Tag Archives: human rights

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

sc000b447a

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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