Tag Archives: Tracy Thresher

Why Wretches And Jabberers Is Essential Viewing

Posted on May 23, 2013 | 26 Comments

Wretches and Jabberers.  I have written before about this documentary, but I’ve never fully explained why this movie had such a profound impact on me, on my thinking and subsequently on my family.  I will attempt to do that now.

I watched Wretches and Jabberers at the urging of my friend, Ibby last summer.  If a person’s life can be seen as a series of lights, indicating special influencers, Wretches and Jabberers was a beacon.   I knew nothing about supported typing, in fact, I’d never heard of it, so I watched in fascination as both Larry Bissonnette and Tracy Thresher (who are mostly non-speakers and Autistic) typed with their support persons, Pascal Cheng and Harvey Lavoy.  And I wondered whether my daughter might find communicating easier if she typed, instead of being expected to speak.

Larry is a painter, lives with his sister and was institutionalized as a teenager.  He shouts out things like “Bad boy!”  Tracy hits himself in the head when frustrated and has nowhere he can call “home”.  The documentary follows Larry and Tracy as they travel the world meeting other non speaking Autistics.  Again and again the viewer is shown a mostly non speaking Autistic person who has been deemed intellectually incapable by society, only to witness their intelligence and humor break through the silence by typing on a voice activated keyboard or iPad.  And again I thought about my daughter.

It is impossible to watch the film and believe these two men are isolated cases.  One cannot view this documentary and not question one’s preconceived beliefs about intelligence. The film defies the accepted and common non Autistic assumptions about Autism and what it means to be Autistic.  And for me, anyway, it made me question everything I thought I “knew” about my daughter.  All the things I had begun to question, whispering doubts about my thinking that I was no longer able to ignore because of the blogs I was reading written by Autistic people, were now amplified.

I have been interviewing Tracy Thresher for a piece I’m working on that I intend to submit to Huffingtion Post.  In answer to my question about what it meant to him making the film he wrote, “Our film catapulted me to realize my dream of traveling the world to educate, learn and change old attitudes of discrimination toward people of varying abilities. The Larry and Tracy duo illustrates how intelligence is often worked out in a much different way.”

Later in my interview he wrote, “…my mission to show kids and their supports that putting communication to the top of their list of priorities is vitally cleansing to the mind. Releasing deep thoughts is the key to alleviating anxiety. Frustration leads the body to unproductive anger. Being able to show intelligent thought is the path to happier futures and true quality of life, leading to purpose. That is what I sought and found with typing.”

Once again I thought about my daughter and her difficulty with oral language and the frustration that causes her.

Wretches and Jabberers was like an enormous, day glo green, neon sign saying “follow me” on it.  Powerful, funny, poignant, Wretches and Jabberers is essential viewing for all human beings, not just those interested in Autism and parents of Autistic children.  It rattles our unexamined biases, our beliefs, our perceptions and everything we are being “told” about autism, our children and what is and isn’t possible.  And if you are like me, you will think about your child and the world differently as a result of watching it.

One of my all time favorite photographs of Larry Bissonnette taking Emma’s photograph in Tampa, Florida ~ April 2013  (Amy Sequenzia is in the background)

Larry takes Em's photograph

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Posted in Autism, Parenting, supported typing, Wretches and Jabberers

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“Will She Be Okay?”

Posted on April 15, 2013 | 31 Comments

“Will she be okay?”  This was the question that went unanswered for the first nine years of my daughter’s life.  

“Will she be okay?” I asked every autism specialist, neurologist, pediatrician and anyone else who seemed vaguely knowledgable.  This question actually had almost nothing to do with the child I saw before me and everything to do with how I felt.  I so wanted reassurance.  I so wanted and needed someone to tell me she was going to be okay, whatever okay meant.  Whatever world “okay” occupied, I wanted to know, really know that my child was going to be embraced and fully in the “okay” of it all.  

“Will she be okay?”

Like the children’s story about the baby bird who’s fallen from its nest and asks all manner of creatures it meets “Are you my mother?” I desperately wanted someone to put their arm around me and say those seemingly magical and reassuring words – “Yes.  I promise.  She’s going to be just fine.”  But none did. So on I went, searching, trying every therapy, remedy, every crazy combination of vitamins, diets, homeopathy, naturopathy, healer, energy worker, cranial-sacral therapist, shaman, neurologist, developmental pediatrician, speech therapist, occupational therapist who held out the promise that all would be okay if only I did whatever it was they believed would make her “okay”. 

