Sunday, March 30, 2014

Why "Awareness" is not enough

Many years ago, I thought that any conversation about autism was a good thing.  I thought that the  more people who knew about autism, the better and easier it would make my life and my son's life.  You see, we are both Autistic and it's not always been an easy road when faced with the ignorance and judgments of other people.  So, seeing people celebrating Autism Awareness in April seemed like a "Really Good Thing".  

I slowly came to an understanding and appreciation of the huge difference between autism "awareness" and autism acceptance.  

Awareness means that the rhetoric surrounding autism is dominated by people who are NOT Autistic.   Parents, professionals, even siblings.  

Acceptance means that  you don't just ask for our input but you recognize that we are going to lead the conversation. 

Awareness means that there is going to be a lot of misinformation.  Because the people creating "awareness" do not have the lived experience of being Autistic.  Often, they don't even consult with us when talking about us.   

Acceptance means  respecting diversity, valuing our humanity and recognizing and appreciating our place in the community and as experts on the Autistic life experience. 

Awareness means "othering".  

Acceptance means authentic, meaningful inclusion.  

Awareness talks about how hard it is to deal with us, as if autism is something that happens to anyone other than the individual.  

Acceptance means that my Autistic life experience is just that.  MY experience.  

Awareness talks about the difficulties and barriers that I face, without acknowledging the role of society in creating those difficulties and barriers in the first place.  

Acceptance means that supports and accommodations are a given because my value as a disabled person is not in question.  

Awareness is shame. 

Acceptance is pride. 

So, when we talk about the difference between awareness and acceptance, it actually is a pretty big deal.  Awareness is not something that helps me.  It doesn't help my child, or my family.  It doesn't help my community to want to include us.  It doesn't help our schools want to stop isolating and segregating our children.  

Awareness makes you feel good for a few minutes because you think you did me a favor by acknowledging my existence.  

So, isn't any acknowledgement or "awareness" educating people about autism??

 I've never met a person in my life who when given the information that I am Autistic says: 

"Autism, what is that??? I've never heard of such a thing!  If only I were aware that it existed before!"  

However, I am CONSTANTLY bombarded with things like: 

Functioning labels

Disbelief because I am not like Rain Man

The latest quackery intended to fix me

Parents comparing their minor children to 30 something me, an adult woman

Sympathy for my allistic husband for "putting up" with his Autistic wife and child

Disbelief that I am unable to do some life skill type things because I can do other life skill type things

People assuming I have "moved past" autism because I am married and can talk

People thinking I'm an asshole for trying to explain these things because it disturbs their privileged viewpoint

Thanks, "Awareness"!  

And it goes on and on and on to the point that some days, I don't even want to interact with other humans.   I don't have that choice.  And I refuse to hide who I am or try to pass for someone I am not.  

There are those who will still say that there is no difference.  This,  in spite of our repeated attempts to tell you that this is just not true.  You will say that "Awareness" is good enough.  

Except, it's not.  

 When you see the difference, how can you still pretend it is?  When you see Autistic people cringing at the very concept, how can you still stand by and tell us that is all we deserve?  


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