Tuesday, October 14, 2014

Heather Clark: #IamNOTkellistapleton


I am not like the others.

I don't want to be.

I refuse the name.
 

Some background for those not following the story of Issy Stapleton and her abusive mother Kelli, who attempted to kill her just over one year ago. Recently, Kelli was on The Dr. Phil Show continuing to play the victim and exploit Issy, shortly thereafter she pleaded to a lesser charge of child abuse, and this past week Kelli was sentenced to 11-22 years in prison. It is a judgment I am mostly satisfied with. Issy will be grown before her would-be-murderer gets out. At the same time, I know that this sentence is likely less than a parent would receive should they have attempted to kill their own non-Disabled child.

I have been following the story. I have been speaking out. I have a vested interest. My kids do. The way Kelli has blamed Issy and Autism for her own horrific attempts to take a life,  the way our society, Dr. Phil, and especially other parents of Autistic children are relating to her instead of the true victim Issy, and the way this shameless, selfish mother has made her name, all of these things hurt Autistic people. My kids.

To portray Issy as the abuser is not just. She is a disabled child that has been relentlessly taken advantage of. She was provoked. Her mother hated Autism, wanted a normal child, spoke about her as if she were a mistake.

Kelli had the power in the parent child relationship, which is clearly demonstrated in the fact that Issy was sent to a residential treatment facility for the majority of the year leading up to the almost-murder. Kelli also had the power to lure Issy in, to medicate her, to lull her into death. Kelli was the abuser.

Issy lashed out, she reacted, for her own good. To bring her "behavior" into the conversation is victim blaming. It is an attempt to justify the killing of Autistic people. It is giving weight to the immoral idea that Issy, in part, deserved to die. Issy was never better off dead.

The sympathy, and worse yet empathy, that has been given to Kelli makes me sick. Heartsick. It pains me to know that the world identifies with a murderer before my children's kind. It bothers me to no end that they understand and accept the most heinous of criminals before they consider the humanity of Autistic people. It isn't right that Issy's life has been devalued in the minds of most and it isn't compassion or broadmindedness behind this disconnect with the victim. It is plain old dehumanization. The truth is that an Autistic child was victimized but hearts go out to the malevolent, so mine is sick.

Kelli started soliciting for this sympathy years before she finally had the nerve to act on her hatred. Her online record is foreshadowing, frightening. She profited off postings of Issy's every intimate and vulnerable detail, profited monetarily and as a means of bolstering her ego.

Within the Autism community there are certain sects that exist on the accolades given to them merely because they are parents raising Disabled children. Some of them exploit their children to get more. Some of them are driven on nothing but their hate for Autism. Kelli was all of the above.

After she was caught in the act of murder she continued her ways. She could have pleaded sooner. She could have NOT contacted The Dr. Phil Show, she could have told her friends to stop defending her, admitted full guilt, taken full responsibility, she could have done anything but kill.

It has got to be the ultimate betrayal; for a mother to murder their own. I sink so low imagining what Issy has to live with, knowing that the one who carried her in also tried to take her out. What Kelli did was a demonstration of hate, not an act of love, not a mercy killing. Hate for Autism. Hate for Autistics.

I should not have to defend my children's right to exist, nor my own integrity as a loving and nurturing parent of Autistic children, just because this disgusting example of an "Autism mom" has been given the platform and erroneously claims to represent me and my kind. My kids shouldn't have to defend their right to exist.

I've been called all kinds of things because I refuse.

Don't you dare call me Autism mom.

I am NOT Kelli Stapleton!



Image Description: Background, a rainbow of colors and textures, shows dark text reading: I love MY Autistic children to be silent when another parent abuses or murders theirs. -Heather Clark #JusticeForIssy

Monday, June 30, 2014

Not in My Home @SesameWorkshop #BoycottAutismSpeaks

This essay can also be found here on Raising Rebel Souls.  
 
