Tag Archives: human rights

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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A Recipe For Living a Good Life

Last night Richard and I had one of our conversations.  It’s the conversation that starts with, “If only we’d known what we know now…”  The conversation that continues with, “If only we’d known our friends, particularly the ones whose neurology we don’t share, the ones who are Autistic…”  It’s the conversation that ends with both of us looking at each other and shaking our heads until one of us says, “We would have done everything differently…”   And then the other joins in with, “Literally.  We would have literally done everything differently!”

One of the biggest motivators I have for continuing to blog about autism is this idea that everything would have changed had we known what we know now.  How different our lives would have been had our introduction to autism not been abject fear, but to adults who are Autistic.  How different our approach would have been had we not reacted to the news of our daughter’s neurology with terror.  How much money, time, energy, not to mention pain would have been avoided had we not listened to all those non-autistic people who greeted our daughter’s diagnosis with, “Here’s what you need to do…”  “Here’s the name of a therapist/neurologist/homeopath/nutritionist/DAN doctor, call them now!”  “You should try…”

I’ve written about all of this before, but since I typically blog Monday through Friday, many of you may have missed those posts, so here are just a few…

What I Wish I’d Been Made Aware Of When My Daughter Was Diagnosed With Autism
How Fear Drove Me To Pursue A Cure
We Are in This Together
A Fantasy For Parents of Newly Diagnosed Autistic Children
To The Person Who Googled “I Don’t Know if I Can Handle Autism”

What we were told about autism was WRONG.  Everything we were told during those first few years after Emma was diagnosed have NOT proven to be true.  Having an Autistic child does not mean the entire family will be dragged down.  No one need “sacrifice” their life to support another, in fact, our lives are enhanced by each member of our family.  Each of us brings something unique and special to the family. Having an Autistic child is not the same as having a child diagnosed with cancer, this comparison is incredibly hurtful to my child, to your child, it is offensive to all of us.

We have been told all kinds of things about our daughter by non autistic people.  Not one of their predictions has come true.  NOT ONE!  Read that again.  Nothing we were told would happen, actually has!   Think about that.  Being given an autism diagnosis for your child is like listening to an anchorman predict the weather a year from now.  But we believed every single one of those pronouncements and then behaved as though each dire prediction was fact.  If I’d known all the people I know now, the people I’ve interviewed, whose blogs I read, all the people I am fortunate enough to call my friends, who have changed my life and helped me understand autism and what it’s like living in a world that doesn’t accept them, growing up with parents who believed they were doing what was best for them, but who were being told the same sorts of things we were told… Had I known all those people when Emma was first diagnosed, our response to the pronouncements and predictions given to us would have been to laugh and walk away. Literally.  We would have laughed and walked away.

We would not have hired the agency who provided us with round the clock therapists.  We would not have shuttled Emma from one doctor to the next.  We would not have spent all those nights lying awake, staring at the ceiling fearing what would never come to pass.  We would not have lost all those years, years we could have spent actually enjoying and loving our child, but that were spent in fear, engaged in a war on her neurology.   All those years when Richard and I felt beaten down, could have been spent embracing this amazing being who has taught us so much.  The challenges any parent faces, exhaustion, sleepless nights, worry, these would certainly have been a part of our story, but the terror… the terror did not have to be a part of it.

So here’s the truth about my Autistic child:

She is a human being with desires, wants, needs, emotions and feelings, just like any other child.  If I treat my (Autistic) child the way I would want to be treated, with unconditional love, respect, encouragement and support, I will have been a good parent.  If I can be kind, patient, vulnerable and willing to examine my preconceived beliefs about what it is to be a human being, while making amends for my mistakes;  I will have led a good life.

Emma and Nic ~ 2003

Em & Nic - 2003

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

“People Have to Listen”

Stop Hurting Kids is a campaign to “end restraint and seclusion abuse in schools.”  Restraint and Seclusion: Hear Our Stories is a 27 minute film by documentary filmmaker, Dan Habib.   Creator of Including Samuel and Who Cares About Kelsey?  Dan Habib is “Filmmaker in Residence at the Institute on Disability at the University of New Hampshire.”  The transcript of Restraint and Seclusion is available here.