“Will she be okay?”  

When we finally ended our campaign to cure our daughter, our campaign to help her accelerated.  But this didn’t happen in a vacuum.  We had support.  And the support we were given came from other Autistic people. In retrospect, had I known my friend Ibby, I would not have asked “will she be okay?”  Had I met Tracy Thresher, Larry Bissonnette, Jamie Burke, Jennifer Seybert or any of the other people I’ve had the good fortune to physically meet, I would not have felt the need to ask repeatedly whether my daughter would be okay, because I would have known she already was.  That question would not have occurred to me to ask, because these people, many of whom do not speak or more often than not do not speak, or as in Ibby’s case speak, but when stressed, is unable to, are living their lives fully and they certainly know joy.  Each of them has grown up in a society that underestimated them.  All of them have been doubted and had to prove their intelligence over and over to those who are unwilling to see the evidence before them.   

“Will she be okay?”

We, as a society, must stop forcing people we deem different or less than to prove their worth.  We, as a society, must look inward and start asking ourselves, not “will my autistic child be okay?” but “what can we do to accommodate Autistic people so that all can flourish and be included?”

In the end, that’s all I really want for both my children.  I want them to feel a part of a society that supports them. 

“Will my child be okay?”

She IS okay.  Right now at this moment.  It’s up to the rest of us to recognize this.

Em singing “Clumsy” for Ibby and Emily last night

Em's performance 

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Posted in Autism, Autism Acceptance, Parenting

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Trashing Common Misperceptions About Autism

Posted on April 9, 2013 | 46 Comments

“Trashing Common Misperceptions About Autism and Autistic People and Creating a New World” – that’s what I first wrote as the title for this post, but it’s a mouthful and given the limit on characters on twitter, I revised it.

We just returned from Tampa where Richard, Em and I went to a screening of Wretches and Jabberers and to stay with my friend Lauri and her family, or as Em referred to it, “Have sleepover with Henry three.”  Which is an apt description because we spent three nights there.  Four days and three nights of paradise.  Four days and three nights of being with another family and a whole group of friends, new and old who didn’t judge, but rather embraced, a truly inclusive group, coming together, eating, laughing, connecting, talking and typing.  It reminded me a little of my experience at the Autcom Conference this past fall, except it was far more intimate and this time my husband and daughter shared the experience with me.  For four days we were given a glimpse of paradise.   A little peek into what our world could be like, but isn’t…  not yet.

Many people believe, erroneously, that Autistic people aren’t as interested in having friends, developing relationships or crave having mentors as we, non-Autistics.  Those people have never seen Henry’s smile when he is around his mentor and friend, Tracy.

Henry & Tracy@USF

Those people who doubt, didn’t witness Emma’s tears last night when we returned home and she made me promise we would see Henry again and have another “sleepover” with him and his family.  They did not witness Henry and Emma’s laughter and joy from being around each other.

Em and Henry hanging out together by the pool

E&H -Friends

Larry takes Emma’s photograph – perhaps the single greatest compliment a person could receive.  (Amy Sequenzia is in the background.)

Larry takes Em's photograph

They weren’t there to hear Emma tearfully say last night, “Please Mommy.  Go back to Florida tomorrow?  Play with Henry again soon?”

Just because someone cannot or does not express with words their love for another in the way we might expect, does not mean they do not feel it.

Many believe that if a person doesn’t speak, or speaks with a great deal of scripting and echolalia they are not interested in communicating or have little to say.  Those people have never witnessed a typed conversation between those so-called, “non-speaking” or atypical speakers.

Harvey, Tracy, Pascal and Larry, the stars of Gerardine Wurzburg’s documentary, Wretches and Jabberers

H,T, P & L.

Emma, being the consummate performer that she is, could not resist occupying the seat Larry vacated during a break at the University of Southern Florida, the day before the screening, where she wrote for all to read – “My mom and dad hope to meet more people like Larry and Tracy.  Wow(*!)  I am stirring up a crowd(*.)  time to work with people at home in new york to show them it is the intelligent emma there…”  *punctuation was added by me for the purpose of this post and indicates the smile Em gave and the pause she took between typing “crowd” and “time”.

