Tag Archives: prejudice

Discrimination

In Emma’s RPM session yesterday with B. on the topic of discrimination, Emma wrote, “Autism voices have been silent.” (Emma initially typed “silenct and then she edited that to “silent”.)   B. encouraged her to write more, asking her what she suggested.  Emma wrote, “take time to try and learn from us instead of staring at us like we are garbage.”

When she wrote the word “garbage” I felt sick to my stomach. This, from my twelve-year-old daughter.

I remember when my father would call me into his home office to scold me for my latest infraction.  I remember the shame I felt.  I still remember the tingling feeling of rebellion mixed with self-doubt when I noticed the disapproving stare of a stranger upon seeing my outfit – a crop top and pair of cut-offs that I’d smuggled into my backpack to wear to go shopping with a friend after school.   There was shame then too.  But stares like I’m garbage?  No.  I don’t know what that’s like and yet, my twelve-year-old daughter does.  Twelve years old.  Evidently she knows this feeling all too well, as there was no hesitation when she wrote that sentence yesterday.  It wasn’t like she had to stop and think about her answer.  She didn’t pause before pointing to the letter “g”.

take time to try and learn from us instead of staring at us like we are garbage.”

B. had been talking about Martin Luther King.  She had spoken of the civil rights movement and quoted a few things Martin Luther King said.  Emma immediately wrote about autism.  No hesitation there.  I can’t really console myself with the idea that racism and discrimination are no longer an issue in the United States and therefore the prejudice Autistic people encounter will change any time soon as well.  The language has been cleaned up, people know not to use certain words, but the feelings, the feelings of bias, the violence that prejudice and oppression encourage continues.

“take time to try and learn from us instead of staring at us like we are garbage.”

Emma ~ 2010

Emma ~ 2010

Prejudice & Autism

Emma and I have been discussing the civil rights movement and the events throughout American history that led up to it.  We’ve discussed the word segregation and what it means to a society when we isolate a group of people and how people come to form opinions about other people they’ve never met.

We have discussed the word prejudice  and how it is preconceived opinions based on an idea rather than factual.  We’ve talked about how those preconceived ideas almost always do harm.  We’ve discussed oppression and how many who’ve been oppressed internalize that message and how it changes how they then view themselves.

Emma has asked to read a biography of Harriet Tubman and we have been discussing the importance of Rosa Parks and her decision to not give up her seat on a crowded bus in Montgomery, Alabama.  We have not yet talked about Martin Luther King, Malcolm X or Thurgood Marshall, though Emma wrote that she has heard of the first two, and for all I know, may know of all three.

When I asked Emma to write something about Harriet Tubman, she wrote, “defender of freedom.”  This was a couple of months ago and I was shocked because the only time I’d mentioned Harriet Tubman to Emma was about three years ago.  I had read one of those beginning readers to Emma about Harriet Tubman before bedtime. And while I always hoped she might be listening, even if only a little, I wasn’t convinced she understood what I was reading.  This was during those years before I realized Emma understood everything.  It was during those years when I believed what I was being told, that my daughter was only able to understand the most basic concepts, and even those, it was often questioned just how much she understood.

Prejudice is when we form opinions about people, that are not based in fact. Prejudice makes us blind, it twists our minds into thinking we understand or know, even when we do not.  It can make us deny facts, or decide that what is true, is not real.

As Emma never indicated that she was listening, much less taking everything in, I often wondered.  But a couple of people had encouraged me to “act as if” and so I did my best.  I remember when I read the biography of Helen Keller and later she asked me to read it to her again.  Still, despite the now obvious evidence, I doubted and even when I wasn’t actively doubting, I wondered.  Often.  It was as though I could not make the mental leap to believe what increasingly seems obvious in retrospect.  Prejudice is like that, it fools us into believing we understand things about a group of people that we do not.

As James H. Cone writes in his book Black Theology & Black Power – “How should I respond to a world which defines me as a nonperson?”  And later in the same book, he writes, “A man is free when he can determine the style of his existence in an absurd world; a man is free when he sees himself for what he is and not as others define him.”

Emma in Colorado - 2010

Emma in Colorado – 2010

Autism and Human Rights

Peyton Goddard gave the keynote address at the 2013 TASH Conference in Chicago on December 11th, 2013.

You can watch, hear and read a transcript of her speech ‘here‘.  Peyton does not speak, but instead types to communicate.  I was fortunate enough to be in attendance at the TASH Conference and hear her speech.

“Understated and devalued, I was segregated and secluded, walled-in for controlling decades, and repeatedly traumatized by bullying abusers.”

Peyton describes her existence prior to learning how to communicate through typing.

“I’m less. I’m freak. I’m throwaway trash. Daily, for decades, I try but cannot be the person you want me to be.”

“Your answer was to fix me, to change me to be what you feared not. To cure me of being ME. I reply that YOU were less than I needed.”

Read that again – “I reply that YOU were less than I needed.”

“Segregation is the beast whose bite cheats us all. The isolation of people different renders you and me strangers. Reality is that you are me and I am you.”