For those of you who do not have the time or inclination to watch the film, here are a few quotes from it, which I hope will serve to pique your interest enough to watch the film in its entirety.  Because this is happening all around us, because this could be one of our children, because we, as a society, must become aware of what is going on, because without awareness and protest this will continue, because prejudice and brutality are not the answer, because as Barb Rentenbach continues to remind us, I might be you, because as my daughter, Emma has said on numerous occasions, “People have to listen.  Mommy, people do not listen to Emma.”

“The National Disability Rights Network reported that in recent years, the misuse of restraint and seclusion has resulted in hundreds of deaths and thousands of injuries.”

Peyton Goddard – “It was bruted power jired by purses wrongfully called teachers trying to beat I. This war wasted my rest. The sweet in I evaporated out.”

Helena – “He slammed me up against the wall, arm barred me across the throat and lifted up so I couldn’t breathe. And then whispered, “How am I supposed to talk to you nice and slow so you can understand?”

Wil Beaudoin – “One particular day we went to see my son and we were going to give him a haircut. So, we took off his shirt and he was covered with bruises and abrasions, fifteen to twenty on his body…everywhere.”

Peyton Goddard – “Fright opted I timid, silent and unable to fight back. Telling myself sweet lies that the tortures did not matter.”

Brianna – “I did not have a speech-generating device. Good evaluation would have made that happen. I tried to tell my mother. She did not understand me or she thought the teachers knew everything.” 

Peyton Goddard – “Try to see potent powerful potentials in each pierced person. There you will free their gifts. There I can feel I’m treasured. There nary I’m fret. I’m ready. Are you? Try please.”

Larry Bissonnette, Peyton Goddard and Tracy Thresher at TASH

TASH 6

 

But What About Alex?

Another Autistic child has died… stabbed… multiple times, in the chest, by his mother. Alex Spourdalakis was 14 years old.

The mother of a 14-year-old with severe autism who was found stabbed to death…” ~ Daily Herald.com

But what about Alex?

The mother of a 14-year-old with severe autism…” ~ Pantagraph.com

But what about Alex?

First degree murder charges have been filed against Dorothy Spourdalakis, the mother of a teen with severe autism…” ~ abclocal.go.com

But what about Alex?

A young man. Stabbed. Not once. Multiple times.

We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the Pursuit of happiness.” The United States Declaration of Independence – 1776

But what about Alex?

In the 237 years since those words were first written we have failed miserably at putting this idea into practice. All human life is not treated as equal; apparently it is not “self-evident”. We continue to live in a world where equality is still desperately sought by a great many.

For those who are born unable to speak and Autistic, those among us, who are given the label “severe”, their lives matter even less. We not only think of ourselves, (those of us who are able to speak and whose neurology is not Autistic) as superior, our lives deemed more worthwhile, but we are reminded of our superiority every single day of our existence, just as those who are born unlike us are told in myriad ways how they are not.

Autistic people, particularly those with multiple physical challenges, are spoken of as “burdens” to society, they are talked about as though none who are Autistic are capable of understanding the words being used to describe them. They are not consulted. They are not listened to. For the most part they are being ignored. And those who are raising their voices in protest, who dare to speak out against the crimes committed against them, they are met with resistance, anger, indignation. They are often ridiculed, dismissed, silenced or simply ignored.

When a parent murders their child, we cringe in horror. When that child is disabled we sympathize. The media brings in psychologists to help us understand. We dissect the child’s history, we look for clues, what could have provoked a parent to do such a thing? Sometimes we conclude the parent was crazy and unfit, but not before we make sure there was nothing unusual about the child. As we rally around, trying to distance or identify with the parent, Alex and those like him are all but forgotten. His life is seen as an example of what some must endure. His life becomes an illustration of that burden on society that everyone wishes would just go away.

But what about Alex?

What about what Alex had to endure? What about what it must have been like to live his life for those 14 years? Where are the news articles discussing who this young man was? What did he love? What were his passions? What made him happy? What must it be like to not be able to speak? Did he communicate through typing?  Did he read and write and if so what did he like to read?   What was his favorite subject?  Did he love music?   Did he like animals?  Was there something special he enjoyed doing?

What about Alex?

Alex

 

Trashing Common Misperceptions About Autism

“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.

“Autistic People Are…”

*Following on the heels of the tremendously successful “Autistic people should…” flash blog last Saturday, today’s flash blog has bloggers adding their thoughts to “Autistic people are…”

Autistic people are…   

human beings.  

with the same rights as anyone else.  

equal.  

as diverse as those who are not Autistic.  