Harvey, Tracy, Pascal & Em @ USF

Em Types@USF

Many people are surprised to learn that even those who do not speak can have wonderfully nuanced senses of humor, can enjoy deep, meaningful friendships, have a great deal to say and are often far more profound than most speaking people are in any given 24 hour period.

A conversation between Tracy, Henry and Emma about getting on board the “inclusion typing train” the night before the Wretches and Jabberers screening.  Tracy is to Henry’s right and out of the picture frame.

H &E type

Tracy, Henry and Emma make a “pitch” to Academy Award winning director, Gerardine Wurzburg who was standing nearby!

Em types

Em takes Gerry Wurzburg’s photo 

Gerry Wurtzburg

Many people assume Autistics have intellectual limitations commensurate with their “severe” and “moderate” labels, yet given appropriate accommodations this idea has been proven wrong again and again.  Yet another reason those labels are not only meaningless, but actually damaging.

Tracy types in answer to a question from the audience about the impact the documentary and meeting monk Hogan has had on his life.

Tracy @ W&J screeening

Many people believe inclusion of Autistics in schools will “bring the other children down” and that inclusion in society will be harmful, when the truth is the opposite with many studies proving this.   (Why this even needs to be proven, is something I am still trying to wrap my mind around!)

Mary Schuh (director of development and consumer affairs at the National Center of Inclusive Education Institute on Disability) and Henry at the Wretches and Jabberers screening at the Tampa Theatre, April 6th, 2013.  Henry is now attending the public school near his home.

Mary & Henry

These are only a few of the beliefs people have when it comes to autism and Autistic people.  Yet, if people were able to witness a weekend such as the one we just experienced, I guarantee their minds would be changed and we would be one step closer to creating a new world.

*Emma approved this post.

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“Presume Competence” – What Does That Mean Exactly?

Posted on March 7, 2013 | 37 Comments

When my daughter was first diagnosed at the age of two and a half, presuming competence was not a concept I was ever told about or had heard of.  And even if someone had suggested we do so, I’m not sure I would have fully understood what that meant exactly.  So what does “presume competence” really mean?  And how and why should we carry out a presumption of competence?

In an interview, Douglas Biklen explained:  ”Assume that a child has intellectual ability, provide opportunities to be exposed to learning, assume the child wants to learn and assert him or herself in the world.”

A key component to presuming competence is to become aware of the prejudice that currently exists regarding autism and how these ingrained beliefs harm not just our children, but ALL Autistic people.   Like any prejudice, based on layers and layers of misinformation, misperceptions, and misunderstandings, we must be willing to acknowledge our own “beliefs” before we can begin to deconstruct them.

When my daughter was little with almost no language I could not understand how it was possible for her to learn to read and write if she did not speak first.  I was surprised and confused when I learned how completely wrong I was.  When I read about all the non-speaking Autistic people who had learned to read and write despite being given no formal instruction, it seemed magical to me.  This mind that seemed, from my limited perspective, to not understand so much, actually was taking in far more than I could imagine, let alone believe.  It wasn’t until I was able to see my own limitations caused by the things I had been told about autism and hence, my daughter, that I was able to move beyond that thinking and embrace another way of thinking.  I had to acknowledge my misperceptions and the misinformation I was given, then I had to question everything I thought I knew and was being told.  I had to seek out Autistic people who were kind enough to share their own experiences before I was finally able to dispense with my erroneous ideas and move beyond them.  In case anyone’s missing it, there is a certain irony in my early assumptions regarding Autistic competence.

At the Institute on Communication and Inclusion conference, which we’ve just returned from, and I began writing about in yesterday’s post, Tracy Thresher typed, “… couldn’t let anyone know I could read and I understood what was said to me the training gave me the way to communicate with others.”  On the Wretches and Jabberers website, Tracy wrote, “My communication is paramount to my well-being and is key to my being an active citizen.”  He goes on to say, “I may appear to be a man shrouded by a cloak of incompetence but if you will take the time to listen to my typing you will understand I am intelligent.”

What I have come to understand, is that a presumption of competence is much more than a set of beliefs, it is a way of interacting with another human being who is seen as a true equal and as having the same basic human rights as I have.

