I'm Not A Hero For Loving You

Recently, I was scrolling through my Facebook feed and a page that I had “liked”, a special education advocacy page, shared this image:

 

(image:  Cloudy/blue sky background with blue text that reads: “Special Needs parents are the equivalent of Batman, Captain America and the Incredible Hulk combined with a side of Mary Poppins).  After text is image of small umbrella.

I left this comment:  “ I'm not special or heroic because I love my disabled child. I don't think it feels very good to be the disabled child who people think only a hero can love either.”

The page then responded to me:

“Many people feel many different ways about being the parent of a child with a disability. Not anyway is right, Not anyway is wrong.”

Okay, but your feelings about disability are never more important than the dignity and humanity of your child.  You can feel however you want about disability.   However, we live in world where casual ableism in journalism, the media, among politicians, even advocacy organizations that purport to serve us is so very pervasive, why on earth would you join with those who see us as less than?  Why would you take their side over your child’s?

Imagine what it must be like to see that as a disabled child.  Your parent couldn’t possibly love you without super powers or magic?  What the hell kind of message is that sending?  Do you think that you will help disabled children become accepted, loved, valued when that is how you talk about them?  

I love my kid and I am not a hero.  I face ableism and hate with him every single day because I know that we are a team and I will always fight alongside him against the things that make his life harder.  Who he was born to be, disabled, autistic, that is not a problem.  The problem is how other people look at him as less than, who judge him based on the labels he carries and don’t think those labels could ever possibly be a source of pride for him.   

If you parent a disabled child, you are not a hero.  You are not Captain America (who by the way, was disabled himself).  You are not Batman or Mary Poppins.  You are not the Incredible Hulk (An incredibly inappropriate and frightening comparison given the amount of abuse that disabled people experience from parents and caregivers.)   You are a person parenting a child that deserves respect. A child who deserves to be loved for exactly who they are because you see the value and beauty in them. Just like any parent should do. Your child's disability does not exempt you from that. Because your disabled child is beautiful and valuable and amazing exactly as they are.  They need to hear that. They need to KNOW that.

I shouldn’t have to tell my child that I am not a hero for loving him.  But I do.  Because he sees images like this and it hurts him.   So, I sit him down and tell him that picture….one from a page of an organization that claims that they want to work for his civil rights is dead wrong.  I am not a hero.  I am just an incredibly lucky human who won the kid lottery by getting the privilege of raising him.  

The truth is that my child is a hero for putting up with bullshit like that every single day and still managing to be proud of the amazing, autistic, disabled person he is.   It’s not an easy task in this world.  

Also, here, I fixed it for you:

(image:  Cloudy/blue sky background with blue text that reads: “Special Needs parents are the equivalent of Batman, Captain America and the Incredible Hulk combined with a side of Mary Poppins text is struck through with red lines.  After text is image of small umbrella. Alternate text reads: Parents of Disabled kids dont' deserve a cookie just for doing their job.).  

What I Want The Entire Internet to Know About What It's Like To Be Married to a Non-Disabled Person:

This is what it would look like if The Mighty published essays about those of us who live with "non-disability".   It's ridiculous and offensive, but when we do it to disabled people, it's okay? 

I don't think so.   

Here is my "The Mighty" style essay about living with non-disability.:

Image: dark purple background with green round filigree frame.  Green text inside of frame reads: "It must be hard to just do the normal, every day things in your life without inspiring people or giving them the feel goods!"

My spouse isn't disabled, but that doesn't stop him from living his life.  Every day, he is not disabled and he gets up, goes to work, helps out around the house and co-parents our child.  The fact that he doesn't have a disability does not bother my disabled child or myself (who is also disabled).  He goes to work and nobody is inspired by him.  It must be hard to just do the normal, every day things in your life without inspiring people or giving them the feel goods!  

When a disabled person goes to a restaurant and eats a meal alone, you have to constantly be on alert that someone will take your picture or try to join you and then post about how awesome they are on social media. Awareness!  It's so powerful!  My non disabled spouse can go to any restaurant and order food from the menu, sit by himself and not one person will be inspired or "aware" of him.  It must be so hard for him.   But, when you love someone you put up with the fact that they are unable to inspire people for existing or eating food at a place that literally only exists to sell food to people.  

It's sometimes hard on those of us who love him because he just exists and lives his life like a normal person.  When my child and I do the same things, people act like we are shitting rainbows because we're so god damn inspirational.  Not my spouse though!

Nobody accuses him of being "exceptional" or gives him numerous accolades just for occupying the same space as them.  Because my spouse lacks disability, and is an able bodied neurotypical person, the world pretty much caters to him.  He has no need to find creative solutions to the problems encountered by inaccessibility.  He can just go to a place and things just kind of work out for him.   Neat!

It can be hard to live with someone who lacks disability, but we make it work because he has a good attitude about it!  Even though he is non-disabled, he accommodates for it by learning about ableism and not being a colossal fucking asshole to disabled people.   

I am NOT My Child's Voice!

