an open door


{image is a photo of Brooke at age seven, watching a dress rehearsal of Godspell at a local community theater – with her Jesus doll.} 

Last night, an autistic friend reached out to me, frustrated by yet another APRIL! AUTISM! AWARENESS! attempt gone, for her, terribly, terribly wrong. As I read her words, the pain in them jumped off the screen. Being told again and again that you are a burden to society wears a person down. I wrote back, Just seeing this as I board a plane for home. I haven’t the foggiest idea what to do with it, my love. I’m exhausted. I just .. got … nuthin. I’m sorry this stuff is everywhere and I’m sorry it hurts so damned much to hear it. Some days it feels like fighting forest fires with a garden hose. 😦

And in so many ways, that sums up April, doesn’t it? An overwhelming sense of responsibility to do far more than is actually possible to do. Gratitude for good intentions weighed down by the very real consequences of those intentions ill-executed. There is always some point during this month of AWARENESS! in which I want to pull the covers over my head and just make it all go away. Because it just gets to be too much. Because it gets tiring reading stories that devote thousands of words – oh, such precious words – to autism without ever really acknowledging autistic people. So we stop reading them. Because it’s too much. Because we feel like we’re getting nowhere.

Today, I’m going to share a story that offers proof that what we’re doing here has meaning. That telling our stories matters. That thousands upon thousands of garden hoses might just be able to put out a fire.

An old friend of Luau’s named Jes Sloan reached out to me a few weeks ago to invite us to the Open Door Theater’s Autism Friendly Production of Working, in which she and her ten year-old daughter will be performing together. (I know, how cool is that, right?) She explained that the theater was created back in 1980 to offer opportunities for everyone in the community – especially those with differences – to participate in theater. The cast and crew were a glorious bunch, she explained, from every walk of life and spanning the spectrum of age, experience, skill level, and, well, humanity. But last year, they’d had an epiphany. While they were working hard to make the show accessible to every potential participant, it wasn’t always accessible for everyone in the audience.

They realized that they needed to make some changes. And they did. They created an autism friendly performance. A lot of places are doing things like this these days, which is wonderful, but as well-intentioned as they often are, I find that they tend, while being judgement free, to simply be a free-for-all. From Jes’s first email, it was clear that this was to be much, much more.

“Of course the experience won’t be right for every person on the spectrum,” she wrote, “but we work hard to try to make our theater space and experience welcoming for all attendees. We provide a social story on the website to introduce our community to the story, we provide training to cast and crew about welcoming guests who may experience theater differently than they do and how to be available to provide assistance if it is asked for, we keep the lights dimmed but not off, we provide a separate space where audience members can go if the auditorium proves to be “too much” for anyone, we provide snacks, drinks and squeeze balls, we introduce the cast in costume ahead of time, and, above all, there are no expectations of “silent and still” behavior. Movement and noise are expected and accepted, without judgement.”

In a later conversation with both Jes and the theater’s President, Sam Gould, they would explain that it was their autistic cast members who had guided the program. Who had improved upon the theater’s first shot at this last year with their input as to what would have helped them to feel comfortable in the audience.

I was hooked.

But then last night, Jes sent me another email. And, well, I was toast. She claims not be a writer, but I beg to differ. You see, I became convinced when I started this blog that when we are compelled by our stories, we are all writers. This was what she wrote …

Originally I thought I’d share with you what I saw backstage that struck me. There is some running, some goofing, a tiny bit of homework-doing, a lot of show-tunes singing … but mostly what I see are small groups of people, mixed up by ages/genders and physical and neuro-diversity, gravitating toward each other and getting to know each other better. Last Sunday I stopped to really LOOK at what was happening among the people around me. At one table I saw a 10-year-old NT girl and a 24-year-old Autistic woman sitting side by side teaching each other new patterns on the rainbow loom. At another, a group of teens and tweens were goofing off together with play doh. On the floor, a set of NT kids ranging from 10-14 years old were playing cards along with a mom and her younger daughter who has Down’s Syndrome. In MY corner was a group of adults practicing the lyrics to a tough song, and being prompted by a young Autistic adult. He told me that it had taken him just one day to learn the lyrics … and he was patiently repeating them for me so my old “NT” brain could try to absorb them, after 3 months of futile practice. What struck me, as I looked around the room at these eclectic groups, was how they all seemed to discover independently what they had IN COMMON with each other, instead of noticing/pointing out/being afraid of what made them different from one another. I’m blessed to experience it, and grateful for the opportunity for my 10-year-old daughter to experience it as well.

BUT … that wasn’t the epiphany.