Autistic people are.  

Welcome to the human race.  

Now let’s start treating them as such.

For some history and the flash blog link, click ‘here‘.

As a direct result of last Saturday’s flash blog and thanks to the hard work by Yes, That Too, Unstrangemind and many other Autistic bloggers, this happened – Google Changes Policy for Autism 

While those policies have not yet gone into effect, it is hopeful news and a wonderful first step.

“Autistic People Should…”

Today is “Autistic People Should…” flash blog day!  Please take the time to read these terrific posts by Autistic people who are blogging in to change the current views by non-autistic people of what Autistic people should or should not do or be.  Autistic people are taking these three words today and making them their own.

The Autistic People Should… Flash Blog

To give all of you an idea of what comes up if one types “Autistic people should” into a google search box at the moment ~

Yeah.

This has to change.  WE can change this, all of us, together, by spreading the word, sharing the flash blog link, tweeting the posts.  Let’s help change the way we think about autism and Autistic people.  We ALL benefit when we work toward ending oppression and respecting every person’s right to exist.

A Dream ~ Autism: The Documentary

Richard and I finished up our “staycation” by watching the Oscar nominated short documentaries at the IFC Center (Independent Film Channel) yesterday.  As I watched them I thought about the documentary I would most like to see.  It would be about Autism and Autistic people.  It would go back to Lovaas and Hans Aspergers, then Bettelheim, the evolution of what we thought we knew about Autism and those who are autistic and the ways in which we thought to “treat” it.  It would cover the move away from institutionalization to the current, though still negative thinking regarding the neurology we call Autism.  The documentary would have dozens and dozens of Autistic people of all ages, non-speaking, speaking, sometimes speaking, those who have careers, to those who are unable to work to those who work for themselves.   It would look at functioning labels and address why those labels work against everyone, it would cover the various myths surrounding autism and why those myths are ultimately destructive and limiting.  It would be a collaborative effort of Autistic and non-Autistic people.  It would be an example of what we can create if we work together, regardless of our neurology.  That’s the documentary I would like to see made.

Short of making such a documentary myself, I won’t hold my breath, though.  The whole idea of neurodiversity is considered radical and even threatening by many.  I understand that.  I understand that it is not a popular or particularly good way for organizations to raise money, especially those whose main goal is to fund research for treatments and cures.  I understand that change happens slowly.  I understand that any movement involving the rights of a minority moves slowly before it is embraced by more than a radical few.  But I also understand the power of good film making and that it can reach many more than any written piece could…

If you could see a documentary about Autism and Autistic people, what would it cover?

Em – 2003

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What Does Autism and The Hubble Space Craft Have in Common?

Most of you have probably read Jim Sinclair’s famous essay Don’t Mourn For Us.  If you haven’t, do.  In the Loud Hands:  Autistic People, Speaking Anthology a version of that essay comes after Julia Bascom’s wonderful Foreword.  By the way, if you didn’t see the Huffington Post interview I did with Julia regarding the anthology and future projects, you can read that by clicking ‘here‘ and I’ve also embedded a link so those of you who haven’t read the Anthology can buy it and read, because..  well this book needs to be read by every person on this earth AND it’s now available in paperback as well as on Kindle, so who can resist?  Here’s the “link” (again) to buy it.  Full disclosure – I bought this book for a number of my family members and gave it as a Christmas gift!

I read the anthology as a PDF file first, then I read it again in paperback and now I’m rereading it with my highlighter in hand.  There is not a single essay that has not been streaked with neon green highlighter.  The anthology has contributions from a wide range of people (a few of my favorite writers are missing, but I am hoping this anthology will be followed with a second that will include writing from E. of The Third Glance (not to be confused with “E.” who is in the current anthology), Aspie Kid, Michael Scott Monje Jr and Sparrow Rose Jones to name just a few.)  It’s not the type of book you can really quote from as each piece needs to be read in its entirety to get the full weight and power of it.

Having said that, I have to quote Jim Sinclair and hope that all of you will get the book and read it from cover to cover.  Jim wrote, “The ways we relate are different.  Push for the things your expectations tell you are normal, and you’ll find frustration, disappointment, resentment, maybe even rage and hatred.  Approach respectfully, without preconceptions, and with openness to learning new things, and you’ll find a world you could never have imagined.”  “… you’ll find a world you could never have imagined.”  This has been my experience, exactly.  I think I’ve even said something close to this before.  I believe I’ve said finding Autistic voices and reading their words was like being presented with proof that another universe exists, but that I never knew about.  So for all of you who need or want proof that another universe, a more wondrous and fantastic universe than is imaginable, read the Anthology and be prepared to have your world changed in the best possible way!

