Faces

Another child is dead.  Another parent is getting sympathy as if the life of her beautiful Disabled child meant nothing.   

It happens so often, too often.  

We are told to walk in their shoes, the parents, the murderers.   Over and over the pattern repeats. Their shoes, their excuses, are flung around, insulting the memory of the deceased.  Nobody cares about the victim’s shoes.  They are Disabled, they can’t have shoes, they can’t have value.  They don’t deserve to live.  

In 2012, Melissa Stoddard died.  (TW, child abuse in that link) She was Autistic and her father and stepmother tortured her to death.  She was eleven.   Others spoke of her passionate and enthusiastic nature.  I always wanted a daughter, and I always thought if I had a daughter, she’d be a lot like Melissa.  Maybe that is why I think of her so often.  

Of all the murders, of all the names on the list, Melissa Stoddard has been the one whose face I see most often.   Descriptions of her make me think of my own son, but also of me at her age.  Pictures of her haunt me, her eyes so large, so pretty and seem so full of curiosity and wonder.  I have a hard time looking people in the eye, but I think that eyes are gorgeous.  Dark brown eyes like Melissa Stoddard’s eyes, so bright and beautiful.   Her smile makes me think it would be hard not to smile back.  Impossible, even.   I see her face a lot.  And I am not normally good with faces, with recognizing people, especially those I don’t know in person.  Her face though, it is one I will never forget.   

Before Melissa Stoddard was brutally murdered, I cared about disability issues.  I cared about autism acceptance.  I talked about neurodiversity, I talked about a better way to parent Autistic children, more respectful ways to think about Autistic and Disabled lives.  I cared a lot.   But when Melissa Stoddard was murdered, something inside of me changed.   

I knew that talking wasn’t enough, but I didn’t know what to do to help make the lives of Autistic people better.   It was too late for Melissa Stoddard, and too late for so many others.  

My local community is very small.  The library that I run is even smaller.  There are times when nobody wants anything to do with what I am offering, which is acceptance.  It’s what I think is a better way.  Learning from Autistic adults, learning from Disability activists and advocates who have been changing the world behind the scenes for so long.  Most people don’t know anything about Disability History.  They know even less about such things as Disability Pride, Disability Justice and Rights.  Many people even laugh at me or tell me I’m a terrible mother for teaching these concepts to my Disabled son.  Because to them, disability is shameful, it must be “overcome”.   To me, and to my son, it is a source of pride.  And I know it can be to you, to your kids, to our communities.  

I get discouraged at times, because these ideas are still seen as somewhat radical.  The negativity I face, it does hurt.  A lot.

The times I get discouraged, I see Melissa Stoddard’s face.  I will always see her face, because her life mattered.  I see the faces of so many, and now I will see the sweet face of London McCabe too.  I wish I had seen their faces as adults, as activists, as advocates, or just as everyday people who are living their lives the way they wanted to.   

But I can’t.  

And that breaks my heart every day.  

Their lives deserve to be celebrated. I want to live my life honoring theirs. In my own small way, I hope that I am able to do that, but I know that it will never be enough because I can't bring them back.

A 10 Year Old Talks About Disability Pride.

October is Disability History  Month in Washington state.  For homeschool, we talked a lot about Disability Pride and at the end of the month, were lucky to be able to go to Bellevue College to see Lydia Brown speak.   These are my son's thoughts on Lydia's speech, and all that we talked about during the month:  

My Thoughts on Disability Pride and Seeing Lydia Brown, by F:  

One day, I went to see Lydia Brown at Bellevue College.   Lydia Brown is Autistic and a student in college.  Lydia is an activist for disabilities.  They talked about Disability Pride and other stuff about disabilities.   

They talked about how people view disabilities.  They talked about how some people think disability is something that needs to be fixed.  Some people see the absolute opposite and say disability is natural.   I think I am natural.  

They also talked about pride.  I think Lydia would be in favor of how proud I am to be Disabled.  

I think Disability Pride is pretty cool.  We can do stuff that people don't even think of.  

