to kiss the woman at the table next to ours when she sat down, drank her drink, and pulled out school work. You are amazing! I wanted to shout. I should be hardened, but I tense up, when people turn around in their chairs to look at us. I hate the feelings I assume they're experiencing -- like pity, or even support. Just. Don't. Look. (this is partly my problem. I know)

Saw a film at the Margaret Mead Film Festival last Sunday called "In the Garden of Sounds," about an artist, a sound artist, named Wolfgang Fasser, who devotes himself to people like my brother. Using instruments that he made or designed, as well as recorded forest sounds and bird calls, that he's gathered on his tromps into the countryside (he's completely blind, btw), he transforms the lives of these boys and girls -- none of whom, except one, has the ability to speak. These kids adore Wolfgang.

I think Alan would love Wolfgang too, who like Alan, is supremely gentle, and kind, and unlike almost anyone I know, is incredibly full of playfulness. He's devised a massage table of sorts, that's strung like a harp (underneath) and a wall of different sized cymbals. HIs art is play, his play is art. It's what we all aspire to, I suppose. Allen Ginsberg said, re making art, "why do it if it isn't fun?"

My one main sadness is that the people who work now with Alan don't look hard for what they could do to give Alan fun. They're earnest, they're competent, they take great care that he doesn't do anything that might endanger his safety -- and in my HO, they suffocate him. They -- his staff, his team -- look at me like I'm the Mad Woman from Brooklyn when I harp on this, the need for "fun" or something of interest to do, but I can't imagine anything more important.

So, for his birthday, I'm maybe going to have someone make a very long, one-stringed instrument, that will vibrate into a single deep rich basso profundo note. Or maybe a huge brass cymbal, that we'll hang on the rec room wall. (rec room used very loosely). Or a collection of CDs. Not sure yet.

Will try to have the presence of mind to record this birthday. But Alan may be singing, and I hope that I'll be laughing and I might forget.

For more images of Alan, you can visit the website devoted to the film I made about him, and us.


  1. Susan....happy birthday to Alan and thank you for sharing your thoughts in this blog. Because of your film, Alan has touched a lot of people's lives, many more than one would expect of someone who doesn't speak and who has spent most of his life cloistered away at Letchworth. His story has touched our trainees who carry around his image and the image of the institution in which he lived through all their encounters with clients. Sincerely, Bob Marion

  2. Susan, I just caught this in my "junk mail" Hope it went well. For some reason it reminded me of Evelyn Glennie, a famous Scottish percussionist who is deaf. She plays barefoot to feel the vibrations.

    Best things in the new year.
    love wyn