At the crux of any prejudice is the idea that “I” am different, separate and, ultimately “superior”.  To live with this delusion, we must keep ourselves apart from those we believe “inferior”.  If we live together, in a world that embraces all humans, we lose our superior/inferior status.  This is the world I strive and hope for.  This is the world I want my children to inhabit.

*For more of Peyton’s wisdom, read her book, I am intelligent.  I interviewed Peyton and Dianne for the Huffington Post.  You can read that interview ‘here‘.

Peyton and Dianne Goddard ~ TASH 2013

Peyton and Dianne Goddard ~ TASH 2013

An Interview With Emma About Stimming

What follows is an interview I conducted this morning with Emma about stimming.  Emma patiently tried to explain to me what stimming is like for her.  

A:  Is it okay to ask you some questions about stimming?  (For those of you unfamiliar with the term, stimming is a repetitive action or verbal output.)

E:  Stimming is fun.  And I am in calming and obedient service to those who are in charge.

A:   Are you being facetious when you write “obedient service to those who are in charge?”

E:  (Smiles)  Yes.  (Laughs)  The stim is a great way to roam around feelings that are too intense.  You treat me like a baby.”

A: Are you speaking specifically to me or are you using a more universal “you”?

E:  All people out there.  Bloated feelings despair and anger me.  Almost all feel too much to manage and I cannot be present all the time.

A:  Can you tell me more about stimming?

E:  I am not able to write about stimming because words cannot describe it.

A:  Can I ask some specific questions about it though?

E: Yes.  (Leans over and gives me kisses on my cheek.)

A: Is stimming ever not fun?

E:  Yes.  When feelings are too extreme, even a good stim won’t help.

A:  Is there anything that will help?

E:  A lot of patience and love.  Acknowledge my attempts to self-care and do not cause me more pain by trying to change or control me.

A:  What happens if someone stops or tries to stop you from stimming?

E:  It makes thick feelings worse.

A:  Do you ever feel stuck in repetitive loops?

E:  Yes, but so do others who are not autistic, but they are called passionate and are looked up to instead of looked down on.

A:  Yesterday you wrote: “Raging beasts of pain masquerading as stims cause many to misunderstand.”  Can you elaborate on that?

E:  Stims alter the persistent anxiety of life so that I am able to function as well as I am.

A:  So you weren’t saying stims are painful as much as that they help you cope with the pain and anxiety you often feel?

E:  It is impossible to describe to all who have not experienced a lot of distress.  Day after day I am scared of people’s opinions about me because they can harm me with their beliefs about my lack of intelligence.  People treat those they believe stupid, very badly.  I am not stupid.

A:  I know you aren’t!  You are the smartest person I have ever met!!

E:  (Smiles and squeezes my arm.)  I am intelligent and cannot speak with the same brilliant words that are in my mind.

The timer goes off.

E:  Now we are all done!

A: Yes we are!  Thank you Emma for your patience with me and helping me understand.

Addendum:  I asked Emma just now if I could ask her one more question.  She told me that I could.

A:  Do you like the word “stimming” ?

E:  No.

A:  Is there another word you’d prefer?

E:  Yes, but words are not as meaningful to me as they are to those who talk all the time.

A:  If you could choose any word other than stimming, what would it be?

E:  Self-care

Em with her string!

Em with her string!

A Letter To You ~ By Emma

I asked Emma whether she wanted to finish the story she began about an otter or talk about something else.  She wrote:

“I want to talk about the New Year.

“This is a meaningful year because I am beginning to write about my ideas about autism and how people need an education in applying what Autistic people feel.

“Fear is non-living.  It cripples the mind and deadens the soul.  Raging beasts of pain masquerading as stims cause many to misunderstand.

“I am not without thought.  My forever beautiful mind needs nourishment all the time.  Autistic people are left to linger in a secluded world by those who could be helping instead of harming them.

“Please care enough to alter how you interact with those who may seem different than you, but who are actually the same.  We are all beings with similar feelings and hopes.

“Do not believe your fears.  They will lead you the wrong way.”

Emma told me she wanted me to publish this on the blog today.  Emma turns twelve this month.  I have spent more than fifty years learning what she already knows.  Em & Ariane on New Year's Eve ~ 2013    Em & Ariane on New Year’s Eve ~ 2013

 

Shifting Our Beliefs

“It’s a simple program, but it’s not easy.”  These were the words I remember someone saying to me during those first few weeks so long ago when I entered a 12-step program.  As with most of the things people said during those first few years when everything was still a blur, I heard the words, but didn’t really understand or care what was meant.  Not really.  The slogans seemed trite and silly. I heard them, I read them, but I didn’t pay much attention to them other than to make fun of them.  And then as the days of not acting on my addictions piled up and my head began to clear, as life continued along and I with it, I started to make sense of this phrase and so many more that were said during those early days.

Like everything in life, things are rarely how I expect them to be.  The years since I walked into those recovery rooms have not unfolded as I thought they would.  I am not doing what I imagined I would be doing, my life does not resemble the life I once led nor does it resemble the life I imagined for myself.  All of it comes as a surprise.  Perhaps the biggest is how much I have come to love so many of these slogans that I once viewed with contempt.