Autistic people can have the power to change the world.  I can change the world by inventing things.  Or I can be the next president.  

People who say you should not be proud because you have a disability are total and complete jerks.  I want people to know that so those jerks think twice about what they say.  

It is a lot good to be different.  I think I am different sometimes.  I am Disabled.  

My favorite part about the talk was that I was allowed to move around during the talk.  Some people don't like that, but they were allowing us to move around.  They were pretty accepting of the way people move around.   

My mom showed me this quote by Neil Marcus: 

"Disability is not a 'brave struggle' or 'courage in the face of adversity'.  Disability is an art.  It's an ingenious way to live." 

I think that means disability is not to be made fun of but to know that you have power.

An open letter to the Dr. Phil Show......

An open letter to the Dr. Phil Show,

Your response to the criticism of your interview of Kelli Stapleton from those of us in the Disability and Autistic Rights Community is disappointing, but unfortunately, not surprising.

“The Dr. Phil show is proud to continue to shine a much-needed light on autism spectrum disorder, continuing a 13 plus year commitment to educate the American public about the challenges faced by these children and their loving families.”

Your first point completely invalidates the existence of Autistic adults.  Autism doesn't end at childhood and there are numerous Autistic adults out there, speaking their truth.  If you had listened to any of the criticism of your interview with the attempted murderer of Issy Stapleton, you would know that.  

“It is important to separate the need to condemn the outrageous behavior of her clearly emotionally troubled mother, while remaining sensitive and sympathetic to the frustrating plight of all parents with autistic children who struggle in their quest for services, help and resources.”

First of all, we do not do autism to other people.  We are Autistic.  It is our neurology. The fact that there are few services is not our fault.  We do not exist to frustrate you, or to make you struggle, or to have our very existence described as a “plight” on our parents.  If you want to talk about lack of services, talk about the lack of adult services.  Because in comparison to services for families, we have nothing.   Or better yet, talk about the QUALITY of services in relation to how they respect the dignity, autonomy and neurology of Autistic children and adults.  Because very few services are about us and supporting us in meaningful, healthy ways that respect the agency and autonomy of Autistic people.   So, if you want to talk “services” talk about that.   

And if you’re going to talk about services, you better damn well make it a separate conversation from incidents where parents and caregivers abuse and murder us.  Lack of services does not excuse abuse or murder.  It just doesn’t.  Attempting to tie the lack of services to these incidents is giving these abusers and murderers excuses.   It will happen again, as it has happened over and over to Autistic children and adults.   

Melissa Stoddard

Alex Spourdalakis

George Hodgins

Damien Veraghen

Vincent Phan

Randle Barrow

Daniel Corby

Katie McCarron

The list goes on and on and on.   The list keeps growing because society keeps finding excuses to make sure that Disabled lives are disposable lives.  

“The victim in this particular situation is, of course, the child. To suggest that anyone associated with the telling of this heart-breaking story believes otherwise is insulting, absurd and irresponsible…

This reckless rhetoric is counter-productive to the battle to make gains on both research and treatment levels. To anyone who has actually watched the program in its entirety, our views on this issue were clear, and intended to provide a complete understanding of Kelli Stapleton’s mindset.”

I am angry.  You give a voice to our abusers, but you silence those of us who are tired of the excuses.  We are tired of being held hostage to the “services” you want for us.  We are tired of having to watch our people being killed, abused, held up as examples of tragedy and what-you-have-to-put-up-with.  You erase our humanity and reduce us to inconvenient objects that exist solely to burden those around us.  Yet, you call us “irresponsible”.  

You claim that you want to tell a “heart-breaking story” but you only told one side.  The side of the would be murderer.  The side of the person who publicly held her child up to be ridiculed and humiliated.  Who filmed her daughter at her weakest, most vulnerable moments, the moments where she needed her mother to understand her the most, and made it all about HER own feelings.  You ignored the hours and hours of intensive behavioral interventions that Kelli Stapleton even bragged that therapists begged her to back off of.  Did you ever wonder what those types of behavioral interventions do to the recipient?  Did you ever wonder WHY Issy lashed out?  