Many parents claim to be their disabled child's voice.  I am not that kind of parent.  I am not my child's voice.  I have never been my child's voice.  

Please read this:

YOU ARE NOT YOUR DISABLED CHILD'S VOICE.

Read it again.

You.  Are. Not. Your.  Disabled. Child's.  Voice.

You are not.

Are you a ventriloquist?  You are still not your child's voice.  

Are you a magical being who can force people to speak your will?  You are still not your child's voice.

Your child has a voice.   Stop ignoring it.  

Stop co-opting it.   

Stop making your child's disability all about YOU. 

_

When my child was a tiny baby and cried out when he needed something, he had his own voice. 

When my little one was nonspeaking (until he was about six), he had his own voice.   He pointed.  He signed.  He used picture cards.  He complained. He resisted.  He smiled.  He laughed.  He cuddled.  He pushed me away. He was non-compliant.  He communicated.  He had his own voice. 

When my child loses language, as he sometimes does because that is a not uncommon thing with Autistic people.....he has his own voice.  

He types.  He writes.  He points.  He signs.  He uses picture cards.  He complains.  He resists. He smiles. He laughs.  He cuddles.  He pushes me away.  He is non-compliant.  He communicates.  

This is his voice.  

Even when it is not a speaking voice, this is his voice.  

It is not my voice.   It is his own.  

_

My child and I have the same disabilities.  

I am still not my disabled child's voice.   I can sometimes understand him in ways that non-disabled parents do not understand their disabled children, but I am still not my child's voice.  

I will never be his voice. 

He has his own.

It is my job as a parent to help him advocate for himself, not to advocate in his place.

It is my job as a parent to make sure his voice is heard and respected.  Even when other people do not understand.  Even when people will try to tell him that I am his voice.  Because I am the grown up and the parent, that does not give me the right to speak over him or for him.  

I will never be his voice.  That is his and his alone.   I refuse to take that away from him.  

Why I Dislike The Mighty & Better Alternatives for Parents....

Many people confuse parent support with disability advocacy. Those are two separate things. This is why sites like The Mighty are so problematic. You can't complain about parenting a disabled child in the same space that you claim to want to uplift and inspire people about disability. The narrative of tragedy surrounding the experience of parenting disabled children has real life consequences for disabled people. If you want to serve our communities, you must not tell our stories without us and with so little respect for us. If you want to help disabled people, learn about ableism, learn about injustice, learn about ways to make the world better, fairer and more inclusive for us.

Disabled voices MUST be central if you are interested in advocacy. Disabled voices MUST be the priority in any conversation about our lives. Parents and caregivers are important and if they feel that they need support in their journey, it can never come at the cost of our humanity. If your support is toxic, it helps no one. It certainly doesn't help the disabled child you are parenting and it also hurts you, and your relationship with your child.

There are lots of places that are interested in parent EDUCATION, which is different from support, but in the end, that is what is going to make you feel the most supported. When you learn from the real experts (disabled people), you are going to find the kind of peace that you just can't find from a group of people sitting around complaining about disability and who view their children as burdens.

Disability is a natural part of the human experience. That's from the ADA (Americans with Disabilities Act). I say this a lot, but if a quarter century old piece of legislation is more progressive than you, you've got a lot of learning to do.

One of the reasons disability activists are so critical of parent centered spaces is because we are the ones living with the consequences of our lives being portrayed as burdens and tragedies. We don't want your kids to grow up feeling that way. We want better for your kids because they deserve it.

So, I don't like The Mighty, and I don't like a lot of parent centered spaces that think that we need to see "both sides" when one of those sides is literally arguing for our own lives. Disabled children and adults deserve to be respected and to be able to live our lives with dignity. We do not deserve to have to defer to a parent's "right" to complain about their lot in life. Disabled lives have value and we need to start remembering that and believing that.

As I said before, there are spaces online for parents to learn. Places for parents to get support in parenting by taking a seat and listening to the real experts.... Support that does not come at the cost of their child's humanity. Some spaces that are doing it right: Ollibean

Parenting Autistic Children With Love & Acceptance

Autism Women's Network (a community by and for Autistic women, but parents are welcome visitors)

Down Syndrome Uprising

Respectfully Connected

In addition to that, there are TONS of disabled adults blogging and talking about their lives. You just need to look and you'll find them.

Behavior Plan For Parents of Newly Diagnosed Autistic Children

A Behavior Plan For Parents of Newly Diagnosed Autistic Children.

Your feelings about autism are constructed by living in a world that fears and stigmatizes disabled lives.  Your distress about an autism diagnosis are most certainly  because of these unhealthy messages.  Please remember that your behavior in regards to your child’s diagnosis is a choice.  Signing this behavior plan means that you will always put the dignity, autonomy, and love for your child above buying into the dominant narrative of tragedy or the belief that autism is something that the Autistic person is doing to you.