The things I learned in those early days of recovery are things I continue to apply to my life now:   “Take it easy,”  “Keep it simple,”  “Practice the principles in all our affairs,”  “Circumstances do not make us who we are, they reveal to us who we are,” “Don’t curse the darkness, light a candle,”  “Compare and despair,”  “We’re responsible for the effort, not the outcome,” “Change is a process, not an event,” “resentment is like drinking poison and hoping the other person will die,” “sorrow is looking back; worry is looking around; hope is looking forward,” “serenity is not freedom from the storm, but peace amid the storm,”  “F.E.A.R. – False Evidence Appearing Real.”

There are too many program slogans to list here, but almost all of them can be applied to every aspect of my life today, particularly when it comes to autism.  There is so much that I feel discouraged by when it comes to autism, what is said, what we are told, what is believed to be “true”.  As I continue to learn, as my daughter continues to write, the farther away we drift from the commonly held beliefs about autism and my child and friends who are Autistic.  I read articles written about autism and Autistic people and I recognize none of my friends, daughter or anyone I know.   The articles and views seem completely disconnected from reality.  I read what so many other parents say and I have to remember to remind myself that I once believed these things too.

Recently someone sent me the link to a book review of Naoki Higashida’s book The Reason I Jump.  The review was written by someone who works in the field of autism and yet was incredulous that Naoki talks with such insight about his social interactions, speaks of feeling ashamed when his body does not cooperate with his mind.  The reviewer wonders aloud what (if any) the implications are for others who are non-speaking and Autistic.  Of everything written about Naoki’s book, this was the review that has continued to haunt me.  Here is someone who has spent his life researching and working in the field of autism and yet, Naoki’s book comes as a surprise.  How is this possible?

It’s possible because those who are in the field have been given incorrect information and then look for verification that align with what they’ve been told.  Yet this bias is not how research should be done.  Until we are willing to accept the idea that maybe, just maybe what we believe to be true is not, we will not be able to believe anything different.  And as a result all of our Autistic children, friends and people will suffer the consequences.

Emma – 2003

*Em 2003

Facing the Skeptics

It’s snowing.  In New York City.  Right now.

“Look Daddy!  It’s snowing!”  Em said this morning.

There’s nothing particularly spectacular about that comment, except to us, it’s not only spectacular, it is exciting and yet another example of how my husband and I continue to underestimate our child.  (This is less a criticism of us and more a statement of fact to illustrate a larger point.)

“Em, do you know who the president of the United States is?”

“Yes,” she spelled out.

“What is our president’s name?”  I asked.

“Barak Obama,” she spelled.

“Do you know our vice president’s name?” I asked, thinking this might be taking things too far.

“Yes,” she spelled again.

“What is the name of our vice president?” I asked.

“Biden,” she wrote matter-of-factly.

“Communication is the most essential use to which spelling should be devoted.  It should not be used as a test or an exhibition piece.  Try being confined to a sentence a week and see h ow you feel about using that sentence to answer some stupid question about whether you live in St. Nicholas.  If Rosie had spent all her time giving tests we would not have had time to use spelling for our own communication.  Crushing the personalities of speechless individuals is very easy: just make it impossible for them to communicate freely.” ~ Anne McDonald from the book Annie’s Coming Out

This is what we are striving toward.  Annie’s comment here is one I have read and reread and yet find so difficult to apply because I am in a near constant state of disbelief when it comes to all that my child is capable of.  I write often about presuming competence, I write about how we dehumanize Autistic people with the language that is commonly used to describe them.  I write about how important it is to treat all people as equal.  I talk about human rights and how the rights of those who are Autistic, particularly those who do not speak reliably or at all, are dismissed, ignored or simply not acknowledged.  And yet I underestimate my child’s ability constantly and without meaning to.

On a daily basis she writes something that blows my mind.  EVERY DAY.  Read that again.  Every.  Single. Day.  It’s like living in an alternate universe.  Every day I feel excited to know what the day will bring.  Every day when I sit down with her I am prepared to feel that mixture of excitement, surprise and overwhelming gratitude.  Every day I think, will I ever stop being surprised?  How long will it take?  I don’t know.  But here’s what I do know – everyday I am overcome with emotion, respect and profound joy in  all that is my daughter.  I am sincerely grateful to read what she tells us, and grateful to all the people who have made it possible for her to do so.  Grateful doesn’t cover the emotions, but it’s the best I can do at the moment.

Yesterday in her *RPM session (follow this link to read more about RPM, which is not the same as FC or facilitated communication, though there is some overlap in that they both presume competence and treat the person with the respect most of us take for granted) she was asked, “What else has an engine?”

Emma spelled out, “Lets say leaf blower.”

My smile was like the Cheshire Cat’s, from ear to ear.  Leaf blower?  I LOVE that!  And later she asked for a clarifying question and then wrote a wonderful answer to a question about what changed once we began using automatic train engines.