Behavior is communication.   Always, always, always.    

When a child is lashing out with aggression and frustration, you try to find out why.  When that child is Autistic and has impairments in the ability to communicate, you give that child the tools to communicate in whatever way they can and you LISTEN.  

Was Issy given the tools to communicate more effectively?  No, she was given “behavioral interventions”.  She was given forced compliance.  She was given endless hours of ridiculous drills to force “indistinguishability” on her.   Her neurology was not respected.  Her disability was not accommodated.  She was not supported appropriately.  Is it any wonder she lashed out?  Remember, she is a CHILD!

“As Dr. Phil stated during the broadcast commenting on Ms. Stapleton’s decision to another desperate mother … ‘Ending the life of your child, even if you sacrifice yourself in the same act, is just simply not an option. It’s just not something that you have the right to do…”

Your actions speak louder than your words, Dr. Phil.  You sympathized with Kelli Stapleton.  You called her “desperate”, her story “heart-breaking” .  Her story, not her violent and abusive acts. Her story, not Issy's story.

Kelli Stapleton was not a mother “desperate” to accommodate and support her child.  Kelli Stapleton was a mother who was desperate to have a non-Autistic child.  Don’t you forget that for one second. Because Issy can’t.  Those of us who have stood in Issy's shoes, we will not forget either.

Lastly, how DARE you tell us our rhetoric is counterproductive?  HOW DARE YOU?   

You did not even listen to the criticism of your show.  Clearly, since you did not address any of the points that Autism and Disability activists tried to bring to your attention.  If you did listen, you would know that “research and treatment” is not what we need.  We need support.  We need accommodations.  We need for people to stop celebrating our murderers and abusers by sympathizing with and broadcasting their side of the story while  dehumanizing and devaluing our lives.  

We matter.  Our lives are more than how we make you feel about Disability and Autism.   Our lives are our own.  We have thoughts, feelings, interests, abilities, challenges and personalities that matter.   Stop talking about us, without us.  Stop ignoring and silencing our voices.   

If Issy Stapleton were a typically developing child whose mother tried to murder her, would you even be trying to find a reason or an excuse?  Ask yourself that question and then tell me whose rhetoric is reckless and irresponsible.  

Who Would Want A Disabled Child? I Do.

I watched Dr. Phil's interview with Kelli Stapleton today.   I was not sure what to expect, honestly.  But.... I was definitely not expecting the colossal amount of victim blaming that happened.   Words like "broken" (in reference to Issy Stapleton), "mercy killing" and "loving mother" were tossed around as if Issy Stapleton did not have a life worth living and as if a loving, devoted mother would document a pattern of abuse and humiliation for the entire world to see.  As if a loving mother would methodically plan and carry out an attempted murder on her child.   What kind of society do we live in when children are demonized for not  having the tools they need to communicate, and mothers are held up as examples of loving and caring parents for the ultimate act of aggression on their child? 

One comment I heard, not on the show, but from an acquaintance was "Well, who would want a Disabled child?" 

Me. 

I wanted a Disabled child.   

I wanted my child from the moment I knew he would be.   

I wanted my child from the second that I saw his beautiful, perfect face.

   

I wanted him when he wouldn't sleep for more than twenty minutes from birth due to undiagnosed (at the time) sensory processing disorder.   I wanted him when he cried and cried because he couldn't handle the overwhelming experience of noises and sounds and colors and touches in this world.   Oh, I was tired.  A lot.  But I wanted him.   

I wanted my Disabled child when he tore apart every newspaper in the house and silently put them back in order when he was 1.  I wanted him when he flapped and giggled with happiness at putting all of his cars in order from one end of the house to the other.  

I wanted him when he didn't talk and all the doctors were concerned and I first heard the word "Autism" whispered under their breath.   As he learned to sign and use picture cards, never saying a word....I wanted him then, too.   When he was frustrated, angry and scared because he could not communicate with words like his brain was trying so hard to do.....I wanted him.  

