Last month, I wrote a bit about Crispin Glover’s movie “What Is It?” (I’ve seen it twice and I’m still not sure — nor am I convinced the creator knows much more than I do) and talked about the notion of an artist (in this case, a film maker) depicting people with Down syndrome without making that depiction be specifically about their disability.

In other words, Glover used (note: this is not an unintentional use of the word “used”) people with Down syndrome as actors depicting characters who were not, per se, disabled. At least, they were never mentioned or treated as such.

Before I saw that movie, I thought that was a swell idea, a novel concept, something really great for people with Down syndrome.

And to the contrary, before I saw the work of artist Chris Rush, I felt the opposite.

A retrospective of Rush’s work is on display now at the Mesa Arts Center. Called “Stare,” it largely depicts images of people with developmental and physical disabilities. That’s the point of the show, of much of Rush’s work.

Now that I’ve actually seen the show, I can’t say loudly enough how wrong I was. This artist — who hails from nearby Tucson — is absolutely remarkable. If you’re anywhere near Mesa, Arizona tomorrow night (and you don’t have tickets to see Elvis Costello, the one legitimate excuse I can think of) you should go meet him at the show’s opening reception. I wish I could.

My only disappointment with Rush’s show is that it didn’t include the image above, which I’ve admittedly pinched from his web site. I feel guilty about that, but I was so moved when my dear friend Trish showed it to me (she wrote about the show for New Times) that I couldn’t resist.

Rush — who, according to the scant materials on the Web about him, spent time working with developmentally disabled people and, with permission, drawing them (no, that’s not a photo — it’s done in Conte crayon, amazingly enough). Check out the images on his site and you’ll see what I mean when I say that his work is meaningful in a way that’s tough to put into words.

Funny, Rush faces disability without flinching, and for once, looking at his work, I don’t flinch, either.

For me, the image above, called Swim 2, is an incredible tribute to Sophie. Not that Chris Rush knows her, of course. But in that image, I see more clearly than I ever have the vision of Sophie as an adult. And it makes me incredibly happy.

As an aside, looking at that image, for the first time ever I entertained the possibility of getting a tattoo. When Sophie’s a grown up, if she wants to get them together, maybe I’ll do it.

The girl was struggling with some math.

“Hey,” she finally called to a co-worker, “what’s half of $5.98?”

I knew it was a bad idea to ask the cashier to honor the “buy an adult entree and get a kid meal free deal,” but there were signs everywhere. It seemed weird not to mention it. Annabelle, Sophie and I had made a last minute decision to eat out last night; nothing fancy, just the rundown IHOP around the corner from the house.

We’d had so much fun. (It helps to leave the iPhone in the car.) Giggled way longer than we should have, and now the girls were whipped into a silly frenzy, particularly Sophie, who was running around the near-empty restaurant, Annabelle in hot pursuit.

“Uh, it’s $2.99,” the boy told the girl, and they both laughed. “I’m so retarded,” she announced.

You might be surprised to know that more often than not, I don’t say a word about the R word. But Annabelle was dangerously close to ear-shot when she said it, and I was annoyed.

“Hey, could you please not use that word around my kids?” I asked the girl.

She looked at me, then at Annabelle, then at Sophie, and I watched her expression — nothing, til Sophie. Then pity. (I hate that. Fuck her. She’s the one who works at the crappy IHOP. I don’t need her pity. And Sophie certainly doesn’t.)

“OH! I’m so sorry!” she said, as though she was only sorry because she’d said it in front of Sophie.

She didn’t get it. Not really. Why was I surprised? Why bother?

“Well, you shouldn’t say it in front of any kids,” I said, taking her in, including her name tag. “Particularly since your name is Charity.”

OK, so that wasn’t very, well, charitable. It’s not her fault her mom named her that. But I was pissed.

At least I didn’t say what I really wanted to say.

“Don’t worry about it. Having to ask what half of $5.98 is really is retarded.”