“Until I could prove that they were intelligent nobody would come and assess them.  Guilty until proved innocent.  The children were profoundly and hopelessly retarded until they could prove they were intelligent.”  ~ Rosemary Crossley from  Annie’s Coming Out

“It was simply too threatening; my discovery questioned the basic assumptions on which care was offered…”  ~ Rosemary Crossley from Annie’s Coming Out

My daughter is one of hundreds of Autistic people who are writing and typing to communicate and in doing so she is proving every day how extremely gifted she is.  We are at the very beginning with all of this.   There are others who are far ahead of us, those who have published their thoughts, with more being published all the time.  Incredibly, what Rosie experienced, those deeply held prejudices back in the 1970s, continue to flourish today, now more than thirty years later.

“This was one of our standard problems:  people who doubted the children were always so sure of themselves that they openly expressed their skepticism in front of them.  It did not occur to them that if they were wrong they were terribly rude, and that they were making it very difficult for the children to respond to them.  How do you talk to someone who tells  you that they are convinced that you cannot talk?  What are they going to ‘hear’ when you try to talk?” ~ Rosemary Crossley from Annie’s Coming Out

We are living in a time when more and more parents, educators, people who work with Autistic people and Autistic people are facing the skeptics.  We are offering continued proof of our children’s and Autistic people’s intellectual gifts, indisputable evidence of all they are capable of.   My daughter is but one of a great many.  As long as she gives me her permission, I will continue to report some of what she is saying here while hoping that one day soon she, and others like her, will no longer be placed in  the insulting position of having to prove their vast intelligence, and themselves, to anyone.

Rosemary Crossley and Anne McDonald

Unknown

The Way We Treat Others

There is no other life than this one.  It doesn’t matter what one believes regarding death and the after life, this is the one life we have, right here, right now.  How will we live it?  What we do, what we say, how we behave in this moment is indicative of how we do anything.

I’m reading Rosemary Crossley’s first book, Annie’s Coming Out, which she wrote with Anne McDonald and was made into a movie in the 80’s, released in the US under the title, “A Test of Love.”   (As a side note, I find it interesting that the book’s title places Annie as the protagonist and yet the US film title suggests the therapist is.  By the way, I’m one of the people who believes both Anne and Rosemary were/are heroic and have nothing but tremendous respect for both.)

“Children, even children who could sit up, were generally laid down to be fed.  Their heads would rest in the nurse’s lap, and their bodies would lie across another chair placed in front of her knees.  This meant children were being fed with their heads tilted right back, a method called, for obvious reasons, ‘bird feeding’: gravity drops the food straight to the back of the throat, and there is no chance to chew.  Children were encouraged not to shut their mouths – a second mouthful immediately followed the first.  I have filmed a nurse feeding a child:  food is piling high on his face because he is unable to swallow it at the rate the nurse spoons it in.”  ~  Annie’s Coming Out by Rosemary Crossley and Anne McDonald

The above is, but one of many harrowing passages in the book describing the institution Anne McDonald was placed in when she was three years old.

“To be imprisoned inside one’s own body is dreadful.  To be confined in an institution for the profoundly retarded does not crush you in the same way; it just removes all hope.”  ~ Anne McDonald in the book Annie’s Coming Out

It is impossible to read this book and not feel horror.  Horror at our ignorance, horror that a place like St. Nicholas Hospital was more the norm than not, horror for all we didn’t understand or know, horror for our capacity as human beings to treat one another with such indifference and cruelty.  It is easy to console oneself with the thought that this happened more than thirty years ago and this sort of thing would never happen now, not here in the United States, not now.

This article in the NYTimes was written just last year, I wrote about it and other atrocities ‘here‘.

How will we view the “treatments” commonly used with Autistic children thirty, forty years from now?  What will we think about the commonly held views regarding autism and Autistic people.  Will we look back with the same horror I feel as I read Annie’s Coming Out?

Anne McDonald and Rosemary Crossley

Anne-Mcdonald2-200x0

Humanity

“Please try to remember that what they believe, as well as what they do and cause you to endure, does not testify to your inferiority but to their inhumanity and fear.” ~ James Baldwin from The Fire Next Time

If there is one thing I want my Autistic child to know, it is this idea written by James Baldwin.  He was writing about race, but his words apply to any who have been on the receiving end of prejudice.

I think about my father a great deal.  A proud, athletic man who broke his back in a horse back riding accident which eventually forced him to rely on a wheelchair to get around.  My father used to call me every Sunday.  We would chat about things that interested him, the weather, his garden, his cat, the dogs, the horses.  He would ask me about what I was working on.  He was tremendously supportive of my career.  I was battling my own demons, demons of my own making, but demons never-the-less that I rarely discussed.  I would ask him how he was, but he would always answer, “I’m still here.”  I knew that I would have to call my mother to learn about his physical well-being  if I wanted anything more in depth.  He never complained.

One day I told him I was tired of him always saying he was fine, I really wanted to know how he was.  I wanted him to tell me the truth.  He said, “You want me to tell you about the constant pain I’m in?  You want me to tell you about how my bodily functions are slowing down and what that’s like?  Is that what you really want to know?”  I remember pausing for a second and feeling confused.  And then felt terrible for my hesitation.  What I really wanted was for him to be fine.  I wanted him to be happy and energetic and well.  I wanted him to feel good and he did not.  He did not feel happy and energetic.  He was in pain.  Physical and emotional pain and a lot of it.  At the time I wanted to be the one who would change his circumstances.  I wanted to be able to make him better.  I wanted to save him from his pain.  But I couldn’t.  I couldn’t.