When we were told "your child will not fit in here" at our neighborhood school, I wanted him.   I saw his spark and his passion, when all they saw were "behaviors".  When they said "not normal", I saw "exceptional".  And not in an inspiration porn-y way, but in the way that his gifts, his strengths, they overwhelm me.  They fill me up and sometimes it's hard to look at him without tears because I just have so much love for this amazing and wonderful child.  I am so lucky, and he is so, so wanted.  

When his life is complicated, as Disabled lives can be, I wanted him.  I want him.  When the world is pushing us, I will stand with him and we will push back together.  Because I have never been so sure of anything as I am about the value, the beauty, the WORTH of his life.   He is wanted.  He will always be wanted.   

And this is my promise to my beautiful, Autistic, Disabled child:  You have always been wanted.  You will always be wanted.  I will want you when you are difficult, I will want you when you are "non-compliant", I will want you when you have an attitude with your mother, I will want you when you don't even think you want me.   My love for you is unconditional and there is nothing that will break that.  You have fundamentally changed my life for the better.  Sometimes, parenting you is hard, and that is because parenting is a humbling experience.  Parents don't know everything.  Even though we both carry the label of Autistic, I don't read your mind, and I recognize that you are your own separate person.  A person that I am so, so proud of.   A person who is growing and learning and changing every single day.   I am better for you having been born. This world is better for you having been born. 

To every Disabled person out there who is reading this, who have felt the burden of ableism and oppression because society thinks that the problem is who we are, and not the lies they believe about us.  To every single one of you who has felt unwanted, unloved because you are different, or your needs are more complex than people know how to understand.   Please know that you are wanted too.  You are needed.  I want you in this world because you make it better than it could ever possibly be without you. 

Autism and Activism in Our Family

Huffington Post Parents has been running a series of articles and essays on "Autism in our Family" featuring a variety of different perspectives on parenting Autistic children from parent bloggers.  None of the essays I read were actually written by an Autistic person.

So, being the complain-y pants I am, I sent some e-mails about this.  I was told that I could submit something myself if I felt so inclined.  I did submit something, but it was not selected to be published there.   So, I figured I would publish it here instead:  

Image is purple scratchy background with white dandelion on the right.  

White text outlined in black reads:  "Autism in our family is activism.

Because the alternative is self-defeating."

When people say autism is different in everyone, I only can think, "Of course it is!" 

Autistic people, like everyone else, are human beings with their own interests, abilities, challenges and personalities. What we have in common is a shared neurology that makes our experience of this world very different from the majority of non-Autistic people. Even in that shared neurology and many 

similarities, our experiences of this world are still unique to each individual. 

I am an Autistic parent to an Autistic child. A Disability activist, an advocate, a writer, an artist, a wife, a homeschooler, a valuable member of my community. I am all of those things because I am Autistic, not 

in spite of it. 

Every day, my son and I face discrimination and stigmatization for being openly Autistic. For all the "awareness" that is so popular now, there is very little understanding and even less in the way of authentic inclusion. We both need a lot of support in this world, and getting that support without being 

faced with a lot of hostility and resentment is difficult. 

Still, we press on. 

We are inspired and encouraged by Disability activists who came before us and helped to provide us with the rights we do have now. My son and I read stories together about Ed Roberts and other Disability Rights activists who were fighting long before the ADA. 

Together, we read the poetry of Amy Sequenzia. My son loves poetry, and has a deep love and admiration for Amy, a non speaking Autistic activist, writer and someone who I have the honor of calling my friend. Amy is someone who inspires a sense of pride in my little boy through their shared neurology. 

Through the internet and technology, my son has been luckier than I, to find his tribe at such a young age. He has Autistic friends and mentors that give him a sense of connection and meaning when the rest of the world is not so kind. I am forever grateful to my Autistic community for being a part of our 

"village". 

Autistic culture, and Autistic pride, those things are imperative to who we are and where we are going. 

They are so important to my husband, my son and I that we decided to share the stories of Autistic people with our entire community. We collected books and films from Autistic authors, filmmakers, and artists to lend to those in our community who seek to understand the Autistic experience. We created an Autism Acceptance Lending Library.   Autism in our family is activism because the alternative is self defeating. 