Image Description: A photo of me in 1982, turning two years old. I have a Sesame Street Birthday hat and dark blue overalls on, standing in front of a cake decorated with Ernie, Bert, and Big Bird and lit birthday candles. My grandmother is standing over me, helping me clap my hands. My uncle is in the background smiling with my same age cousin, also in a party hat. It is one of my very first memories. I wanted to eat the character decorations more than the cake. Thirty years later my Autistic twins also had a Sesame Street themed second birthday. It was a completed circle in my life.
It was beautiful, but now it is not.



To all those involved in the creation and distribution of Sesame Street Workshop programing,
To all those who view Sesame Street programing,

For my Autistic friends and family,
For my Autistic sons,

Today I will take down the Big Bird wall hanging in my Autistic children's play area. I will gather their books and toys with the brightly colored characters and put them in a box. I will put the photographs of my second birthday and my sons' second birthday away. I will take the Grover magnet that has been on my refrigerator for the past 30 years off. I will be done with Sesame Street.

Today is the day that Sesame Street is no longer welcome in my home.

I will NOT, however, be done protesting their partnership with Autism Speaks.

I am mad. This month, we at #BoycottAutismSpeaks have pushed hard. We have worked tirelessly to help Sesame Street Workshop understand the mistake they have made by supporting Autism Speaks, and to learn about Autism from the source, Autistic people themselves. We did this because we care about Sesame Street. We worked because we love all children and believe they deserve an authentic education no matter the topic. We rallied because we appreciate the advances in civil rights Autistic adults are making. We dug deep because Autistic children deserve better from Sesame Street, and from the world. Everyone deserves better than Autism Speaks and the fear inducing tactics that they use. Every single one of us.

That is it. Everyone was welcome on Sesame Street, at least that is what the show has always portrayed. For some reason though, Autistic children and their elders aren't allowed on the street. Though Sesame claims to want to include Autistics, they partnered with Autism Speaks, which is an organization that clearly wants Autism to be eliminated. Autism Speaks treats Autistics as if they were diseased, when the truth is, they are simply a natural part of our human diversity. If my Autistic children, my Autistic family, and my Autistic friends are not welcomed as they are on Sesame Street, well then Sesame Street is not welcome in our home either. I will NOT subject my children to that bigoted approach.

Sesame Street is not simply ignorant now. Their stance has become willful. They have had a month, and longer, to figure some very basic things out, like Autistics do not want a cure they want acceptance and inclusion. Yet, they have chosen to ignore our attempts to reach out. They have ignored Autistic people themselves. They have been pretending as if we do not exist at all. Their actions serve to silence and erase a people trying so desperately to be heard. Sesame Street has the opportunity and now the knowledge, to become a true ally to Autistic people, which is exactly what Autistics need. Sesame Street has one of the only platforms big enough to compete with the monster that is Autism Speaks. They have made no attempts to do so. They have chosen to work against Autistic rights, human rights. They have stood firm in their partnership with the enemy of Autistics.

And I will continue to stand firmly against Sesame Street.

Though the damage they have and will do by maintaining their support of Autism Speaks is most important and detrimental to the Autistic community and their loved ones, Sesame Street has also done a major disservice to themselves. No longer can they claim to be a champion of diversity. I will call them out every time. We should all call them out. Instead of learning about Autistic culture, learning about the beautiful, and creative, and loving, and sensitive people that Autistics are, they have denigrated their own values by avoiding us. They have betrayed themselves. It's a shame that Sesame Street is not what it used to be. I can't imagine it was all a hoax, but doing the right thing is hard, and they have taken the cowardly way out.
Sesame Street, you are not welcome in my home as you are. You must change your mind about Autism!

When you do, I will gladly open the door again.

Until then,
Heather Clark

 

Saturday, June 21, 2014

Mommy is Mad @SesameWorkshop

"Mommy is mad at Sesame Street."

I said that to my five year old Autistic sons. Yes. I did.

Hyperlexic eyes scanned the computer screen. There was no hiding. There was no time to hide.

Believe me, I did not want to say it. I have been fan of Sesame Street my entire life. More than a fan, Sesame Street was foundational in my childhood and something treasured that I passed on to my own children, confident in the value system being portrayed. I trusted Sesame Street to be good enough for my sons. That means I trusted them with my world.

More, I did not want to say that because I knew what would come next.

