Getting to be Gotten (OCALICON2014)

This is a story about community.

It starts way back when, in about 2010 (she could probably tell you the date!), when a 19-year-old autistic girl who had commented a few times on my blog said that she thought we could be good friends and asked if I would talk via email.

That girl knew what she was talking about (she usually does).  Here’s us, last July, the first time we met!

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I had done autism advocacy in 2011 for a time, but when I got sick, I really stepped back and hadn’t done anything public in a couple of years.  The Autism Society of America Conference was held in Pittsburgh (my hometown) last summer, and I wasn’t into the whole conference scene, but I wanted to go for a day because I wanted to hang out with Chloe!   Something tells me that, once again, the girl knew what she was doing, because I was totally hooked.

I attended OCALICON last year… always in Columbus in the third week of November.  Because I wasn’t even aware of wanting to go until late July, I hadn’t submitted any proposals to speak, but I did get to go and have a blast and meet so many long-time online friends.

This year, I submitted a few proposals, and the one Stephen Shore and I proposed on sensory issues was accepted as a panel discussion… as luck would have it, the other half of the panel was Chloe and Brigid, another spectrum friend (Val Paradiz was also originally on the panel but couldn’t make it–we missed her!).   As the conference drew closer, I was also asked to participate in a panel on the main stage.  OCALICON draws about 2000 people, so I was both shocked and very excited to be asked to participate in this panel!  I am one of the Young Leaders with the Autistic Global Initiative, and our leader, Sondra Williams, is a good friend and board member at OCALI who suggested that I might be a good fit for the panel.

We rode to Columbus, and we didn’t cross the city line before I was devising dinner plans with Chloe!  I was pretty tired by that point, but if you’re gonna be tired, hanging out with some of your favorite people is the way to do it.

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Wednesday was the day for both of my speaking events.  The sensory panel went off without a hitch.  My mom said that it sounded like we’d rehearsed… ha.  We wung it (winged it?) start to finish!  But we know our material and each other, so no one was clued into the winging!  Here’s me giving my part of the presentation; I focused on sensory issues in the medical setting and coping skills to address them, and I also talked about feeding issues in spectrum kids, complete with my favorite analogy: “Would you like to eat your shoe?   Does it matter what kind of shoe it is?  How many stickers would it take for you to take a bite?  Do you dislike shoes because your mother didn’t cook them well when you were a kid?”

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Then, we got ready to speak on the main stage!   Sondra Williams, Chloe Rothschild, Stephen Shore, Cameron Blackwell, and I (all spectrum advocates) did a panel session.  We’d been given a set of questions to prepare in advance, and we took some from the audience, too.

Some of the funniest and best moments were in the hour prior to the session starting, as we were on stage and preparing for the panel.  We had individual mics.  There were two giant screens on either side of the main stage, and I mean giant!

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Yup, that’s me, larger than life!  When I first saw myself on the screen, I made a very typical happy-startle noise for me… WOO!!!  It came out before I even knew it was going to… I was so surprised to see myself on such a huge screen!  Stephen and Cameron, both musicians, were mouth-trumpeting various band pieces, and I thought (totally inside my own head) that they should do 76 Trombones.  It wasn’t two seconds later that Stephen started it, and then Cameron took over the melody while Stephen did the counter-melody.  And thus, we find the answer to the question of what happens when you put five autistic people on stage 🙂

Let me say, and this is probably my one and only downside the whole event… the stage lights were intolerably bright.  I actually had the beginning of a migraine by the end of the one-hour session.  Sondra smartly wore sunglasses, and good old Chloe (actually, she was the youngest of the group, but it’s just an expression!) got hers out of her purse for me.  I wore them for a bit and then took them off for appearance’s sake (yes, yes, I can be vain!)… but not before I struck a movie star pose.

