Thursday, March 19, 2015

Full Circle



 I stayed up last night and watched Dancing With the Stars. After Army veteran Noah Galloway danced, I wanted to stand up and cheer.  The judge Carrie Ann Inaba said the very words that rattle me to the core, "You are broadening the scope of what dance looks like."  Yes, yes a million times over YES. Instead of you don't look autistic, say you are redefining what I thought autism looked like. I can't believe that I got to witness that moment of epiphany. Beautiful. 
  My question to you is how do we redefine the world view on autism and all disabilities in such a way that the struggle is both acknowledged and not marginalized. While at the same time opening the eyes of those around them/us see the beauty and potential in that person? Watching the look on her face. That beautiful, "ah, ha" moment. Her world was changed. There needs to be more of that!

#DWTS  #Truth #Autism

Link to a YouTube video of their performance. 

DWTS Season 20 Week 1 - Noah Galloway & Sharna - Cha Cha - Dancing With ...: https://youtu.be/B3KyGXhPrEE



   That is a copy of a post I put on my Facebook page yesterday.  The whole thing got my mind going. One of my fellow blogger Sophie's Mom from On The Train with Sophie told me, "That is what a lot of autistic advocates write about and why I enjoy reading their work- it gives me hope that maybe that is possible." 

    Today, I had my hair appointment. She has been doing my hair for about ten years and has watched my kids grow up. In the process of us chatting my post from yesterday came up. That quickly turned to how she feels about my son.

   I suddenly had a flash back to about a year ago. It was her and me talking. I was telling her about my son's diagnosis.  Her reaction was, wow, I would have never thought. To her he is just him. I remember that I felt like I had to justify my statement.  I quickly pointed out all of his struggles and how hard it was.  I was whining. I completely missed the point of what she was saying. She was saying that my son was him and that was awesome no matter what. Going back to my question, how do we as a society acknowledge and support someone with different needs without marginalizing their struggle?
   There is an elephant in the room when it comes to this subject. It is a big one. One that has to be named before a real discussion can happen. It is autistics against autistic parents.
  On one side is autistics saying that their input as autistic adults is valid and valuable. Really if it were any other disability you would never hear or expect the parents struggle to be apart of the conversation. Or if it was it would be a small part. On the other side is the parents who are saying no you can talk and write so you have no clue what it is like to be my child. There is an automatic assumption that if an autistic adult can advocate, then they are not the same as their child.
   Parents, listen I get it. There is so much that my son struggles with. I don't know what the future holds for him. Some days his struggles look like the tallest mountain that is impossible for him to climb. I, like you, have at times felt like your struggles are being marginalized. You feel like your voice isn't being heard. Also, that all that anyone hears is about what a "blessing" autism is.  That it is all unicorns and rainbows. All the while you are locked in your bathroom so that your child can't hit you again.
  Your struggles are real, the pain you feel is real. There needs to be something done to help you,(us). The reality is that if you took away the autism your child wouldn't suddenly be ok. Your life wouldn't suddenly become , "normal." I'm sorry that you feel like you need to share your nightmare experience with others in order to prove that you aren't crazy. I truly am. It's hard to think rationally when you are sleep deprived and it has been years since you have had a decent night of sleep.

   In my own way, that was what I was doing a year ago to my beautician . I felt like I needed to prove to everyone just how hard I had it.

    What I have concluded is that it is not a helpful or productive path.  It doesn't help you get services or spread, "awareness." It is creating a world that I don't want my kids to grow up in. It is what African Americans fight against, the gay movement and religious rights groups have fought against. Would you expect African Americans, gays or religious people to not be apart of the conversation? NOT including Autistics in the conversation would be unimaginable. Those services, protection and rights? They don't just affect our kid, because they will grow up. They will be the voice for the next generation of children. The voice who will say, yes I can eat where I want, receive medical care, be hired at a job. The voice demanded that all humans be treated... like humans.
   I don't want my son be a victim of a violent crime that gets brushed off because his life has less value. A big organization,(who shall remain name less... hummm kind of like Voldemort... coincidence?),  are the bane of the Neurodiversity movement. They are constantly promoting this idea of autism being an unwanted disease. Once you start down the,"cure" path what are you saying to your child? If there ever were to be a, "cure," it wouldn't help you right now anyway. Ultimately, how are you expect to get real help for someone society deems unworthy of the help?
   I am asking you for something big. Please, take a step back. For those around us to truly be able to see the beauty and potential in our children we must first see it and embrace it. Then we must turn to the law makers and leaders of this country as a united front and demand the tools and services that we need to be successful. As we quickly approach April, instead of lighting it up blue let us embrace the beautiful diversity that surrounds us. Autism is a spectrum I choose to accept and respect every shade.

Graphic From My Friend at: A Legion for Liam! Follow them A Legion For Liam at https://www.facebook.com/ALegionForLiam

1 comment:

  1. here's my page link, if you could please link it to my graphic. https://www.facebook.com/ALegionForLiam

    ReplyDelete