Then they asked "Why?"

What would I tell them? How could I explain? Why should I have to? Why should I have to tell my darling, wide-eyed children the honest and raw truth?

Most people in this world think Autism is a terrible thing. So terrible in fact that they feel sorry for you. They would like to cure you of yourself. They would like to prevent other children like you from being born.

The idea that you are worthy as you are, as a wonderfully created human being, as part of our natural and glorious diversity, has not yet occurred to this world.

"Mommy is mad at Sesame Street because they made a bad choice."

"What did they do?"

I couldn't. I pulled away. I held back on the honest and raw truth. I held hard.

Again "What did they do Mommy?"

"They made a bad choice, that's all."

Damn it! My sons, it is not your fault! You ARE worthy, and you ARE wonderful, and you ARE gloriously divergent! We are just waiting for the world to catch on. NO, Mommy is fighting for the world to catch on. I love you, my sons.

I hope that's enough.



So, what did Sesame Street do?

They partnered with Autism Speaks. Yes. They did.

Autism Speaks who made me so afraid.

Autism Speaks who boxes us as tragedy. Then sells us.

Autism Speaks who tried like hell to keep me from my children, they try like hell to keep parents like me away from their Autistic children.

They tell us our children are lost.

They tell us our children are diseased.

They tell us our children are burdens, suffering, doomed.

They tell us that we must fight against Autism, against our children, instead of fighting for the world to catch on.

(TRIGGER WARNING FOR THE VIDEO IN THE NEXT LINK; flashing lights, risk of seizure.)

Now Sesame Street has joined forces with Autism Speaks.

Not good enough Sesame Street.

Mommy is MAD at Sesame Street.


I have been very focused on the Boycott this past month, and specifically, the relationship between my once beloved Sesame Street and this awful organization which causes so much harm. Although in the first conversation the boys and I had about this topic as described above, I held back on the truth, I have since been able to give them more information, in a way that I think respects both their right to be children, but also respects the truth. They know that Autism Speaks does bad things to Autistic people. They know Sesame Street made a bad choice by partnering with them.

And they are learning to fight like hell for the world to catch on.


Join the #BoycottAutismSpeaks movement.

Speak out to #EducateSesame.

Sign your name here.

Sign your name there.



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Wednesday, April 23, 2014

The 3rd Annual #AutismPositivity2014 Flashblog: Expressions of PosAutivity

cropped-autismpositivitybanner3.jpg

 

The Third Annual

Autism Positivity Flashblog

on April 30th, 2014!!

 


“Expressions of PosAutivity: #AutismPositivity2014″


Expressions of PosAutivity is intended to be a celebration of the multiple and varied ways to express experience or convey ideas. This year we hope to highlight the importance of flexibility in communication within our diverse community and honour multiple forms of personal expression, from the written word, to art, to photography, or a video (as a link), or…

We invite you to explore, share, and celebrate your moments, stories, or images of courage, strength,  and/or positive identity and pride in a way that speaks to you and rails against stigma. Express something PosAutive about autism, about being Autistic, or about the Autistic person/people in your life, etc.

Last year and the year before, hundreds of bloggers came together in a show of support and solidarity in response to negative stigma. The posts that came flooding in from all over the world were a beautiful example of the power of strength in numbers. With so much negativity still surrounding Autism and the misinformation and misconceptions that continue to abound, we this year invite you to participate in an intentional celebration of acceptance intended to highlight the importance of flexibility in communication within our diverse community.

We welcome all of you, anyone who is Autistic, anyone who has an Autistic person in their life, and all who blog about autism to share a message of support, wisdom, hope, and pride to this year’s flashblog by posting to

https://docs.google.com/forms/d/1fWjZ76uOG2KK3u0EsZll12EQ_6goDNVzEKK2BBZ8R7k/viewform

 

To participate:

1. Publish your post on April 30th in the following title format: “[Your Blog] Expressions of PosAutivity: #AutismPositivity2014″