Here is the latest joint creation to emerge from our home. It was a Sophie/Mom team effort for Trish’s birthday (just a few weeks late, sorry Trish!) depicting Sophie (on the left) and Trish’s daughter Abbie.

We should all have someone in this world who loves us the way that Sophie loves Abbie. I hear about Abbie at least a dozen times a day.

It’s hard to tell here, but Abbie will be 15 next week. Note the fingers and toes (no, that’s not a skateboard) as well as Abbie’s micro-mini skirt and a new addition to Sophie’s drawings, teeth.

This morning I was racing around, Monday-style — trying to unearth suitable items for the lunch boxes and figure out how much Sears would charge to come out and look at our broken (again!) dryer — when I realized that Annabelle was reading to Sophie.

That’s not such an uncommon occurence, but I felt a pang — of several things, mostly guilt — when I noticed Annabelle was reading the book Sophie had been begging (or nagging, depending on your perspective) me to read to her all morning.

The girls were peacefully eating their Cheerios (Annabelle’s with milk; Sophie had requested two bowls — one with milk, the other dry), and without making a big deal out of it, the big sister was reading to the little one.

I’ve always been critical of people with large families who let the older kids do the parenting. But this morning, I got it — and I was grateful. Sophie refused to listen to me (a grudge because I was too busy to read to her?) and so with my prompting, it was Annabelle who convinced her to go to the potty, to change from PJs to dress, to put on her shoes, to quickly choose a toy and leave the house for school.

She was her typically low-key self about the whole thing, but I could tell Annabelle was pretty proud of herself. Not as proud, however, as I was of her. In so many ways, and more every day, she’s my hero.

The topic of heroes came up last week when it was time to choose assignments for Best of Phoenix, the scourge of my professional earth – the phone book-thick, annual compendium I edit (which means create and, sometimes, largely write) and sweat over for many months each year. The idea is to gather all the good stuff in town as a break from the bitching and moaning the alt weekly I work for indulges in the other 51 weeks a year.

It’s always a challenge to keep the material fresh. This year, I asked each contributor to come up with a hero he or she would like to interview. I was thinking along the lines of a well-known politician, or maybe a sports figure, but more than one person wanted to interview Sophie. I thought that was sweet (particularly since she made Ray’s list — some days it’s more fun to work with your spouse than others) but I couldn’t help thinking that — while Sophie’s a terrific choice, to be sure — I’d frankly be more likely to choose Annabelle.

Annabelle is not always patient with Sophie. That’s for sure. They bicker and nag, like any other siblings. One day they’re emerging from the tub literally wrapped together in one towel, and the next day Annabelle’s banished her sister from the bathroom entirely for “being mean.” (Probably deserved, since I have, in fact, heard Sophie call Annabelle “stupid head” on more than one occasion.) 

But more often, I’ve seen in Annabelle this incredible patience and love. She didn’t sign up to have a sister with special needs, and every day (along with the long list of other things I worry about) I worry about her. On some level, is she resentful? Is she getting less attention than she should? Is there teasing going on at school that I don’t know about?

And — the mother’s speciality, pressing the Fast Forward Button — what will happen to my girls in 15 years? It’s one thing to read to your little sister at the breakfast table; it’s quite another to be her life-long caregiver.

I’d be better off focusing on getting the girls to school before the bell rings, which is what I did this morning — with Annabelle’s help. After a successful school drop-off, I headed to the office, where my computer crashed so many times I had to give in and call the IT guy. While he slaved (or something) I killed time by tackling the piles that would cause great alarm were an OSHA representative to stop by my work place.

Amidst the boxes of dusty documents and back copies of Best of Phoenix, I discovered a pile of old snapshots — two, maybe three years old? — of the girls, taken by our good friend Kim.

They are on the lawn, and Annabelle is showing Sophie how to blow dandelions. I stood there for a few minutes, enjoying the past and ignoring the future. Then I went back to cleaning up.   