One of Emma’s favorite Imax movies is about the Hubble Space Craft found to have a faulty lens and requires repair.  Once fixed, it produces absolutely hallucinogenic images of the universe that are so beautiful it is hard to believe they are real.  To me, autism is like those images, beyond anything I could have imagined.

Images taken from Hubble Space Craft 

HubbleSpaceTelescope_N90

6a01053624b365970c0120a5b6a7b5970b-800wi

 

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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GO VOTE!

*A version of the following was sent to me a few weeks ago.  This is about women fighting for the right to vote, but it could be the battle engaged by any group in the minority, including those who are Autistic fighting for the right to have a say in the policies that ultimately harm or help them.  It is the same story, told over and over again.  This post was inspired by Lydia Brown’s recent post, Protesting Autism Speaks on her blog Autistic Hoya where she recounts the response she received as she and others offered ASAN (Autistic Self Advocacy Network) flyers to Autism Speaks supporters and asked, “Would you like to hear from Autistic people?” only to be told “No” over and over again.

Less than 100 years ago women did not have the right to vote.

The 19th Amendment, ratified August 18, 1920, granted women the right to vote. Prior to that women marched and picketed as a way to bring attention to their cause.  These tactics succeeded in raising awareness, but were often met with massive resistance and brutality.

On November 15, 1917, known as the “Night of Terror” when the prison warden at the Occoquan Workhouse in Virginia ordered his guards to teach a lesson to the suffragists imprisoned there because they picketed the White House for the right to vote.


By the end of the night, many were barely alive. Forty prison guards wielding clubs and with their warden’s blessing went on a rampage against the 33 women convicted of “obstructing sidewalk traffic”.
One of those women was Lucy Burns. They beat her, chained her hands to the cell bars above her head and left her hanging all night.
Dora Lewis

They threw Dora Lewis into a dark cell, smashed her head against an iron bed, knocking her out. Her cellmate, Alice Cosu, thinking Lewis dead, suffered a heart attack. Additional affidavits describe the guards grabbing, dragging, beating, choking and kicking the women.

Alice Paul

Alice Paul began a hunger strike so they tied her to a chair, forced a tube down her throat and poured liquid into her until she threw up. She was tortured for weeks until word was smuggled out to the press.

Edith Ainge

Voting is our right. It isn’t always convenient, we have to take off early from work, find childcare to watch our kids, stand in long lines, but it is our right. A right our grandmothers and great grandmothers did not have.  It’s easy to take for granted that which we have grown up believing is a given.  But it wasn’t always our right, and while it is doubtful it could ever be taken away, there are many in this world who still do not have that right even today.

Helena Hill Weed – Serving a 3-day sentence for carrying a banner saying, “Governments derive their just powers from the consent of the governed.”

Lest we forget, rights we think are a given, can be taken away.

Go out and vote!

The UN and Henry’s Struggle To Be Heard

Another short post today as I have a meeting in another two hours.

As I wrote yesterday I went to a meeting at the UN – The Fifth Conference of State Parties to the Convention on the Rights of People With Disabilities moderated by Juan Carlos Brandt, Chief, Advocacy and Special Events, Department of Public Information, United Nations.  The specific event I was invited to attend entitled:  “Urgency and Hope, Report from Global Leaders in Autism Research, Education, Treatment and Policy” Joshua Weinstein, CEO and Founder of the organization, icare4autism, presented with Stephen Shore, Beth Diviney and Eric Hollander presenting as well.  ICare4Autism is the organization that invited me to attend their conference in Jerusalem this past August, which I wrote about.

Juan Carlos Brandt and Joshua Weinstein 

I asked an Autism group I’m a part of whether anyone had messages for me to take to the event and a number of people wrote things such as A. who asked that I say something about “using a functioning level (usually an assumed one) to silence someone is never ok” and S. who wrote “Disability Rights are Human rights.  More specifically Autistic Rights are Human Rights.  We deserve to be treated as equals.”  Several asked that I stress the need for all to presume competence and P. asked that I be sure to say, “don’t assume I have nothing to say, just because I do not speak.”  But the first person who reached out to me was Henry who sent me this:

He wrote:  “Could you please tell them I would like to be included and learn with friends my age and where I live? I wrote this.”I am a self advocate. I want the same rights as everyone. 