• I promise to never use my child’s most vulnerable moments for sympathy or to “raise awareness”.   I recognize that I am my child’s safety net against an often hostile world.  When I feel like sharing, I will ask myself if this is something that I would want others to share about me.  
• I will never blame autism when I have a hard time parenting my child.  Parenting is stressful at times, but rewarding as well.  This is true for ANY child and I will recognize this.
• I will prioritize the voices of Autistic people over the “experts” as I recognize that Autistic people are the ultimate experts on their own lives.  
• I will throw out the myth of a “developmental window” and acknowledge that my child will grow and learn in their own time, in their own way with my love, guidance and nurturing.
• I will never apologize for my child being openly Autistic.
• I will look at every therapy offered to my child with a critical eye.  I will ask myself what is the desired outcome?  Is it supportive or is it attempting to change my child’s neurology? I will never force my child into therapies that vow indistinguishability or that seek to “fix” or promise a non-Autistic version of my child.
• I will embrace the neurodiversity paradigm and celebrate my child as a beautiful part of the wide and diverse spectrum of humanity.
• I will learn about the social model of disability and confront ableism when I see it.  I will learn about the disability and autistic rights movements and use my privilege to further the cause.
• I will learn about Autistic culture and find Autistic friends, not just for my child but for me as well. I will  promote acceptance and lead by my example.
• I will learn about identity first language and show my child that I am proud of their Autistic identity.  
• I will NEVER say that I love my child but not their autism.  I will recognize that autism is an integral part of who they are and shapes how they view, process and experience this world. I will love every part of my child.  I will never teach them shame  or internalized ableism.  
• I will presume that my child is competent and understands more than may be apparent. I understand that communication is more than speech and I will support my child's communication in any form. * 

• I will never fight autism, but I sure as hell will fight for their right to be exactly who they are in this world.  
• I will recognize that I am only human and I will make mistakes along the way.  I will forgive myself and do better.

For a printable version of this Behavior Plan, click here.

Image: Green background with dark text that reads:  Behavior Plan for Parents of Newly Diagnosed Autistic Kids https://goo.gl/WPpnrp autistictimestwo.blogspot.com

*Thank you to Ann Littell for this contribution to the Behavior Plan!

Whole Body Understanding Resources

I have been selling these posters I that developed to support the library.   I've decided to also make them available for free to download and print for anyone who would like to use them for non-commercial purposes or to advocate for themselves or their child.   I have two versions of the Whole Body Understanding poster, one is autism specific and the other is aimed at other neurodivergent learners.

You can click here for the Whole Body Understanding: Autism poster

You can click here for the Whole Body Understanding: Neurodivergent Learners poster

I still sell them on my little Redbubble shop, but I would like for them to be more widely available to help others who want to use them to promote acceptance and to support students of ALL learning styles in respectful, positive and empowering ways!   If you like them, and have the ability to support the library, I'm always accepting donations too!  But if you can't afford to..... then, that's why they are free!

Why I #BoycottAutismSpeaks

The reason I speak out against Autism Speaks is because I love my Autistic son.  I love him so much that he has forced me to love myself too.  If you are not Autistic or otherwise Disabled, you might not know what it is like to grow up with these messages of hate and fear and people treating you like you're nothing but a horrible burden on society.

You hear about what you cost, you hear about how if you could just act a little less Autistic, people would like you so much more.  Even those of us who grew up without a name for what made us different....we felt it too.

So you start to lie.  You pretend that if you just keep trying, you can be as normal as everyone else.  And you work so damn hard at it.  They put you in social skills classes, or therapies to try to make you just like everyone else.  You try.   But at the end of the day, you know it's a lie.  When they tell you "Great job!", they are congratulating you for a lie.  They are telling you that who you are, it's not okay, but if you just keep trying to not be that person, to not be Autistic, to not be so damn embarrassing all the time, you might be acceptable someday.

Someday.

But it's never enough because the price you pay for not being your authentic self is just too high.  So you learn to hate yourself. You learn to wish you weren't you.  You learn to settle for people treating you like dirt because what else do you deserve?  For some of us, that never changes.   For some of us, for me, it's a constant work in progress to love myself.

But I love my son and he's like me.  We are the same, but different.  I don't want him to think that he can't be the person he was born to be.  He was born perfect and he makes my life worth living every single day.  I can't express to you the love that I feel for him because I don't even think there is a word invented for that kind of love.  I just know that loving him has helped me to accept myself too.  Loving him has opened my mind and my world to such amazingly wonderful things.  Loving him has helped me to find community, to find my people.

He has given me so many gifts and blessings, and again, I don't think there is a word in this language to accurately describe that.  It is so overwhelming and beautiful to have him in my life.

So, when I see a group saying that they are speaking for him, but talking about his life as a tragedy, a burden, a cost to society....that tells me that as his mother, I am "barely living".  No.  I do not accept that because it is so far from our reality and our lives.  He is love.  He is never hate.

Autism Speaks is hate.  They have no business talking about my amazing Autistic son like that.  They have no business talking about my friends like that.  They have no business talking about ME like that.

So, I will continue to speak out against hate.  Because I love my son.  I love my Autistic friends and I love myself.  Finally.