Moving Boulders

In 2011, I was at a conference around disability and inclusion in Toronto.  On the day I arrived, I walked into a shared hospitality room for conference attendees.  There was a young woman at a table by herself, so I grabbed a cup of coffee and sat down with her.

I introduced myself, but she didn’t respond verbally, so we sat there together while I drank my coffee.

A few minutes later, an older woman came in who knew her and joined us.

The older woman pulled out a laminated piece of cardboard that had the letters of the alphabet printed on it.

She introduced herself to me, and I introduced myself to her.  Then she used her hand to guide the hand of the young woman around the letterboard, slowly spelling out an introduction.

We had a nice little conversation, with the older woman alternating between responding herself and guiding the hand of the young woman to respond and participate in the conversation.

Over the first two days of the conference, I noticed how these two women went to sessions together, and how the older woman would spell out answers and thoughts by guiding the young woman’s hands.

It was a new experience to me, and while I’m not proud of it, my perception and understanding at the time led me right into judgment.

I perceived the older woman as some kind of ambitious staff, showing off and manipulating the young woman, who to my eyes, was clearly nonverbal and autistic.

It seemed incredibly bold and supposing of her to commandeer this young woman’s body and essentially force thoughts and conversations that, again, in my limited understanding of the world and autism, clearly weren’t there.

Why on earth would someone pretend like a person with an intellectual impairment could think through a conversation?  And why would they take it to the extreme of typing out fake conversations?

It perplexed me and went against what I thought was the reality of the situation.  I was sure of it:  This was some kind of pushy political correctness.

On the morning of the 3rd day of the conference, however, these two women came into the session I was in.  We all went around the room and introduced ourselves, and the older woman introduced herself as the mother of the younger woman.

I was stunned.  All of my judgment crumbled.  All of sudden, I was no longer witnessing an ambitious staff who was showing off and pretending something was there that wasn’t.  I was witnessing a loving mother doing her damnedest to bring her daughter’s voice into the world.  I was seeing a level of patience and devotion that I couldn’t even fathom.

I spoke to them a few more times throughout the conference and was grateful for the example of both of them.  I started to ask myself how much it mattered whether or not the mother was actually spelling out the daughter’s thoughts.

After all, she was simply helping her daughter participate in healthy and positive conversations.  She wasn’t spelling out “Can I buy some drugs?” or “Do you want to fight?” or anything dangerous.

I left feeling like my judgment of those two was totally misplaced, and with a deep appreciation of that mother’s intention and attention to her daughter’s social presence in the world.

Two years later, in 2013, I watched the film “Wretches and Jabberers” as part of a local film festival.

The movie follows two men, Larry Bissonette and Tracy Thresher, as they travel the world. They are both autistic and use typing as a way of expressing their thoughts. In the first few scenes of the movie, they flap they their hands and pace around rooms and repeat phrases that seemed typically “autistic” to me.   Soon though, they begin typing to each other, and share profound, insightful and relevant thoughts that reveal their underlying intelligence.

My mind was blown.

Up until the moment they started typing, I never assumed that anyone who was autistic was also intelligent.

I thought back to that mother and her daughter, typing out her thoughts, willing her voice into the world as best she could.

A few months after I first watched the movie, Larry Bissonette actually came to Cincinnati for a visit.  We were fortunate to host him at Starfire and 30 people showed up on a Saturday morning to hear Larry’s thoughts on the movie and the world.

Larry told some of his story, and in between typing on his iPad, would stand up and pace, or move his hands or say a few phrases over and over.  He did that a few times throughout the morning, and then would return to typing.

He and his facilitator, Pascal, told the story of how Larry studied and practiced a sort of mindful, meditative focus that allows him to move his fingers enough to type out his thoughts.

They described starting with Pascal’s hand over Larry’s hand, and over the years, moving Pascal’s hand up Larry’s arm.  Over 20 years later, a simple touch on Larry’s shoulder was usually enough to help him focus on typing.

In the movie, Larry seemed most happy with his painting, which he does in a swirling playful style, using his fingers to create landscapes and scenes with lots of different colors. He showed pictures of his paintings and took questions from the audience.

One of the first questions Larry fielded was if he prefers to communicate with typing or through painting.

I will never forget his response.

Pascal touched Larry’s shoulder, and his body seemed to settle in.  He began typing:

“Painting is like flowing water, typing is like moving boulders.”

I’d never considered before the movie and that visit with Larry that not only were autistic people intelligent, but they were also aware of the struggle of being trapped in a body that didn’t regulate itself the way mine does or that most people’s bodies do.

I, like nearly everyone else throughout history, just assumed that these people were autistic, and that being autistic meant that you were just a person with random behaviors detached and unconnected to human thought.