When my daughter tells me she wishes there was a cure for autism, I feel that same stab of pain.  This is the price of our inhumanity.  I think how society and my past actions have done this to her.  All those people, the media, the articles, the doctors, the therapists who spoke of her neurology as a terrible thing, a neurology that is not understood, that most see as inferior.  And I blame myself for having bought into this belief for so many years.  The idea that if I could just find the right pill, the right bio-medical intervention, the right therapy, we would successfully alter her brain and make it so she could talk and have conversations with us, so she could learn to “pass” if she wanted to, so that she’d at least have that option if she chose it, despite the devastating price she would have to pay to achieve this.  So that she’d have a chance.

But she couldn’t achieve this goal and I learned to stop asking her to.  I found other methods, not therapies, not treatments, but rather ways to teach her, ways to work with her specific neurology, and I keep practicing these methods because I have seen how others who created them and have trained in using them are able to converse with her through writing.   While I do all that, I keep telling her and showing her that she is loved and of value.  She is worthy and perfectly imperfect and deserves to be treated kindly and as the intelligent, sensitive, talented human being that she is.  She has as much right to be in this world as anyone else.  She is equal to her peers not less.  Being indistinguishable is not a goal.

My daughter’s neurology is not inferior.  Those who believe this are wrong.  My daughter is no more inferior than I am.  She has challenges, they may feel at times insurmountable to her, but we as a society can make her challenges easier.  It is our inability to lessen her challenges that is at fault, not her neurology.  It is our responsibility to challenge our views, to call each other out when we see injustices being done, to treat each other with the same respect and care we would have others treat us.  We must never give up.  We must never allow ourselves to fall into lethargy or the false believe that we are better than anyone else.  We are not.  We are human.  Imperfect.  We need each other.  We need to push each other to do better.  We can do better.  We must do better for our children, for this world, for all humanity.

Jen at Down Wit Dat is doing a blog hop.  It is open to all blogs in the disability and special needs communities: self-advocates, allies, parent advocates, and others are encouraged to share posts. 

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The Teen Behind the Blog

There’s a blog called, TeenTyper, written by someone who describes himself as, “an autistic teenage awesome boy.”  He started his blog two years ago when he was 14 years old.  On a recent post he wrote, “the feeling is bold saturated thimbles of strength.”  Em and I had the honor to meet the young man behind the blog while in Syracuse.  As he also lives in the same city as we do, we got together with him and his mom yesterday.   He is non-speaking, but types and so he and Em typed to each other for a little while and then I asked if it would be okay to talk to him about his blog.  He said it would.  I asked him, “Why did you start writing your blog?”

He typed, “i startd because my aggravation abt my spaz speaking.”

This is from his Subway Poem

“Subway subculture asserting the stroll
I watch and try to look like another old soul…”

Later I asked him, “Is the blog a place where you want to tell people something specific or is it more a general way to communicate your thoughts, or something else?”

He typed, “neurotypical need to be more conscious abt mean stares and hearing my voice will help them understand who I am.”

From Let me say:

“Before you judge let me say
You need to try being me
Before you judge let me say
I feel awful when you overly stare at me
Before you judge let me say…”

We need to be aware of the harm we do to each other with our judgments and implied criticism.  We need to pause and take our time.  We need to give each other the benefit of our kindness, we need to slow down…  we need to talk less and feel more, we need to give one another the gift of acceptance, we need to stop with our projected fears, our desire for sameness, our impatience, our disregard for another’s humanity…  we need to embrace one another.

From Wasted Words:

“Words wasted on nonsense
Still
Define…”

I urge everyone to go over to TeenTyper and give it, and the “badass awesome” teen who writes it, some love and support!

An Interview With Tracy Thresher of Wretches and Jabberers

Wretches and Jabberers, the not-to-be-missed documentary by Oscar Award winning and two-time Academy award-nominated filmmaker Gerardine Wurtzburg, follows two non-speaking Autistic men, Tracy Thresher and Larry Bissonnette as they travel the world, reaching out to other non-speaking Autistic people in an attempt to change public perceptions surrounding intelligence and autism.

I’ve written about the film ‘here‘, ‘here‘ and ‘here‘ and about meeting Tracy and Larry, ‘here‘, ‘here‘ and ‘here‘.  I cannot emphasize enough how mind altering this documentary is. It is imperative people begin to examine their own ideas about what intelligence is and what that means, particularly as parents of children who may be similar to Larry and Tracy, who appear profoundly disabled or have difficulties with verbal communication.  Tracy and Larry exemplify all that is thought to be “other” and yet, when they type, they are eloquent, often hilarious, articulate and philosophical, as well as insightful about society’s view of them.  After watching Wretches and Jabberers, one cannot help but conclude we are all more alike than not.  The divisions we perceive are shown as constructs of our own making.  The biases we have towards those with disabilities is something we all must actively change.