The other day, my dear (and hilarious) friend Tania responded to an apology-packed email (I had to reschedule a long-planned meeting) with, “Hang in there, remember our people have suffered enough!”

I cracked up. As usual, Tania’s timing is perfect. It’s Passover, the week the Jews celebrate our collective suffering more than any other time of year. A novice might think that the height of suffering is Yom Kippur — the Day of Atonement, when you are expected to fast from sundown to sundown in apology for myriad transgressions — but anyone with that impression has never caught a whiff of gefilte fish on Passover.

To be fair, not everyone hates gefilte fish, which I believe is only a traditional food, not one included in any religious observations. In fact, my friend Todd happily took the second untouched jar home Tuesday night, at the conclusion of what I considered to be a darn successful Passover seder.

Todd deserved the gefilte fish – and in a good way. The guy not only made his own horseradish, HE MADE MATZOH. No, that is not a typo, and for details you can check out his blog.

The homemade matzoh drew whoops from the crowd. It was that kind of night. Instead of lamenting the Jews’ exodus from Egypt (though that was mentioned — and even reenacted in an impromptu skit by the kids, featuring Anna as the Red Sea, Annabelle as the holder of Baby Moses and Sophie as Pharaoh) we celebrated family and friends, toasting with sangria instead of the traditional god-awful Passover wine. (The evening was deemed a success when one guest, even before we’d sat down for the seder, announced, “I’m drunk!”)

I think all 17 guests had a good time, with the possible exception of my father, who complained of a sore butt from sitting for so long even after I rushed to serve the matzoh ball soup in the middle of the seder program.

Todd’s spouse Robrt had a brisket cook-off with my mother (recipes here), I made my first seder matzoh ball soup (from the box, don’t be impressed), we sang happy birthday to party guests turning 12, 70 and 84, and Ray gave a presentation — complete with audio and a reading from The Bible — entitled, “A Heavy Metal Passover.”

Yes, as my friend Kathleen put it the next day, the whole thing was quite “unorthodox.” But if you’ve ever been to a real Passover seder you know how miserable (let’s be honest) that experience can be and frankly, collective suffering aside, I felt I’d personally suffered enough after searching the city of Tempe for kosher wine and matzoh. (Next year I’ll head to Scottsdale.)

I’m glad my father suffered through the evening, because while I have very few memories of religion from childhood — and even fewer involving him — hearing him read a paragraph of the Passover story from the Haggadah (the “official” Passover prayer book, mine was a little non-traditional this year) as we went around the table brought me right back to my Great Aunt Charlotte’s living room, where we celebrated Passover every year when I was a kid. I even had to wipe away a couple of tears. (Same deal when Annabelle read the Four Questions –another seder tradition — albeit in English instead of Hebrew, since we still haven’t gotten around to joining a temple.)

As my dear friend Deborah — pious enough that she was the one chosen to “run” the seder yet cool enough that she named it “Let My People Go Go: A Very Groovy Passover” — put it so wisely the next day, that’s the stuff that’s important.

Oh, and here is a drawing my mom whipped up for the Haggadah that — I swear, Mom — was inadvertently left out.

No, it’s not technically today.

I didn’t know (or maybe I knew and forgot) that Sunday, March 21, was World Down syndrome Awareness Day.

Sophie and I were waiting at the car wash when I noticed Maya had posted some lovely thoughts about Leo, in honor of the day.

Whoops.

I went home and told Ray, who said exactly what I knew he’d say: “Every day is World Down syndrome Awareness Day in our house.”

True. Still, I let Sophie pick out some chocolate mint ice cream sandwiches for dessert. I didn’t tell her why.

Tonight I saw a lovely post from Sunday by StarrLife, who linked to this video, called “I Have a Voice.”

If you’re looking for a good cry (and you know who you are), check it out.

