Wednesday, April 4, 2018

What is Autism Acceptance?: The “You Keep Using That Word. I Do Not Think It Means What You Think It Means” Edition

I have talked before about the differences between “autism awareness” and “autism acceptance” but I will give you the (somewhat) shorter version real quick:

“Awareness” is lazy.  It requires no action.  It is rooted in ableism and done for non autistic people at our expense.  “Awareness” is self narrating zoo exhibits and violations of privacy and dignity.  “Awareness” is never and has never been for autistic people. “Autism Awareness” hurts.  

In 2011, autistic writer and advocate Paula Durbin Westby started Autism Acceptance Day and Month as a direct response to the harm that was caused by “awareness” initiatives.  Autism Acceptance Day and Month is a celebration of autistic people and autistic culture. It also speaks about ways to create a better world for all autistic people. It is about taking action to change the conversation about autism in our homes and communities.

And in the last few years, I have noticed that more and more people are using the word “acceptance” while still rehashing the same tired, ableist and offensive “awareness”.  Like so many allistics before, they are capitalizing on the ideas of autistic people and changing it to suit their needs. And calling your shitty thing something that isn’t shitty but still actively being shitty is not autism acceptance.  

Here’s the thing, I can call myself a tall person but that doesn’t stop making me be 5’2.   

And words mean things.  

You cannot call yourself an advocate for autism acceptance while speaking over and for autistic people.  If you use “acceptance” while promoting things that harm us such as ABA and other compliance based therapies, posting humiliating and private information about an autistic child or adult without their consent, while using functioning labels and having zero understanding of  or even willingness to learn about the neurodiversity paradigm, then you are not actually advocating acceptance. You are making as much sense as 5’2 me trying to convince you that I am very tall. And you’re still hurting us.

There are many, many misconceptions about what autism acceptance means and who it is for.   And part of that is because of people using words that actually don’t mean what they say.

Acceptance is:

  • Listening to and making autistic voices a priority in any conversation about autism
  • Not insisting that those voices use spoken language
  • Listening to autistic people even when it challenges what you think you know about autism
  • Knowing that functioning labels are useless, ableist and harmful & refusing to use them
  • Understanding that autistic kids grow up and become autistic adults and we don’t stop being autistic and needing support and accommodations
  • Presuming competence
  • Not making assumptions about the challenges and abilities of an autistic adult because they don’t act exactly like a five year old autistic child you know.
  • Advocating for  inclusion in schools, communities, places of employment and beyond
  • Respecting the privacy and dignity of autistic people, including autistic children
  • Amplifying autistic voices, taking a back seat and passing the mic
  • Knowing that being proud of who we are and celebrating autistic people and autistic culture is not the same as ignoring our disabilities and challenges.  It is in fact vital to challenging injustices
  • Recognizing ableism in all it's forms and then confronting it
  • Take all of this, learn from it and use your voice to challenge others and to fight for change

If you are not doing these things, then you are not practicing autism acceptance.

Because acceptance is not passive.  

If you say that you are advocating for acceptance, then you need you to show up and do the work. Create a safer and more inclusive world for all of us. Advocate for our rights. Treat us with respect and dignity.  Do not tokenize or use us to further your agenda. Work with us instead of against us. We need more people who actually want to do the work and if you’re not ready to show up, then stop pretending that you are.  

image is two cartoon narhwals on a dark teal background. 
The top left is a green narwhal with a frowning face. 
The bottom right is a purple narwhal with a happy face. 

Text next to the frowning face narwhal reads: 

"Autism acceptance is NOT: 

no help or support

only for some autistic people but not for others
ABA/Compliance based therapies
using functioning labels
just something that you say"

Text next to the happy face narwhal reads: 

"Autism acceptance IS:

recognizing that autism and disability are part of human diversity

understanding that autistic ways of being are okay
finding supports and accommodations that help me be the best autistic person I can be 
working with me instead of trying to "fix" me
celebrating and being proud of who we are as autistic people
something that you do

Thursday, February 15, 2018

I Don't Think They Really Love Me

This is a hard thing to write. 

But I don't think that many people really love me.

They claim that they do.  They tell me I am great and they love my sense of humor, or my artistic abilities or my way with words.

But when it really comes down to it, they don't really love me.

I see how they blame "mental illness" and disabilities like mine for violent acts.  They will make me a scapegoat with zero facts to back it up and not even care that it's  just not true.

I hear them talking about a "mental health crisis"  and wondering what to do about all these crazy folks!  I hear how they let their friends who say hurtful and ableist things slide.  They don't want to take sides, but they already have.

And they know I am one of those crazy people.   I am not shy about it.  I claim my neurodivergence!  Some even say I do it too loudly.   I have multiple psychiatric and developmental disabilities.  I have some of the "scary" ones.  Dissociative disorder!  I shouldn't be able to own a gun.  Not that I want a gun, but people like me are dangerous.  So they say.  They don't care about the violence done to me by the supposedly sane people around me because I don't conform and I don't comply.  That's not violence because it's for my own good.

They talk about "overcoming" disability or neurodivergence.  When I say that you don't overcome who you are, I am being negative.  I am letting my "mental illness" win!   Because being happy with who I am, that's unheard of for someone like me.

I see how they love my spouse, all the parts of him.  He's "normal".  I see the things they don't think I see.  Lamenting that he has to put up with someone like me.  He couldn't possibly love those uncomfortable and messy parts of me, could he?  I see how they feel sorry for us that my child has inherited some of my disabilities.  They don't think I should have had children. 

They say that our son is great.  He's funny and brilliant and beautiful and amazing.  They like that, but they don't like the parts of him that don't fit into a box.   And I see this.  I know this.  So does he.  He feels it all the time.  It hurts.

He hears them saying that they love him, but he feels that love has so many conditions.   It's something I have felt my whole life too.

I hate that he knows this feeling.   He does not deserve their half assed "love".   Neither do I.

So, I don't think they love me.  Not when they are talking about "treatments" and "cures" and bringing back institutions (which, by the way,  have never left.  Pay attention.)

I don't think they can love me if they want to debate my rights.   This is my life.  This is not something to "agree to disagree" about. 

I don't think they can love me if they want me to "overcome" the things that make me who I am.  The things that are hard for me?  I did not cause them.  I did not make them happen.  My brain wasn't built for this world but I am spending the time I have trying to fix that for my son and for all the people who come after me.   I will change this world, even if it's just a little bit.   But I can't do it alone and I can't do it when everyone keeps insisting that who we are is broken, is less than.  We are not problems to be solved in order to earn your love and acceptance. 

If you loved me, if you loved him, you would believe that too.  You would know this.

They sometimes say "Oh, I'm not talking about you, I'm talking about THOSE people."

I am those people.  Those are MY people.  We are the same.

I really don't think that I am asking for too much.  If you think I am, then you don't really love me. And it hurts the same, even if I've known this all along.