A presumption of competence may seem like a leap for many non Autistic people,  it may even feel like a disconnect.  Some may argue that their non-speaking child cannot possibly understand, that they know this beyond any doubt and I must ask, but how can you know this for sure?  We may tell ourselves that our child is too “severe” and we are setting them up for certain failure by presuming competence.  To these people I would suggest the opposite is true.  The only true failure is when we walk away and assume incompetence.

Presume competence means – assume your child is aware and able to understand even though they may not show this to you in a way that you are able to recognize or understand.

To presume competence means to assume your child or the other person does and can understand when they are being spoken of and to.

Presume competence means talk to your child or the other person as you would a same age non-Autistic child or person.

Read and have available age appropriate stories and give access and instruction to age appropriate learning material.

Presumptions of competence means treating the other person with respect and as an equal without pity or infantilization.

It does not mean that we will carry expectations that if not met will cause us to admonish, scold or assume the person is being manipulative or just needs to “try harder”.

To presume competence does not mean we assume there is a “neurotypical” person “trapped” or “imprisoned” under an Autistic “shell”.

Presuming competence is not an act of kindness.

Presuming competence is not something we do because we are a “good” person.

We do not get to pat ourselves on the back because we have presumed competence.  If we believe we deserve a pat on the back and/or acknowledgement, then we are not presuming competence, we are more likely being condescending.

One last thought regarding presuming competence…   to presume incompetence is to actively do damage.  Let’s all agree not to do harm to our fellow human beings.

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The Problem With “Scientific Studies” and Typing With Emma

Posted on November 19, 2012 | 9 Comments

Last week the first part of my interview with Peyton and her mother, Dianne Goddard was published on the Huffington Post.  Click ‘here‘ to read it.  This portion of the interview was about the horrific abuse Peyton experienced at the hands of two people who were related to her and meant to care for her.   The interview is an astonishing example of forgiveness, but a couple of the commenters questioned whether Peyton had, in fact, written the answers to my questions herself and presumably those same people also doubted whether Peyton was the true author of her book, i am intelligent.  Disbelief, despite the fact that before the book was conceived, Peyton wrote about her abuse and it was confirmed by the two people who abused her.  An abuse that was done in secret; an abuse so horrific it defies the imagination; abuse that went on for a very long time and was known by  none, other than Peyton and those who abused her.

Last Friday I decided to devote a post to FC, you can read it ‘here‘ and while none argued against FC and those who use it here on this blog, one of the commenters on the Huffington Post piece wrote, “I am just relating the controlled scientific studies on FC.  I am saddened that people chose to publish personal information and discount scientific data to mislead the public.”  As I read this I thought, but therein lies, at least part of, the problem.  This IS personal to many, many people.  For those who use facilitated communication it is the difference between being able to communicate and being in this world in a way that is not available to them otherwise.  It means no longer living a life in silence and feeling isolated, it means connection and it can mean the difference between being institutionalized or not.  For those people and their families, FC makes all the difference in the world.

As I reflected on all of this and the swirling debate surrounding the legitimacy of FC as a “valid” form of communication I wondered about the term “scientific study”.  What exactly constitutes a scientific study, what is the criteria for such a study, what are the guidelines?  I found this site from the USDA and there’s this on Judging Criteria for Scientific Research and this, Understanding Scientific Studies where I read, “The scientific process is a road of discovery. It is the process of gaining knowledge about the universe through the observation of measurable evidence. Contrary to what many people  believe, this ‘road’ is not  a straight, smooth motorway: researchers may take different directions of exploration, going down routes that twist, turn, and sometimes even backtrack or come to a dead end, before the facts are uncovered. Even then, the facts uncovered may be only part of a larger, partially understood phenomenon, which requires further research  before we come to  more complete answers.“

To return to the question of FC there is much more to be learned.  The studies that have been done to date -  Investigation of authorship in facilitated communication, Contested Words, Springlink an Evaluation of 8 Studies, Facts About Facilitated Communication, A History of Facilitated Communication and A Validated Case Study of Facilitated Communication show the wide array of “scientific studies” and the resulting conclusions which range from, FC is a hoax to Facilitated Communication is a valid form of communication.  Reading any one of the above links I’ve provided makes a compelling case for or against the use of FC.