Annabelle has a half-hour piano lesson every Tuesday evening, and since my iPhone doesn’t work in her teacher’s studio, it’s the one time I know I can sneak in a little pleasure reading.

Last night I was hustling through “The Lonely Polygamist” by Brady Udall (it’s fabulous) when something tore me away from the story. My chair is only a couple feet from the piano, so I’m always listening, at least sort of.

“All right, Annabelle,” said her teacher, a lovely woman who’s promised Sophie can start lessons when she’s 7. (Annabelle’s age when she started.) “Tonight we are going to learn a new Italian word. Ritardano!”

You need to know that the word’s not pronounced the way it looks. It’s “ree-tard-ano.” Or, if you add the teacher’s gusto, “REE-TARD-ANO!!!!!!!!!!”

I felt myself flinch. I looked up at both the teacher and Annabelle. Neither showed any sort of reaction; they simply went about the lesson, the teacher explaining the word means to play slowly. I was so glad. It’s hard to imagine how, but I think the word “retard” might have escaped Annabelle entirely — so far.

I am down with the whole “Don’t Use The R Word” thing. As you know if you’ve read GIAPH for a while, I’ve asked co-workers not to use it around me. Not perjoratively, anyway.

The whole thing makes me a little sad, for a number of reasons I was reminded of last night. I work in a business that celebrates both language and freedom of expression. No one should be told not to use a word. Right?

Make that, no one should have to be told not to use a word.

Words hold power and we have the ability to use them for good or for evil. In this case, last night, I thought ritardano sounded just right, as I listened to Annabelle play slowly.

To be honest, I’ve always been fond of the word “retarded” when used to talk of something slowing down (rather than to attack a particular person). Think about the word. Let it roll around in your head. To retard.

It works. It’s a good one. But not necessarily a keeper, given the cultural backdrop. Same with gay, another word of which I’m quite fond but can’t use.

Funny, sometimes I watch Sophie and think that retarded fits so well. Whether I like it or not, she is, in fact, slowed down. Her occupational therapist once told me that with people with Down syndrome, it’s as though they are wearing gloves on their hands; their sense of touch is that impaired. Sophie’s ability to use her fingers is retarded. 

It fits, right? But I won’t be trying that description in public any time soon.

You can throw rotten tomatoes at your computer screen, but the truth is that I didn’t love “Alice in Wonderland.”

It’s my own f-ed up fault.  I let Crispin Glover ruin it for me.

I could blame the fact that, as my dear friend Heather’s 10 year old daughter put it, Tim Burton’s wonderland just wasn’t “freaky” enough. (True.) Or I could mention that despite the fact that I reluctantly agreed to see the movie in 3-D (not my favorite medium; things jump out at you) my husband was so bored he fell into a sleep so deep I had to hit him to make him stop snoring, which is sort of a buzz kill when you’re trying to enjoy a movie. (Also true.)

I could mention that I’m honestly not a huge Johnny Depp fan and that I thought his Mad Hatter was just a little too much like his Willy Wonka. (Very true, and then some.)

But the real truth is that the thing that really kept me slumped in my seat in a movie theater in Ahwatukee (read: suburban hell, for you non-Phoenicians) instead of up and joining Alice down the rabbit hole had nothing to do with any of the above and everything to do with the fact that Crispin Glover’s in that movie.

Damn! I thought when he first appeared on the screen. I totally forgot he was in it. At least I had some Red Vines to keep the night from being a total wash.

You probably know him as that guy from David Letterman, or the villain on Charlie’s Angels. But I know Crispin Glover as the creator of a series of movies, the first of which is called “What Is It?”

And as the guy who refused to talk to me.

You probably haven’t heard of “What Is It?” because, although the movie was released years ago, it’s kept under lock and key. Glover tours with it and says he shows it only when he can be there to explain it. Given the subject matter, that’s smart.  