In a way I considered autistic people almost non-persons. People who weren’t really human at all, but some sort of broken, confusing combination of random actions and behaviors.

That visit and that movie had a big impact on me.

I started to believe that a better, more respectful and hopeful way forward was to assume that everyone had the same degree of awareness, however they showed up.

I also started to question why I needed to have a certainty that someone was intelligent and fully present in order to treat them with dignity.

After that visit from Larry, I went on a sort of “autism apology tour,” telling autistic people I knew that I was sorry if I had ever treated them as if they didn’t matter or understand.

I remember a few people kind of nodding and walking away or giving me some sort of affirming noise, which left me convinced that there are more people like Larry in the world.

How many people are trapped in the social ramifications of autism, surrounded by people harboring these outdated assumptions about them?

Larry’s metaphor continues to be one of the most powerful things I’ve ever learned.

Can you imagine what it would be like moving boulders every day, just to get your thoughts across?  What must it be like to experience a total lack of understanding by everyone around you?

Larry went from being someone who I previously would have completely dismissed, discounted and disrespected to somebody that I think of as a black-belt-ninja-Jedi-master-badass-boulder-buster who has honed and disciplined his body and mind in a way that is deeply admirable to me.

In 2015, I was fortunate to visit a few autistic people in Madison, Wisconsin, and their support staff.  All of these people are learning about this emerging story of autism, guided partly by the work of Martha Leary and Anne Donnellan (Autism: Sensory-Movement Differences and Diversity).

Through that visit, I came to understand some people on the autism spectrum as having more of a physical disability, in that their brain doesn’t regulate itself or the body in the same way it does in neurotypical people.  That dysregulation appeared in the way that we see autism:  repetitive movements in the body, which may be a way of the person attempting to regulate, or in some cases, taking a well-earned rest from the grind of “moving boulders.”

Shortly after that visit, a blog post titled “Why I Left ABA” was published.

Reading it was shocking, linking to articles and videos where autistic people describe scary and abusive methods used on them to control their minds and bodies.

I couldn’t help but contrast Larry’s approach, which he chose and committed to of his own volition, to that of ABA therapy, which is forced upon autistic people, sometimes by their own parents in their confusion and hopes for anything that might help.

To me, it seems to be the difference between freedom and coercion, between safety and danger, and between dignity and degradation.

Over the past few years, I’ve been privileged to hang out with a few families who have started down this new path early in their child’s story.  They are investing in Rapid Prompting Method (RPM) and a brave and burgeoning community of families is emerging here in Cincinnati as a result.

Here’s a 60 Minutes story on the first explorers in this world:

And you can check out some samples of the progress people are making here.

They describe it as life-changing.

Young autistic people speak through their letterboards or tablets, typing out their thoughts, slowly “moving boulders” and showing us a brighter and better future.  They talk about hopes and dreams, and they describe the hurts they’ve experienced.

Some of them describe their time in ABA as a form of torture.  Some of their parents have expressed a deep regret in subjecting their children to it, even for a few years, not knowing anything else was possible.

These families still face incredible headwinds. They are footing the bills for RPM themselves because, unlike ABA therapy, RPM isn’t covered by insurance.

And they tell stories of being discounted by therapists and teachers and other social workers, who consider RPM to be a form of voodoo, or, like I initially did with that mother and daughter in Toronto, a fake kind of exploitative puppeteering.

Their judgment is rooted in the same place mine was: in the faulty and mistaken social assumption that autistic people are unintelligent, and in the related and even more disturbing cultural assumption that it is OK to ignore or treat people we perceive as unintelligent poorly.

I recently sat down with an impressive young man who I have come to admire deeply.  It’s impossible not to notice how he moves around a room, with a quick slight dance.  He sometimes twists a length of string in his hand.  His eyes look around the room while we chat and he doesn’t speak in the way that most of us do.

But the words he types are clear and critical for us to hear.

He is concerned for the future of our planet and hopes each one of us can find small ways to make a difference before it’s too late.  He, like Larry, he is deeply intelligent and thoughtful.  Also, like Larry, he faces a world that judges him from the outside, and is quick to ignore him.

Somewhere in one of our conversations, we talked about faith and I asked him if he practiced any particular religion. He responded by typing out that he places his faith in people truly listening to each other.

He then typed “I have noticed a connection between people who easily believe in God, but have a very hard time to believe in me. LOL. ”

I was struck by how profound that insight was, and also how heartbreaking it must be for him, and what a tragic loss it would be if we can’t find a way to create the space for this brilliant young voice to be heard.

In one of our conversations, he typed to his mother “This guy gets me.”  I don’t think I’ve ever had a better compliment.  I’ve worked hard to let go of my own misperceptions and assumptions, and it’s an honor to have that recognized by a black-belt-ninja-Jedi-master-badass-boulder-buster.