And yet, for those of us who have personally seen FC used by people like Tracy Thresher, Larry Bissonnette and countless others I can say without a doubt that they are indeed speaking for themselves.  I can recount my own experience with my daughter who learned to write and type with hand over hand support that was gradually lessened with time as she showed a greater ability to write and type independently.  Today she no longer requires any support at all, types with her two index fingers, sometimes without looking at the keyboard and hand writes unaided as well.  However there are people who, because of their physical disabilities, cannot do this, may never be able to do this, and so for them, a facilitator will always be necessary.

For those who question the validity of FC, by all means, read the many studies, educate yourself.  As Amy Sequenzia once said to me, “it’s okay to be skeptical.”  However in the case of FC there are enough “scientific studies” that conflict and in the end only prove that some people are communicating using FC and their lives have been transformed as a result and others have not been as fortunate.

For any who are interested, here is a video of Peyton using FC that she and her mother sent me.

This was a typed “conversation” I had with Emma yesterday.

Me:  Hey Emma let’s type together!

Em:  Happy birthday der Emma.

 Me:  Em, your birthday is in January, but you are thinking about your birthday now, right?

 Em:  Happy birthday.

 Me:  We’ve been talking about your birthday a lot lately.  It’s exciting.  We are planning to go to a hotel with a swimming pool for your birthday and then to Elite Gymnastics for your birthday party. 

 Em:  And take a taxi.

 Me:  Yes, we will take a taxi!

 Em:  To go to that now howtel.

 Me:  Right!  We will take a taxi to a hotel and we will spend the night there.  All of us will go there together.

 Em:  Yes,  we will take a taxi to go to that new hotel has a pool.

 Me:  Yes.  We are going to find a hotel that has a pool.  I know that’s what you want the most; a hotel with a pool.

 Em:  Go in your room.

 Me:  Then what?

 Em:  Get are batigsot on take the elvalr up to the rof and go swimming in the pool.

 Me:  Yes!  We can go to our room, get our bathing suits on, take the elevator to the pool and go swimming in it.  That’s a great idea.  That sounds like so much fun!!

FC users Larry Bissonnette and Tracy Thresher (with his facilitator Harvey Lavoy) at the 2012 Autcom Conference 

Tracy types during the Q & A at AutCom Conference 2012

 

Movie trailer of Wretches and Jabberers

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AutCom 2012 Conference – The Best Kept Secret

Posted on October 8, 2012 | 44 Comments

The Autcom conference was a fleeting glimpse into paradise.  A tiny taste of how the world could be were we accepting of each other, treated all people as equals and with respect, without prejudice, without assumptions, without bias.  Autcom was a window into how the world could be, but isn’t.  Not yet.  Words do not do this conference justice.  How could they?  How do you describe a room full of people who are connected not through race, nationality, religion, political views or neurology, but instead are connected by an idea.  A vision.  How do you describe that?

Accommodation – it’s a word we hear, but what does it really mean?  At the Autcom conference it meant waving hands at the end of a presentation instead of clapping, lowered lights, snacks that included gluten-free and casein free items and non dairy alternatives.  Accommodation meant no one stared disapprovingly at anyone who stimmed or made noise or got up to leave in the middle of a talk.  Accommodation meant people were polite and moved chairs that might be blocking someone’s ability to come or go.  It meant using a microphone or repeating a question for those who weren’t able to hear the first time.  It meant being respectful and considerate when someone came up to peer at your name tag and it meant understanding that when that person gently touched your hand after a presentation it was their way of thanking you and I defy anyone to not see the beauty and love in that.  Accommodation meant slowing down while someone typed their answer or question or thought.  It turns out accommodation means being a thoughtful, considerate human being who is respectful of others.  How is it this isn’t done automatically, as a matter of course.  How is it that we as a society have drifted so far from this very basic and easy way of being in the world?

The single biggest issue I had with this wonderful conference was that there were too many terrific things going on at once and it was impossible to see and hear everyone and everything.  To give you an example of this – on the first day of the conference after Ari Ne’eman’s welcome and an opening keynote address by Jennifer Paige Seybert, was Savannah Nicole Logsdon-Breakstone’s presentation – Loud Hands Project’s Neurodiversity 101.  At the same time, Larry Bissonnette, Pascal Cheng, Harvey Lavoy and Tracy Thresher were doing a presentation on Supported Typing, which I really needed to go to in order to assess whether this might be something we could use to help Em communicate more effectively, but next door to them was Nick Pentzell, Hope Block, Jacob Pratt and Autumn Dae Miller presenting “Rated “R”: That Oh-So-Difficult Topic”.  I cannot tell you how much I wanted to hear them too and later heard from others that it was a not to be missed presentation, sadly though, I missed it.  Human Development Journey was presented by Cecilia Breinbauer about using DIR, which was the method Richard and I were trained in by the late Stanley Greenspan, after abandoning ABA.