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I sit with my legs crossed or under me all the time, because they hurt me when they’re down, and the blood pools in my feet.  I said something about knowing it looked unprofessional but that I was going to pull my feet up until the audience began to arrive, Stephen said, “Solidarity!” and pulled his up, too.  Everyone had theirs pulled up for a bit.  I never would’ve thought to make someone feel included like that… but you can bet, when Chris (the OCALI staff person who led the discussion) asked us each to give an example of when we feel INcluded, and another of when we feel EXcluded, that I knew that I knew I felt included among my spectrum pals.

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A few other photos.  First is my new favorite photo of Chloe and I, right before I hugged her so tight I almost made her feet go off the ground, as she would tell you.  Hey, I do NOT like light touches!  The second photo is me with Sondra Williams, who is an incredible advocate, mentor, and friend.  She is the leader of the Autistic Global Initiative’s Young Leaders Division.  I am one of those Young Leaders, though I am getting close to the age cut-off… but I very much wanted to be a YL before moving into a full AGI role, because I know I have so much to learn from Sondra as well as the other YLs (Chloe Rothschild, Dani Bowman, and Jeremy Sicile-Kira; Campbell Teague and Brigid Rankowski are now in the adult division). She is so in tune to each of us need and how each of us can fine-tune our advocacy skills.  I so admire her open-mindedness and ability to trek through wildly differing viewpoints and never let anyone walk away feeling dismissed.  Her faith, too, is something I greatly admire.  We all gushed about Sondra on the stage… she is one of the best mentors to young advocates.

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We had a Young Leaders meeting, too.  One of the keynote speakers for OCALI this year was Dani Bowman, a young adult on the spectrum who is a very talented animator and artist.  Dani and I have crossed paths via Facebook, but she lives in California, so we had never met.  I was so glad to finally get to meet her, and she is every bit as sweet and kind in person as she is to all of her Facebook friends.  That’s what I so admire about Dani… she treats everyone with kindness.

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Thursday night, we all went out for dinner… and I had no idea that there was a surprise party planned for me!   The perfect way to celebrate all it took for me to get through that MFA… friendship, community, and a lot of laughs.

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Last, but far from least, check out this series.  Not sure if they’re worth a thousand words… but they are worth every bit of these six: Together, we get to be gotten.

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If all of that doesn’t prove well enough that we need each other to succeed in advocacy while deeply valuing each other in order to succeed in life, here’s the kicker.  The big challenge in all this was going to be finances–I could not have gone on my own pocketbook.  I am working my tail off (how about that–I finished my MFA with a 4.00 a couple of weeks ago!) to get to a place where I can support myself and my speaking events… but this year, there was no way.  For the 15 months I was in a nursing home, I got $28 per month… not exactly enough to be able to save!   For financial and medical reasons, OCALICON is the only conference I attend each year.  Without this one point of connection, my work and my passion, my relevance and my perseverance to keep fighting through everything that holds me back would be running on fumes.  I very hesitantly started a GoFundMe fundraiser in hopes of bringing in a few dollars… anything would help!   The fundraiser wasn’t up for two days when a total stranger had funded the entire thing.  Is that even possible?  It must be, because it happened.  I won’t “out” the awesome (spectrum!) donor, but I will say that he said that he had once been where I was and now that he was able to help, he wanted to–and to go and do good things.

Community.  It’s everything.

I don’t think I’ll ever not be speechless when I think about that generosity, and I am more dedicated than ever to educating , advocating and mentoring to improve understanding of quality of life for autistic people!  To the person who made all of this possible, my deepest gratitude.

I’ll end with another six-word phrase that capture all the joy and purpose and reason for being together within these photos: Not despite autism; because of it.



The handcuffs slid on so silently, they caught me unaware. I hadn’t run entirely amok to that point, but the standards of society had not yet made their way into my little life.