A few months ago Tracy Thresher generously agreed to answer a few of my questions.  What follows is our conversation, but as you read this, please think about questions you may have and leave them for me in the comments section or email me privately with them at:  emmashopeblog@gmail.com.  (Do tell me whether you prefer to remain anonymous as I will credit you with any questions I end up using, unless you prefer I do not.)  I intend to submit this interview, once it’s finished, to Huffington Post and hope it might inspire people to reconsider their assumptions.

AZ:  Tracy, how would you describe the documentary, Wretches and Jabberers?

TT:  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. Our journey takes us to places of enlightenment and our humanity, humor and intelligence comes shining through our typing. Our mission to spread the reality of our amazing intelligence through our typing is our way of promoting the Presumption of Competence dispelling myths. Our story is one that is a road trip for two friends who are in Larry’s words “more like you than not”.

AZ:  “More like you than not” is such a wonderful description.  So much of the literature surrounding autism is about the “deficits” of Autistic neurology compared to non Autistic neurology. Can you talk about the assets and the similarities?

TT:  In my way of thinking, my experience initially was uncontrollable anger for the life I had trying to break through the misunderstanding in school. Kids can be brutally honest, reflecting the language that was the accepted norm in my childhood. Labeling kids is crippling. MR (mental retardation) on a diagnostic chart equates to NOT a candidate for the honor roll. Now I am able to communicate the reality of autism. I met Monk Hogen during the filming of “Wretches and Jabberers”, shining his wisdom on my autism. My true desire and purpose in life is breaking the walls of injustice down and my autism is the gift God gave me. I now focus on how I am connecting with all kinds of people through my work on the road. The high I feel in my own community is so wonderful, knowing that people want to know me. The man I am today is because my autism is the gift I was given to be a leader to anyone who has ever felt less than human based on their appearance. Martin Luther King knew that hurt and he took it to the mountain of peace. My mind is more like a Mensa candidate than I can type. My life is a testimony to the lesson of humanity. Like Larry typed “More like you than not” is the guiding principle to inclusion.

The anger on stage during my presentation in Japan was related to the lost opportunities in my education. I kept shouting out my automatics like “Look at me now! The kid you told one another to keep in isolation now is mentoring students which is healing salve to old wounds of injustice.” The other anger in Sri Lanka is more about the heat in the way it took my overly heated mix of perspiration soaking my clothing to extreme discomfort. Also, the popular foods in their culture are not in my comfort zone. Finland washed my anger, turning my heart to love of the climate. The cuisine helped too. Primarily, beautiful lands of countryside put my spirit at ease. Henna melted years of lost hope by crumbling away the feelings of isolating my heart to love.

People in the world often fear the paradox that autism usually presents. Larry and I mostly felt gracious vibes in our travels but the camera crew likely alters reality. To reflect on the cultural attitudes, the typing of my international friends is the true compass pointing to injustice.

AZ:  For children who may be trying to cope with similar frustrations and anger, what do you suggest to them and their parents, teachers and therapists?

TT:  This is 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.

AZ:  Was there anything others might have done to help you when you were overwhelmed with anger?

Harvey and I have trust in our partnership. I need his firm yet kind support to stay on course with managing my autism. Harvey and I work well together. Typing is my outlet and open communication is the key.  Long term shared goals helps to keep me on track. Harvey’s commitment to my communication is the big time dosing of calm energy that I need. The commitment to presuming competence is the major breeze of refreshing air to cooling anger.

AZ:  You communicate by typing, but need someone to support your typing.  Why is it necessary for you to have someone supporting you?

TT:  Impulse to type out my most irritating automatics like going to radio stations or wcax news gets looping in my mind. Having good facilitators is helping me to slow my typing to think and connect to my inner thoughts. I also need high goal of working on fading physical support to be more independent and type with lessening support. Building trust is critical to fading.

Tracy Thresher

Non-Speaking People Who Type

This is a topic I would prefer not to discuss, but a few things happened recently that make it difficult not to write about this.  So… here goes…

Facilitated communication has had a bumpy history.  It began in the ’70’s and has been lurching along ever since.  There have been studies done, both proving it’s validity and others proving it as an invalid method of aiding those who do not speak to communicate.  This post is not about whether FC is valid.  Those who do not believe in FC’s ability to help those who cannot speak will not be swayed by anything I write here.  For those who are interested in reading more about FC and its history you can do so by reading this and this and the many links embedded in these posts.

What I will write about however, is all those FC users who have gone on to type independently.  And here is where things get really interesting.  Those same people who are convinced FC is all a mirage, a kind of non-speaking, Autistic version of an elaborate magic show, remain convinced the non-speaking person who now types independently is not really doing so.  Those people continue to insist it is a “hoax” despite witnessing, some even after seeing in real life, a non-speaking person type on their own.

Just to be clear, I am not writing about hand over hand or a hand on a forearm assistance.  I am writing about the many people who began typing with a facilitator, but who now type independently.  By independently I am referring to those who may still need a trusted person standing nearby.   Some type with another person’s hand placed on the middle of their back, others may need a hand gently placed on their shoulder.  Yet these same people who speak out forcefully, often aggressively to any who dare write about someone who is non-speaking and writing of their experiences, say even a hand on the back proves these non-speakers cannot and do not type their own words.  They insist that they are merely puppets doing the bidding of the person who is physically nearby.