2. Share your post on Twitter, Facebook, and any other social media site using the hashtag #AutismPositivity2014

3. Add your link to the Autism Positivity website (submit here or above)

4. Share/reblog this message to your blog, page, etc.



Screen shot 2014-04-21 at 6.45.04 PM

Thank you,

The Autism Positivity Project Flashblog Team, 2014

If you have any questions, please contact us at autismpositivity@gmail.com

We can also be found on:
Autism Postivity Blog: http://autismpositivity.wordpress.com/expressions-of-posautivity-autismpositivity2014/
Facebook: https://www.facebook.com/ThinkingAboutPerspectivesAutismPositivity
Pinterest: http://pinterest.com/positivityautie/autism-positivity-2012/
Tumblr: http://autismpositivity.tumblr.com/
Twitter: @PositivityAutie


Friday, March 7, 2014

Guest Post from Nick Walker: What Is Autism?

The following post was written by Autistic activist Nick Walker. You can find more of his work on his blog Neurocosmopolitanism, on Facebook, on Twitter, and on his website. Nick has been particularly helpful in my understanding of Autism, which is demonstrated in my own writing here. I have included some related personal thoughts directly after his essay.


What Is Autism?

March 1, 2014
 
How many websites are there that have a page called something like “What Is Autism?” or “About Autism”? How often do organizations, professionals, scholars, and others need to include a few paragraphs of basic introductory “What Is Autism?” text in a website, brochure, presentation, or academic paper?

I’ve seen so many versions of that obligatory “What Is Autism” or “About Autism” text. And they’re almost all terrible. For starters, almost all of them – even the versions written by people who claim to be in favor of “autism acceptance” or to support the neurodiversity paradigm – use the language of the pathology paradigm, which intrinsically contributes to the oppression of Autistics.

On top of that, most of these descriptions of autism – even many of the descriptions written by Autistics – propagate inaccurate information and false stereotypes. Some are so bad that they actually quote the DSM.

Of course, there are also a few really good pieces of “What Is Autism” text out there. But for the most part, they’re rather personal pieces, about the authors’ own unique experiences of autism, rather than general introductory definitions.

What is needed is some good basic introductory “What Is Autism” text that is:
1.) consistent with current evidence;
2.) not based in the pathology paradigm;
3.) concise, simple, and accessible; 
4.) formal enough for professional and academic use.

Since I couldn’t find such a piece of text elsewhere, I wrote one. And here it is.

I hereby give everyone permission to reprint the text below, in whole or in part, whenever you need a piece of basic “What Is Autism” or “About Autism” text. Please do credit me for writing it (and of course, a proper citation is a must in academic writing). But really, as long as credit is given, anyone can go ahead and use this text for free. 


WHAT IS AUTISM?
 
Autism is a genetically-based human neurological variant. The complex set of interrelated characteristics that distinguish autistic neurology from non-autistic neurology is not yet fully understood, but current evidence indicates that the central distinction is that autistic brains are characterized by particularly high levels of synaptic connectivity and responsiveness. This tends to make the autistic individual’s subjective experience more intense and chaotic than that of non-autistic individuals: on both the sensorimotor and cognitive levels, the autistic mind tends to register more information, and the impact of each bit of information tends to be both stronger and less predictable.

Autism is a developmental phenomenon, meaning that it begins in utero and has a pervasive influence on development, on multiple levels, throughout the lifespan. Autism produces distinctive, atypical ways of thinking, moving, interaction, and sensory and cognitive processing. One analogy that has often been made is that autistic individuals have a different neurological “operating system” than non-autistic individuals.

According to current estimates, somewhere between one percent and two percent of the world’s population is autistic. While the number of individuals diagnosed as autistic has increased continually over the past few decades, evidence suggests that this increase in diagnosis is the result of increased public and professional awareness, rather than an actual increase in the prevalence of autism.

Despite underlying neurological commonalities, autistic individuals are vastly different from one another. Some autistic individuals exhibit exceptional cognitive talents. However, in the context of a society designed around the sensory, cognitive, developmental, and social needs of non-autistic individuals, autistic individuals are almost always disabled to some degree – sometimes quite obviously, and sometimes more subtly.