Today I read about Martin Luther King.
The worksheet said because of Dr King’s work, the Civil Rights Act of 1964 gave equal rights to all people.
I am a person.
I want these rights.

I want to go to school in my neighborhood.

Why can’t I?

Joshua Weinstein and Juan Carlos agreed to allow me to show Henry’s video, but when they tried to run it, they weren’t able to as evidently the internet was down in the entire building.  (It’s the UN!  And we think we have technical problems!!)  So as they were trying to get the video up and running I read some of the quotes from others.    I’m sorry Henry! But I’m going to keep trying.  I know many others are too.  To everyone reading this, please watch Henry’s video and “like”, comment and share.  This is one person’s struggle, but it represents the struggle of so many.

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A First Day And Life Continues..

Bounce, bounce, twirl!  Bounce, bounce, twirl!  I’d provide a visual, but I don’t have one, so you’re going to have to take my word for it…

Yesterday was Emma’s first day at her new school.  Emma was scared and anxious.  I was scared and anxious.  Every time I tried to do the breathing exercises we’ve been practicing, Emma begged me to stop, “No Mommy.  I don’t want to do breaths!”  So I did them quietly to myself hoping she wouldn’t notice.  We did exactly what we planned.  I took her to school.  I brought her up to her classroom where she joined three other children, two non-speaking and one verbal.  I stayed with her longer than I should have, but seated across the room out of her line of vision.  Her head teacher, who’s been teaching for more than ten years, and special ed for six of those ten, was kind, respectful yet reassuringly authoritative without seeming intimidating.  I set the timer for three minutes, gave it to Em and told her I’d leave when the timer went off.  She said, “Go sit with other kids when Mommy leaves” and I cursed myself for not having set the timer for 10 seconds, at the same time congratulating myself that I hadn’t set it for 10 minutes.  But that was the kind of day it was.  A day of juggling opposites.  Emma’s favorite book kept up a steady patter in my head…  Matman stands, matman sits, let’s say opposites!  Staaaaaannnndddd!   Siiiiittttt!  Staaaaaannnnndddd!  Siiiittttt!

And in between matman’s curious chant, I watched and listened.  I could see Emma relaxing.  I could see her watching.  She began to join in.  The timer beeped, I stood up, Emma walked over to the table to join her peers, just as we’d mapped out and I left.  When I returned to have lunch with her she was happy and laughing.  As we sat in the cafeteria with her teacher, aides and other kids I mentioned the “letter” I’d written.  I said, “I hope you didn’t feel it was condescending, I didn’t mean it…” and one of the teacher’s aides interrupted me and said, “Not at all!”  She then went on to tell me she’d gotten out a highlighter and made notes.  She and the head teacher reassured me that they appreciated it and credited it with the success of Emma’s first day.  I was relieved and grateful for their kindness.  When Emma was finished with lunch, she turned to me and said, “Go with Mommy to the big carousel?”  This was what I’d promised and I nodded yes.  As we got up to leave, Emma turned, said, “good-bye” and then said each person’s name and blew each a kiss (the ultimate compliment from Emma and not something she usually does.)  It was all I could do not to openly weep with relief.

There’s a great deal of talk about us parents.  How we feel, what we think, our emotional state, our perceptions, our understanding of events as they occur, what we think our child may or may not be feeling, thinking, understanding.  All of it is through the filter of our own experiences, what we’ve learned or been taught.  It takes a leap to realize what we think we know or believe may be incorrect.  That’s a hard concept to digest.  It’s taken me eight years and there will always be more for me to learn and understand, I’m still very much at the beginning of this journey.  This fall will mark eight years since Em’s diagnosis.  Eight years ago when I believed I knew things about my daughter, only to learn how very wrong I was.

I think I understand and then find I really don’t.  I don’t “own” Emma, she isn’t “mine” in the sense that she is not my possession.  She is a being in her own right, with her own ideas, opinions and thoughts.  I have ideas about what constitutes a quality of life, I have opinions about other people I meet, I view their lives through the lens of my life, my hopes and dreams.  It’s easy to fall into the idea that my views are the correct views, but I know how often I am incorrect.