It is a deep yearning to make the world a better place for people like us to live in. It is fueled by an intense desire to bring about understanding and social change. Most importantly, it is motivated by love. Love for who we are, and where we come from. 

In the words of my friend Neurodivergent K :

"The way I love? It is deep. Autism is deep love. People write it off as special interest or obsession, but even if it's not something I can excel at, I can excel at loving what I love, loving what I do, loving who I love. Autism is being able to be consumed by love and interest, it is giving 100% because it is an insult to the thing one loves to give any less. Autism is going big or going home."

This is Autism in our family. 

A 10 Year Olds Thoughts on "I Love Being My Own Autistic Self" by Landon Bryce.

One of my son's favorite books is "I Love Being My Own Autistic Self" by Landon Bryce.  It is also a favorite of mine.  When people come to the library, it is one of the first books I always recommend to them.   I would tell anyone who was new to a diagnosis of Autism to get this book!  It is so important to understanding the concepts of respect and neurodiversity.  Too often, books are written about Autism without even considering how Autistic people think or feel.  This book is so wonderful because it actually addresses how it feels to hear some of the damaging and false messages that seem to be so prevalent when we talk about autism.   It is easy to understand, with bright and colorful graphics.  It is perfect for older kids and to share with your entire family.  

Review by F, aged 10:

I kind of liked Vector. He’s the main character and I always like the main character in a story as long as he’s not a villain. Vector is an Autistic hero. He explains about Autism. There is actually no villain in the story, but his sister sometimes acts like one.

Vector mentions the spectrum of autism. Autistic people are sensitive. Some to loud noises, as I am.

Marko can’t talk. But Marko can communicate. Some people at my old school communicate by keyboard because they could not talk.   Sometimes, I like to type more than I like to talk too.  It is easier.  

Marko has a lot to say. I think he knows thousands of things. Not talking doesn’t mean you don’t know a lot of things.

Dr. Chip is another character. He is a scientist who studies Autism. I like that he studies Autism. I would hope he would talk to Autistic people like me to understand.

I like how it says Autistic people can be great friends with animals. Like dogs and cats. I think that is true for me. I am perfectly good friends with my dog and cat. Animals helps me feel calm.

I like this book. I like being Autistic too.

I like being Autistic because I think that’s why I’m smart. I am very sensitive to things. I am good at remembering things and I like how I act. Stimming helps me to be calm and it feels good.

There are hard things about being Autistic. Bright lights are hard for me and they are everywhere. Noises are loud and it makes me pretty afraid and I feel like it will go on forever. Sometimes, people don’t understand me or disapprove of the things I like. That doesn’t make me feel that good.

People could understand me better by listening to me. People can understand Autistic people better by listening to all of us. We have a lot to say even if we don’t say it by talking.

Library Book Review of "My Voice: Autism, Life & Dreams" by Amy Sequenzia

My son shares his thoughts on another great book we have available at the Ed Wiley Autism Acceptance Lending Library!   "My Voice: Autism, Life & Dreams" is a book of poetry by Autistic activist Amy Sequenzia.   My son loves poetry and Amy is one of his favorites:

"My favorite in the book is “Respect”.   One of the reasons I like this book is because the poet has disabilities, like me.   For one thing, we are both Autistic.  It actually makes me feel good.  I guess you could say that we are both pretty smart.  

“Respect”  teaches what is the name of the poem.  Sometimes, she might not feel respected.  Sometimes, I feel that way too.  I think she knows that she is perfect the way she is.  Maybe people without disabilities don’t think that about us.

I think she might be correct about “seeing beyond the cover of my being”.   I don’t think people should judge people because they have disabilities.  I think we want to make friends with people and would be a good friend. " 

From "Respect" by Amy Sequenzia

I am who I am and I hope to be respected

I am all my abilities, including my disabilities

I expect to be heard

To read more of Amy's writing, check out her blog: Non-Speaking Autistic Speaking