What fascinates me about this is that these same people who insist it’s all a “hoax” (this is the word they usually use) would rather believe a person can move a seated, non-speaking person’s hand to hit specific keys on a keyboard by virtue of their physical presence, rather than entertain the notion that this non-speaking person, may in fact, be typing their own words.  One such person commenting on a blog post about something unrelated to FC, but that had a link to Barb Rentenbach’s book, I Might Be You, wrote, ” I don’t consider typing with an arm on the shoulder independent typing. You can clearly see the facilitator nudging her towards the letters.”  Not to quibble, but seriously?  So this is like some sort of typed ventriloquism?  Touch someone’s back and direct them to write thoughts that are not their own?

I urge any of you who believe this is possible to try doing it… place your hand on another’s shoulder or the middle of their back and see if you are able to control what that person then types.  And while you’re at it, try standing next to the person and psychically urge them to write something.  It seems incredible, but there are those who not only believe this to be the case, but they then demand “proof” that this person is typing independently, despite the fact that they’ve just been given the very “proof” they asked for.  Evidently “proof” is subjective.

What bothers me about all of this is that those who are typing to communicate are doing so because they have no other means.  This is not a “choice” that’s being made.  The people who continue to insist they are a “hoax”, that it’s all a “mirage”, that they are being “controlled” are taking away the only way they can communicate.  They are silencing them.  They counter this assertion by saying that on the contrary, they are actually “advocating” for those who do not speak and are protecting those who are at the mercy of a facilitator who is putting words into another’s mouth.  Yet, even when confronted with a non-speaking person’s typed words, typed without anyone’s hand on their arm, they continue to insist the very presence of this other person is all it takes.  The transference of perceived power to cover up their dehumanization of another is convoluted.

If you google “Carly Fleischmann” the third entry that comes up is “Carly Fleischmann fake”.  Sadly Carly is not alone when it comes to such beliefs.  There is a long and horrible history of non-speaking people being discounted and effectively silenced by those who believe they cannot possibly be intelligent, insightful beings.  There are those who will dismiss people like Carly as an anomaly, a “prodigy” and thereby ignore the years of effort it has taken her to get to where she now is, or they conclude she is a “fake”.  There is nothing new about the silencing of human beings deemed inferior.  (Read Inventing the Feeble Mind by James W. Trent, Jr.)  The ingrained prejudices and dehumanization of Autistic people continues.

I want to end with one last thought, which is this – if you found yourself unable to speak, but could type to communicate, yet when you did so, people doubted the validity of your words, accused you of not actually writing what you’d so painstakingly typed, what would you do?  How would you respond?  How would you fight back?  Could you fight back?  Restraints come in many forms, but all are effective.

As Barb Rentenbach writes, “I might be you.”  For those who doubt that sentence is her own, you better hope those words are wrong.

Barb types with Lois’s hand on her back as Emma twirls her string – April 2013

Barb types

Anger, Confusion, Doing the Right Thing

My father was born and raised in Paris.  He was actually Swiss, hence my last name, but he grew up in France and only came to the States in his twenties.  As a child I remember feeling ever so slightly embarrassed by my obvious “American-ness” something my father was often critical of in not so subtle ways.  One of his complaints was regarding what he felt was an American preoccupation with “happiness”.  One of his favorite phrases, repeated to my annoyance when I was a teenager, was “no one ever promised you a rose garden.”  (It was an interesting statement coming from someone who lovingly tended to his rose bushes that accented an enormous cactus/rock garden in front of our ranch-style house.)  I hated when he said that.  I can remember driving in the car staring out the window, talking about the injustices of the world and our society and feeling it was all too much to bear and he would come out with the thing about the rose garden or another of his favorites, “it’s a wicked world”  and I would silently scream in my head, while saying nothing.

It’s snowing right now.  My studio windows look north onto a bridge where hundreds of commuters barrel along to and from Manhattan.  On sunny days to my left the Manhattan skyline beckons in all its grandeur, to my right massive factory buildings rise up, grey concrete and windows where I can see heavy machinery, artist’s studios and manufacturing.  Often, on the street my studio building occupies, film crews shoot TV shows I’ve never watched, parking is suspended, barricades are set up and large tables laden with food, none of the actors will eat, take up space on the sidewalk.  But this morning it’s snowing.  Manhattan is completely obscured by heavy, grey clouds.  Different sized flakes whirl about as though unaware that gravity will eventually win out.

I spent most of my teens in a state of confused, directionless, rage.   Eventually all that anger found its target…  me.  For the next few decades I took my upset and sense of injustice and dumped it on my self over and over until I had all but forgotten there was anything else to be outraged about.  Slowly over time that changed.  I learned to have some acceptance, I learned that my anger was not the single worst thing about me, to be buried and beaten down and hidden.  I learned that other people’s anger, while uncomfortable, would not kill me.  I learned about myself and I began to see that my resentments led me to behave in ways that would eventually crush me.  My addictions (click for more on that) were all about rage, debilitating resentments turned inward.   I learned the only way I could crawl out from under my addictions was through honesty, acceptance, compassion and love.  I learned I could feel rage, but that I had to learn how to respect and care for it.  I am still learning.  I haven’t gotten it all figured out yet.  I still falter and make missteps, but I know the key points so that I don’t completely fall off into self-destruction.