I’ve been working on a longer piece about this guy and his movie for years (literally, sadly, years) but for today I’ll just give you the short version: Glover made a movie that features — along with naked women wearing monkey masks and smashing watermelons, a man with cerebal palsy naked in a conch shell, and a lot of Nazi and Shirley Temple references — a large number of people with Down syndrome.  (And if you’re confused, join the club. That’s about how haphaazardly those elements are introduced.)

The people with Down syndrome do not appear naked, though one couple does have sexual intercourse once during the movie. One of them crushes snails a lot, and they generally cause some trouble.

The most notable thing about the actors with Down syndrome in “What Is It?” is that they are not playing people with Down syndrome. They’re just playing regular people. Well, regular if you consider murderers (of both snails and people) to be regular people.

I was taken with the notion that Glover would go to lengths (and he obviously did) to include these people in the film. And like any parent of a kid with Down syndrome, I loved the idea that anyone with DS could transcend it — in other words, play a “typical” person, if only in a movie.

I wanted to get a copy of the film for my Down syndrome box (where I collect references to Down syndrome in pop culture) but since I couldn’t buy a copy, I decided to drag my dear friend Kathleen to LA a couple summers ago to see the film. (I still owe you, Kathleen.)

It was definitely an Emperor Has No Clothes On (and neither do most of the stars of the film) moment, and let’s just say that while I might bumble, Kathleen is a sophisticated, published art critic. She knows her stuff; she was not impressed.

We looked at each other as the (I assume) film students in the crowd clapped heartily and piled accolades on Glover, who prides himself on including a lengthy Q&A at the end of the presentation.

One of the first things Glover mentioned was that he only acts in mainstream feature films to fund projects like “What Is It?”

Someone asked why he chose people with Down syndrome, and Glover explained that when he was a child, he went to school with a lot of developmentally disabled kids and always liked how people with Down syndrome looked.

He also mentioned, as an aside, that while few people seemed upset about the possible exploitation of people with DS, when he brought the film to San Francisco, there was a great uproar over the fact that snails were killed in the course of production.

I wanted to know more. How did Glover get permission for these people to act in his film? Could I get in touch with some of the actors and their families? What did they think of his subject matter?

Did this whole endeavor further the cause of people with Down syndrome — or not? I couldn’t decide.

I waited til he was signing books to approach him, explain my situation, and ask if I could interview him sometime.

He was very sweet, agreeing to do whatever he can to “help the Down syndrome community.” Contact me through my web site, he told me, adding that maybe he’d come to Phoenix soon.

I waited, and he did. It was several months later, and something must have transpired, because when I contacted the PR people on the film to ask for that interview (they are local, I actually know them, and they were very apologetic) I was shut down. Hard. I went to the film anyhow, and stuck my hand in the air for a good half hour before Glover called on me — then shut me down again when I tried to ask about Down syndrome.

I don’t get it. And I probably never will, because I can’t imagine at this point that Crispin Glover will ever answer my questions. To be honest (and not very charitable) I’m not so sure, having watched him during two Q&A sessions, that he’s really capable of it. He seems impaired, somehow. (And I don’t use the term lightly.) He’s either acting dumb, or he really is dumb.

Too much acid?

To be fair, I probably would have loved “What Is It?” when I was in college — if only for what I would have called its brave risk taking. But now I’m an old lady with a kid with Down syndrome, and different things look brave to me.  

I wish you could see “What Is It?” (I really wish Matt, the wise man from Welcome to Illinois, could see it.) If you have seen it, what did you think?

And – did you enjoy “Alice in Wonderland”?  

And finally — I can’t resist, I have to ask, even though you really will think I’m as crazy as Crispin Glover, or at least as obsessive. Didn’t you think — c’mon, I know you did — that Tweedle Dum and Tweedle Dee looked just a little bit like they had Down syndrome? More than a little bit?

See? I can’t escape my own head. No wonder I didn’t think “Alice” was freaky enough.