The epiphany happened last night at our AFP rehearsal. We gathered to spend a little time talking with the cast/ushers/crew about making respect the basis for all of our choices (our choices of words/actions/behaviors) and answering questions … and then we did a “speeded up” run through of the show to be sure we were ready for our second weekend of performance. Midway through the act 2 rehearsal, when I was sitting in the audience enjoying the rare opportunity to actually WATCH this show, one of my cast mates, a young man (early 20’s maybe?) who I believe is somewhere on the spectrum and likely has some cognitive challenges as well (but to be honest none of us really know where our castmates are, “label-wise” … it just doesn’t come up in conversations backstage), wandered down from his seat in the audience right up to the front of the stage, and stood there, watching the action on stage. After a few moments of watching him stand, inches from the ASL interpreter’s face and “too close” to the stage, the “momma” in me thought, “I should quietly invite him to sit with me … his dad is backstage getting ready for the next scene and there isn’t anyone here to guide him to where he belongs …” but I didn’t … and I’m glad … because – EPIPHANY! (hoo-boy is it hard to admit that it took me this long to have this particular epiphany … I mean, I’m a die-hard devotee of Diary! I’m a cast-member of the Open Door Theater Company! I have a masters’ degree in elementary ed AND I have family members on the Autism Spectrum … I talk about acceptance instead of just awareness … I “get it” … or I thought I did. But now I have to realize I’m only just beginning to get it …)

Here is what I realized …

WHY did I think he belonged in a seat? Just because that is where I am comfortable watching a show, that doesn’t mean it should be his experience. He was up front, taking in the action in the way that felt best to his senses. My instinct, though it came from a good-hearted place, wasn’t one of acceptance. My instinct was to “help/fix/correct” the situation … and my instinct was wrong. The entire point of our Autism-Friendly Performance on Saturday is to welcome everyone to experience live theater in the way that feels best to them … JUDGMENT FREE. Sitting still, facing front, eyes on the actors and ears on the music is NOT the only way to experience a performance, and it is not what we will expect nor demand of our audience and their loved ones and caregivers on Saturday afternoon. We, and our audience, expect and will accept movement, noise, stimming, singing, questions and mid-show exits.

We love theater. We want everyone to have the chance to decide if they might love it too.

Some attendees might love the music, others the action … and some might even want to give performing a try someday. Open Door is here for them. There are parents who never get to go to live theater because they either can’t leave their kids with other caregivers, or they don’t feel safe bringing their kids into an environment where others will judge atypical behavior. Open Door is here for them. There are siblings who never get to see the end of a movie or a play because they have to leave when the rest of the family beats a hasty exit in fear of disturbing other audience members. Open Door is here for them. And there are actors whose family can’t go together to see them perform (and this SO makes me think of your Katie and Brooke and how carefully Katie finds ways for Brooke to see shows, even at dress rehearsals), because of a sibling who doesn’t exhibit “accepted audience behavior.” Open Door is here for them.

I realize that I don’t really know Brooke or Katie … or you .  And in reality, I don’t know Luau anymore either.  20 years is a lifetime of changing, and neither he nor I are the same people we were back in the early 90’s in Maine.  BUT … I have this thought in my head that maybe … someday … Brooke and Katie can sing together in a show.  If they want to.  Because it seems that they both have a connection to music and performing that is pure magic.  They feel it.  If that day comes, Open Door will be here for your family too.

They are there for all of us. Not out of a sense of obligation nor because it happens to be April, but because this is simply what they do: they make theater accessible to the community, of which we ALL are a part.

There are still tickets available for the autism friendly performance on Saturday. If your family is anywhere near Acton, MA, I hope you’ll consider attending. If you’re too far away, love the idea, and wish there was something similar near you, get to know more about the theater and how they operate. Dreams start with nothing more than the belief that they are possible. Just ask my friends, Tina and Alysia.

Learn more about Open Door and get your tickets to tomorrow’s performance HERE.

If I haven’t convinced you yet, read THIS.


8 thoughts on “an open door

  1. That is absolutely phenomenal! I can’t wait to hear about it after Saturday. One day soon, I hope to hear that Katie and Brooke are performing there together.

    Love you,

  2. The Open Door production of Annie last year was one of the most incredible experiences we’ve had as a family together. I consider it a turning point for me as a parent – it gave me the courage to try more things with all three boys. We now go to movies together, the driving range, etc and I use everything I learned at Open Door to get us through. I’ve never been to something as inclusive and understanding as this.

    I hope to get to this production as well.

  3. Don’t think I realized how much AWARENESS! month has already been weighing on me until I read this. Just what I needed.Thank you to your friend and all those who work so hard to put acceptance into practice everyday.

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