The realm of social interaction is one context in which autistic individuals tend to consistently be disabled. An autistic child’s sensory experience of the world is more intense and chaotic than that of a non-autistic child, and the ongoing task of navigating and integrating that experience thus occupies more of the autistic child’s attention and energy. This means the autistic child has less attention and energy available to focus on the subtleties of social interaction. Difficulty meeting the social expectations of non-autistics often results in social rejection, which further compounds social difficulties and impedes social development. For this reason, autism has been frequently misconstrued as being essentially a set of “social and communication deficits,” by those who are unaware that the social challenges faced by autistic individuals are just by-products of the intense and chaotic nature of autistic sensory and cognitive experience.

Autism is still widely regarded as a “disorder,” but this view has been challenged in recent years by proponents of the neurodiversity model, which holds that autism and other neurocognitive variants are simply part of the natural spectrum of human biodiversity, like variations in ethnicity or sexual orientation (which have also been pathologized in the past). Ultimately, to describe autism as a disorder represents a value judgment rather than a scientific fact.



My Thoughts: What was that catalyst that changed my fear to acceptance? Very simply; my children began to defy the definition of Autism that I had been told. This set me seeking.  I sought, and I seek, truth.

I am fortunate to be parenting in a time where Autistic culture is blossoming and I can learn like those parents before me never could. My children are fortunate because, right now, their elders are making huge gains in diminishing the commonly held and false perceptions of Autism and in defining themselves as a people.

The above declaration of what Autism is, written by an actual Autistic person, is remarkable. It strikes me to be that truth I am always seeking. It resonates with many other Autistic people. It defies what we the majority have been told, what we have been telling ourselves about Autism, just like my children defied my ignorance.

I imagine beyond too. I picture those parents of Autistic children that will come after me. What I have had to seek to learn, what Autistics have been fighting to tell, I know it will be commonly held as truth. I envision my children being free to be Autistic, accepted, and appreciated. I predict we will finally understand that no one should attempt to define another.

My humble thanks to Nick Walker and all the Autistic adults defying and defining.
 

Thursday, February 13, 2014

Raising Rebel Souls: #LoveNotFear




I never would have guessed the way this turned out. I don't mean that I never expected to have Autistic children. I mean I never would have guessed that I would be here, feeling the way I do today about Autism. It is true that I started in fear. Oh! I was afraid to begin! My fears were as wide as my ignorance. Empty too. With shaky steps and innumerable questions, the Mother in me set out to move from fear. Still walking this Autism journey, always will. Now, however, I walk in love.

I looked up from my tears and saw my small children. They were quietly turning the pages of picture books. What was so wrong? Why was I over here, in fear? Why were they over there, in peace? That deep breath taken after the crying is over, I took it. The pain I felt, the things I thought I knew, the fear, just did not match the reality of my sons. They were sensitive, affectionate, funny, intelligent, and sure there were difficult times too, but they were not frightening. My children were loveable. Easily so. I was confused, mistaken, misunderstanding Autism. Love kept me moving.

I began to meet the Autistic community, and those places that did not match up to my sons' reality, did not match their Autistic reality either. I realized I would have to reject what I thought I knew about Autism, and relearn from them in order to get any where. I realized I could. I could walk away from fear and into understanding. The Autistic community gave me lessons on the presumption of competence, inclusion, acceptance, empathy, self advocacy, glimpses of their lives to heal my ignorance, to drive out fear. Like a road map drawn from their experience, they loved my children enough to guide me on my way.

All this love changed me. My heart grew fit as I traveled along. No longer could fear enter the chambers of me. Love beats too strong. I set down my conditions because they only blocked the way. I unpacked my ignorance because it pulls in the wrong direction. I dropped my fears one by one because what I have to carry is too precious to fumble. I made room for the love of Autism. I filled myself up with the love for Autistic people. I never would have guessed it, but it's true.

did not have to begin in fear. I should not have been made to. My sons were not made to be feared. My sons are made of love. I know there are Mothers like me just taking their first steps in the journey of parenting Autistic children. I know. I know. I know what they are feeling. May they head in the right direction. May they follow their heart and not their fears. May they love it through. It is the best move to make for themselves, for their children, for all Autistic people, and for us all. May we walk in love together. Love not fear.