Anger.  What is it telling me?  I have to keep my actions honest.  I have to keep conflicts centered on separating feelings from facts.  I have to try to recognize when I am responding with judgment, prejudice, privilege, superiority or defensiveness (this is no small feat!)  I have to step away and ask myself – am I being honest?  Am I being willfully hurtful?  Am I intentionally or unintentionally being manipulative?  Am I afraid?  If so, what of?  Am I speaking from truth or because I want others to think well of me?  Am I placing principles above personalities?  Am I practicing these principles in all my affairs?  Am I gossiping?  Am I feeling superior or conversely inferior?  Am I demonstrating any of these things in my behavior?  What can I do to support those I care about and love?  What can I do to be of service?  What is the next “right” action in the face of conflict?  Sometimes the answer to this last question is to be present and enjoy the snow falling outside my window and to see the beauty in its gathering on the rooftops and farther below on the ground.  Sometimes, not always, but sometimes, taking care of myself so that I can take action at a later point means doing absolutely nothing in this moment.

January 2013 – The Chrysler Building at night

Chryslar Building

“I might be you.”

I might be you. the terrific new book written by Barb Rentenbach and Lois Prislovsky, Ph.D awaited my arrival from our holiday travels.  I am only on page 51, but wow(!) what a book!  Barb is Autistic.  She also happens to be non-speaking and needs support doing almost everything including communicating.  Barb uses facilitated communication to type.  In her own words she explains, “The deal is, I still can’t talk, but I can type on a keyboard or letter board if someone supports my wobbly hand.  The process is called facilitated communication, or “assisted typing.” It is quite controversial, meaning lots of people think it is not really me doing the typing.  This infuriates me…”

For those who are dubious about facilitated communication, Barb now types independently requiring just a hand placed gently on her back.  In October of last year I went to a presentation given by Barb and Lois.  It was riveting, mind-blowing and made me rethink everything I thought I knew, but realized I did not.  Barb wears thick glasses and uses an oversized keyboard to type.  She has a terrific sense of humor, is incredible honest on all topics including extremely personal ones;  this book is a joy to read.  She discusses self-injurious behavior, feces smearing, violent outbursts, which her school viewed as baffling and without provocation and yet in the telling, one realizes this was not the case.

Barb eloquently describes the brutality of other human beings who do nothing to temper their contempt for any who appear different.  Barb writes, “Let me be brutally honest.  Most of the blisteringly painful assaults and provocations happened at school – this school, by children who grew up to be you.”  Breathe.  Read that again.   “… Most of the blisteringly painful assaults and provocations happened at school – this school, by children who grew up to be you.”  “You.” Take a breath and let that in.  “Children who grew up to be you.”  

Confession:  I am in second grade.  There is a little girl named Louise who wants to be my friend.  She has warts covering her hand, the hand that she has extended to me, the hand she wants me to hold, only I will not.  I am the new kid.  I am well aware of the unspoken rules of the playground.  You do not hold Louise’s hand.  You do not allow yourself to be seen with Louise.  You distance yourself.  You play alone if need be.  To be seen with Louise is to be like Louise.  Flawed, with warts for all to see.  Instead I tell everyone I moved from a foreign land and spoke another language, a language only I and the village I have moved from speak.  I lie about my family, I lie and say we lived in a field with a house made of straw.  I told these lies because I thought they made me seem exotic and fascinating.  I lied because, already at the age of seven I believed I was less than, not good enough, destined to be like Louise, with my hand outstretched to others, only to be rejected time and time again.

Barb writes about how she is unable to eat without making a mess, as hard as she tries, her hands do not do as her mind bids them.  At lunch a student reports her messy attempts to eat her sandwich and is told by a teacher that she will have to eat somewhere else, away from the others as she is, “making the other children sick.”  This book (and again I am only on page 51) made me stop and reflect on my own behavior.  Am I really as empathic, compassionate and wonderfully kind as I would have everyone believe?  Do I make assumptions?  Do I hold beliefs about others because of the way they appear?  What are my hidden prejudices?  Am I able to admit to them?   Who among us can say without hesitation that were our bodies not able to respond in the way our brain and intellect would have us, were we ridiculed and shunned as a result of that disconnect, that we would maintain our composure, would not act out in protest?

“Am I so different from any of you?” Barb asks.

Em sledding

This… Just This….

Someone spent time creating this page on Facebook… no one stopped them until countless people had seen it.

Hatred

This page has now been removed.  I post it here because the hatred, the sheer toxicity and venom that the person who created this page had to have felt to create this page is what so many of my friends and I have worried about and feared.  This screen shot sums up so much.

I have spent several hours writing and deleting my thoughts on this.  I have decided I cannot write anything more because I have no words.  I have nothing to offer.

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