Ari Ne’eman

Jennifer Paige Seybert

That evening after dinner and a wonderful performance by Jordon Ackerson who reminded me of Emma because of his beautiful voice, we watched Wretches and Jabberers, with a Q&A with Larry and Tracy.  This was my third time watching this documentary, which I posted about last month ‘here‘.   I asked them about self-injurious behaviors, something both engage in during the film.  I asked for  their opinion about the commonly held belief by many that SIBs should be thwarted and how parents and caregivers are often unsure how to deal with this.  Tracy typed, “That was years of frustration with no way to reliably express myself working its way out through my behavior the problem was lack of communication which pissed me off.”  Larry typed, “I lived in an institution so I was locked in arms of restraint its legal but immoral and only represses anger nothing looks more kind than softly spoken words and lit up smiles.”

Jordan Ackerson

Tracy Thresher

Larry Bissonnette

Read that again.  ”… nothing looks more kind than softly spoken words and lit up smiles.”  The presentations were terrific, but it was what is possible that this conference represented, which affected me most profoundly. The AutCom conference was an example all organizations, who say they are interested in Autism and helping those who are Autistic, should follow.  Autistic people make up a large portion of their board, Autistic people led more than 50% of the presentations, the audience was at least half Autistic, if not more.  At my presentation there were more Autistic people than not, for which I was truly honored by.  The conference showed what the world could be like if we work together, reach out to each other, include everyone despite our perceived differences with love, compassion and kindness.  Accommodation is less about accommodating and more about getting in touch with our humanity and what it means to be alive and sharing this planet together.  Accommodation and inclusion means we ALL benefit.

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The AutCom Conference – Baltimore

Posted on October 5, 2012 | 8 Comments

I am in Baltimore at the AutCom Conference.  Since the conference begins first thing in the morning, I arrived yesterday afternoon by train.  As I waited for the shuttle service to arrive I witnessed a group of men yelling at each other.  Suddenly one enormous man lunged at another, grabbed him by the throat and began to strangle him.  Several other men jumped in, amidst lots of yelling and swearing and finally were able to pry the two apart, only to have the one who had been strangled race after the strangler, shouting descriptive words which I cannot repeat, mostly because other than a few F bombs, I couldn’t figure out what he was saying, though by the look on the attackers face, they weren’t friendly.  After witnessing two men practically killing each other, I was greatly relieved to see the shuttle pull up to whisk me away.

The van driver stopped only once to pick up a party of six elderly men who were off to a business retreat.  The one gentleman seated next to me after having an animated conversation with his wife, though I’m not sure about her identity, but was clearly someone he knew well and felt comfortable hanging up on – twice –  and then called back.  Exhausted from all that, he promptly fell asleep listing so precariously in his seat that I feared he might just keel over completely.   I scooted as far away from him as was physically possible lest he fall into my lap like a felled Redwood.

The drive was otherwise uneventful. Much to my delight the hotel looks out on a beautiful lake where I saw this… I believe this is a White Egret.  I could be wrong, but in Northern California, where I grew up, I remember seeing one once and it looked a great deal like this.

A panoramic view of the lake.

Sculpture with the lake in the background…

The conference begins at 9:00AM this morning with a welcoming ceremony by Ari Ne’eman, followed by a keynote address by Jennifer Paige Seybert.  I intend to then go to Julia Bascom and Savannah Nicole Logsdon-Breakstone’s presentation – The Loud Hands Project.  However Larry Bissonette, Pascal Cheng, Harvey Lavoy and Tracy Thresher (of Wretches and Jabberers) are also presenting at the same time, and I’d love to hear them too.  The entire conference is a who’s who of wonderful presenters.  I don’t know how anyone is able to choose!

It’s all very exciting and I’m so happy to be here!