I began this blog to record Emma’s journey, but have found I am increasingly uncomfortable making the assumptions necessary to actually do that.  In recent months I see this more accurately as a record of my journey.  I find myself not wanting to talk about Emma as much and when I do, I ask myself is she okay with what I’m writing?  I have her photo splattered all over the internet and while I am perfectly fine divulging the gory, messy details of my past in a public way, I haven’t given Emma the choice.  I’ve just done it.  I don’t know where to go from here.  Just because she often cannot communicate her ideas and opinions doesn’t mean she doesn’t have any.  I know now how incorrect this assumption is.  I’ve asked her about this blog.  I’ve shown it to her.  A few times she’s asked me to read her a post I’ve written.  I’ve asked her which photo is okay to post, but just because she points to one, doesn’t necessarily mean it’s okay.  It’s a dilemma and one I am not clear on, though increasingly I’m uncomfortable with the choices I’ve made.

Someone once said to me, “We give birth, the umbilical cord is cut and from that moment until we die our job is to learn how to let go.”  The timer hasn’t beeped yet, but I know it’s ticking.

Chalk Art on 7th Avenue – “Happiness”

“Step Inside”

Autism = A Human Rights Issue

Sometimes I read something and I am completely overwhelmed by the weight and content of the words.  Yesterday I read this – written by Kate.  It’s entitled Scarred.   It was posted on The Thinking Person’s Guide to Autism.  I am including just the first few sentences.  Please click on the link to read it in it’s entirety.  This piece needs to be read – by every parent, every school, every “specialist,” every researcher, everyone and anyone who every comes into contact with anyone, ever, on the spectrum.

“Scarred

Kate

We are scarred, we adults on the spectrum.

We are scarred, both inside and out.

Our lives are twisted paths littered with diagnoses. We have fought for years to get to where we are now, and still it isn’t good enough. 

We are scarred.” 

Autism is a human rights issue.  We must begin thinking of it this way.  We are condemning a group of people, treating them worse than we treat convicted felons, murderers, rapists, psychopaths.  We must stop.  We must stop the way we think about Autism.  We must stop the way we think of Autistics.  We must stop oversimplifying, we must stop applying our Neurotypical thought processes to Autistic people.  We must stop with our assumptions.  And the only way we are going to stop is by LISTENING!  We must, every single one of us, listen to those on the spectrum who are communicating and we must put aside our “but my child can’t talk, therefore this person isn’t like my child” or “this person must be high functioning and therefore doesn’t know what it’s like for me and my child” or “my child is in diapers and is nonverbal and therefore this other Autistic person has nothing of any importance to say to me”  or “I can’t hear this person, they’re too angry.”

We must stop speaking for Autistics.  We must stop arguing about semantics.  We must stop and hear the pain our misinformation and misperceptions are causing.  We must stop and listen.  Listen to what we, as a society, are doing.  Listen to what Kate and so many others are saying.  A group of people are being abused, shamed, yelled at, blamed, talked about, treated with contempt by schools, specialists, doctors, teachers, organizations carrying the word “autism” in it’s name, parents, siblings, cousins, society, the world.  We are arguing over wording.  We are bristling at the word Neurodiversity, we are shouting at one another, but shouldn’t we start listening to those who we are all supposedly wanting to help?  Isn’t it condescending of us to pretend to care about autism and yet make excuses as to why what so many of them are saying shouldn’t be listened to?  I hear people say, well that person is too angry, therefore, what?  Therefore their voice is invalid?  Really? Do we really believe that when  someone is saying something we agree with and want to hear?  Isn’t it that we don’t like it when someone is saying something that goes against what we think or believe?

Can we all try harder to look at what we’re doing when we try to silence those who are speaking out.  Do you think so many would be so angry if they felt they were being heard, that what they had to say was having an impact?  Hasn’t every movement had voices of anger as well as those who tried to be civil?   Don’t we need both?  Do you think they would be shouting if they didn’t feel ignored, condemned, brutalized?  Many Autistics are angry?  Yes.  Why wouldn’t they be?

Autism is a human rights issue that has been sadly overlooked.  That has to change.

It must.

I know, I know.  I just went on a rant.  I’m taking a deep breath…  

Autism can look like this… (2002)

and like this… (2003)

and this… (2004)

and this, too… (2012)

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