First, they encouraged me with smiles and sing-song voices and hopes of growing big and strong. “Good girls eat their vegetables!” Then, they bargained, promising rewards of playing outside and stickers and a coveted spoonful of peanut butter. Finally, they laid down the law: “You’ll sit here ‘til you’ve eaten that broccoli!”

Shocked at the demand, I startled. Angry, I sulked. Tired, I slumped. Exhausted, I finally slept… right at the dinner table. Having committed my first crime against Good-Little-Girldom, the cuffs were silently slipped over my wrists and locked in place.

The experts insisted, “She’s smart enough to figure it out! She’s just stubborn! Starve her out and she’ll cave!”

The food police didn’t know, for I couldn’t tell them, that raw fruits and vegetables were as appetizing to me as my muddy sneakers or a pile of dried leaves. How many positive thoughts or stickers or promises of candy would they need to overcome the part of their brain that tells them not to eat those things? I couldn’t say much, but my vomit spoke volumes.

First grade was a jail cell disguised as a circus tent. My first exposure to life in the general population taught me the cardinal law of childhood: Different is bad.
Two dozen pairs of eyes had been bright and expectant in September. By November, some stared dimly at the rainbow walls, now immune to the same messages hung there day after day. Others intently picked the wood back from the point of their pencils or shredded paper in piles on the floor, mindless actions to keep themselves awake as the warden droned: “Put your name on top and write the correct color word underneath the picture.”

My eyes had glazed over—sensory onslaught coupled with intellectual deprivation—but they suddenly exploded with light. I likely didn’t raise my hand, but the words wouldn’t stay down. “What if my mom taught me that blue was really yellow, and red was really green? Would my brain still know or could a kid be taught wrong and…”

I heard the tap of two fingers on the corner of my desk. Looking up, I saw a finger raised to puckered lips. This was our code, the one she used only with me.
I had read the formal reports. “She has to learn to stay on task! She’s smart enough to know better! She has to be more organized before she can have more difficult work!”

The warden didn’t know, for I couldn’t tell her, that I didn’t do the work because I spent my evenings lost in my sister’s sixth-grade text books and Discovery Channel documentaries and The Hobbit.

I only did two years of my three-year sentence in the district prison. The building was massive but invisible to outsiders, the faded brick so plain brown it faded right into the standard, dreary Pittsburgh skies.

Even at the end of my stay, I would turn a corner only to find myself lost in the monotony of the plain white plaster walls, uncertain which corner I’d turned, which room I sought, what time or even day it was. Scores if not hundreds of separate rooms, and I only knew where to find a single window, a rare six-inch slit of clouded glass, partially obscured by shelving. Built in the 1970s, air-recycling vents were the state of the art technology that meant a stench from a chemistry experiment might turn up on the opposite corner of the building in the gym.

The bells rang by the oft-broken clocks, making them impossible to predict, and my aversion to beeping and ringing meant they hit me like gunshots. Arms rigid, fists tight, I walked through a battlefield, every bump from a fellow automaton a bomb for my senses.

Cliques formed and taunts flew under the surveillance of guards who insisted: “She’s too sensitive! She’s disrespectful of authority! They wouldn’t be so cruel to you if you weren’t so maniacal.”

The sheriff didn’t know, for I couldn’t tell him, but trying to force this square peg into round holes only damaged the peg.

I’m disabled, not broken.

Sub-standard scores do not mean sub-human lives. Delayed means all in good time, not permanently impossible. Autistic means radically aware, not locked away.

The jails are not built of autism but expectations. A brick at a time, my purpose is to tear them down. Every key typed opens an old lock:

I value my education more than the acceptance of my peers.  I found myself a square-hole drill.

Being smart doesn’t mean I understand social cues or that I can’t learn them.  Teach me, don’t force me; value cooperation, not compliance; challenge my intellect, engage my mind.

My brain doesn’t register that broccoli as food. The handcuffs fall off, my hands and my spirit are free.

(Written for my Place and Setting class; my thesis is in, and I am seven days from finishing my MFA!)