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Wretches and Jabberers – Defying Labels

Posted on August 29, 2012 | 36 Comments

A few months ago, my friend Ib, gently encouraged me to watch the documentary Wretches and Jabberers.  It’s available on Netflix and iTunes.  I was traveling at the time, Richard was in Colorado, I was in NYC.  In addition I can’t be bothered with the four different remote controls required to watch anything on our TV, let alone find a specific movie, put it in the queue, figure out which remote(s) to use, download the movie and watch it.  Yeah.  I know.  When I see a TV, anywhere (unless it’s already turned on) I automatically walk away.  It’s like a Pavlovian response at this point.  If I’m home alone or just with Em, the TV screen stays dark.  And I’m totally f*cked if Em wants to watch something and presses the wrong button by mistake.  My 12-year-old son, Nic, has been known to pat me on the head and say in condescending tones, “Aw… Mommy.  It’s okay.  Let me help you with that.”  Really.  This has actually happened.  Several times.   So, yes, it took me awhile before I finally was able to watch Wretches and Jabberers with Richard on Netflix.  I cried.  I laughed.  Wow, what a documentary!  I’ll wait here while you go to the above link and put it in your queue.

Larry Bissonnette and Tracy Thresher are predominantly nonverbal Autistics.  Larry is a painter, lives with his sister and was institutionalized as a child.  He hits himself in the head when frustrated.  He is echolaic.  Tracy is homeless.  He has places he is able to go for a few nights here and there, but there is nowhere he can call home.  Both Larry and Tracy communicate through facilitators by typing.  The documentary follows them as they travel all over the world meeting other nonverbal Autistics.  The film defies the accepted and common neurotypical views and assumptions about Autism and what it means to be Autistic.  Powerful, funny, poignant, it is essential viewing for all human beings, not just those interested in Autism, because it rattles our unexamined biases, our beliefs, our perceptions and everything we are being “told” about autism.

A terrific discussion took place in the comments on yesterday’s post.  The whole issue of mentorship and hf/lf (high functioning / low functioning) was brought up.  One person mentioned how “our functioning level should be based on how we treat our fellow humans not whether someone judges another’s way of communicating or perceiving the world as correct, or less or greater than another’s.”  Her remarks made me think about the neurotypical world.  What if each of us were given a functioning label?  What if our lives, our abilities were reduced to a set list of priorities.  Let’s say each of us was given a “critique” of our ability to meet that criteria?

If I was put under a similar magnifying glass as Autistics, it could be argued (of course all of this is subjective and that’s the point) I would fall into the moderately functioning category for neurotypicals depending on the set of agreed upon priorities.  I do not hold any position of power.  I write a blog for which I earn not a single cent.  I publish occasionally on the Huffington Post, again, I am not “employed” by them, I submit pieces, they publish them, no money is paid for those pieces.  I am mother to my two children, I do my best to care for them, but I do not “make money” for the privilege of having two children.  I have my own business, I make a decent living (for a great many years I did not and barely was able to pay my rent.)

I flounder in the face of tests.  I score poorly on most of them unless I have taken the time to study the material to ensure I am able to breeze through and even then I tend to make mistakes.  I freeze up when I feel nervous or stressed.  My vocabulary can be spotty, particularly when in stressful situations, I go off on tangents, I have difficulty writing a standard 5 paragraph essay.  I shut down completely in the face of mathematical word problems.  I use lots of adverbs, sometimes I change tenses in the middle of a sentence.  Sometimes it’s hard for me to stay on track.  I’m terrible at most cocktail parties.  My interest in cocktail conversation wanes after the first 5 minutes.  I have a passing interest in the weather, a favorite topic at such events.  I have special interests that I can go on and on and on about.  I cannot remember people’s names.  I’m marginally versed in social networking.  I dislike most TV.  I cannot stand any show with the word “housewives” in it.  I am extremely sensitive.  I make social faux pas (what is the plural of faux pas?) often.  I am not patient.  I am a terrible liar.  The list goes on and on.

We neurotypicals are not held to the same scrutiny our Autistic brothers and sisters are held to though.  We don’t have to worry that we will be slapped with a functioning label, which will be prominently placed on our resumes.  But what if we were?  I doubt we’d sit passively, without resistance and “accept” this kind of limited categorization.  I think many of us would protest vehemently.  I think many of us would rise up, organize protests, argue for our rights as human beings, we would advocate for ourselves, we would fight,  just as gays, African-Americans, Women and now…  Autistics are.

Emma – 2008

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