The preceding essay was written for the Boycott Autism Speaks sponsored Flashblog, #LoveNotFear.
 
Please take the time to read more. Please Love.
 
 
 


Wednesday, February 5, 2014

Autistic Child: #LoveNotFear

This is a poem that I wrote last April for my Poems for the Autistic Child collection, and I am reviving it in honor of all the children out there who are being harmed, right now, by the pity and fear inducing rhetoric of Autism Speaks. I must say, I am grateful that my children do not yet know. I am grateful for this young time in their lives, where they can live unaware of the damage being done to their people by the largest Autism organization in the nation. I am grateful that their first understandings of Autism, of their own neurology, are being supported with love and acceptance. May all the Autistic children rebel.



More than a Number -H.C.



They say 1 in 50 like they just learned how to count.
You are more than a number.


They measure you down.
You grow up and prove them wrong.


They say Autism Speaks.
You spell it out, N O!


They light it up blue.
You are all colors.


They make believe the story of Autism.
You are the truth.


They got nothing on you.
You got rights.


You got every right in the world,

to be accepted,
to be included,
to be loved.



May they recount,

their own arrears,
their own deficits,
their own lies.



You count.



Visit the Boycott Autism Speaks website.
Sign the petition.
Join the Flashblog for Valentine's Day #LoveNotFear

Friday, January 31, 2014

The #BoycottAutismSpeaks Movement is #posAutive

I have been working devotedly on the Boycott Autism Speaks movement. I am proud to stand in opposition of the "charity" Autism Speaks, which so blatantly describes my family as not really living, but then profits off the heads of my children. I am proud to stand with the dream team of Autistic and parent activists collaborating on this effort. As expected, we have already faced criticism. Most of these reoccurring attempts to derail are centered around the shallow idea that boycott is negative in nature. This notion illustrates one of the major hurdles that we all must face. Perceptions of Autistic people, their lives, their needs, their contributions, are so opposite of Autistic reality, that the non-Autistic majority cannot even imagine the truth. The truth is that this boycott is not negative. The truth is that this boycott is posAutive.


When a group of people comes under attack by a powerful entity determined to eradicate their kind, that's a negative.

When that group of people unites to say NO, stop attacking us, we don't want to be eradicated, that's a positive.


When Suzanne Wright sends out a call to action, telling the world that Autism is a tragedy, burden, and national emergency, that's a negative.

When Autistics and their loved ones come together to share the beautiful actuality that Autism is, that's a positive.


When an organization claims to be serving Autistics, but refuses to include Autistics in positions of leadership in order to guide the care that the organization provides, and instead uses it's power and influence to serve their own non-Autistic agenda, that's a negative.

When an organization serving Autistics is actually run by Autistics, and they use their intrinsic understanding to provide authentic supports and better their own lives, to empower their own, that's a positive.


When the good people of the world want to help, but they unknowingly give their time and money to a "charity", which spends the money unethically and uses it to cater to their own needs, that's a negative.

When the good people investigate how their donations are spent, figuring out that the "charity" is in fact unethical, and then they stop giving their hard earned time and money to that "charity", that's a positive.


I resent having to explain the irony of how Autistic people are perceived and treated, pitied and feared, over and over and over again. I understand that some people are simply ignorant. I know I was in the beginning. I know I still am in ways I cannot imagine. This one is so obvious though. The way Autism Speaks treats Autistic people is inhumane, but because the world thinks that it is Autistics that are less than human, the kind of dangerous bigotry Autism Speaks spreads is perceived as altruistic, as helpful, as positive.

It's NOT.

NO.
NO.
NO.

Don't tell me to say NO nicely, because there is nothing nice or positive or good about Autism Speaks. Don't scold me for defending my own children. Don't shame me for confronting the world with truth. Don't derail me. Don't derail this boycott. Don't lie to yourself and think staying neutral in a struggle for civil rights makes you a positive person. Don't think it is anything more than immoral to get in our way.

Don't ignore the Autistic plea to be treated with dignity and respect.

It won't work anyway.

Good, and love, and positivity always win.

That is the side we stand with.

PosAutive.