Tag Archives: bias

Discrimination

In Emma’s RPM session yesterday with B. on the topic of discrimination, Emma wrote, “Autism voices have been silent.” (Emma initially typed “silenct and then she edited that to “silent”.)   B. encouraged her to write more, asking her what she suggested.  Emma wrote, “take time to try and learn from us instead of staring at us like we are garbage.”

When she wrote the word “garbage” I felt sick to my stomach. This, from my twelve-year-old daughter.

I remember when my father would call me into his home office to scold me for my latest infraction.  I remember the shame I felt.  I still remember the tingling feeling of rebellion mixed with self-doubt when I noticed the disapproving stare of a stranger upon seeing my outfit – a crop top and pair of cut-offs that I’d smuggled into my backpack to wear to go shopping with a friend after school.   There was shame then too.  But stares like I’m garbage?  No.  I don’t know what that’s like and yet, my twelve-year-old daughter does.  Twelve years old.  Evidently she knows this feeling all too well, as there was no hesitation when she wrote that sentence yesterday.  It wasn’t like she had to stop and think about her answer.  She didn’t pause before pointing to the letter “g”.

take time to try and learn from us instead of staring at us like we are garbage.”

B. had been talking about Martin Luther King.  She had spoken of the civil rights movement and quoted a few things Martin Luther King said.  Emma immediately wrote about autism.  No hesitation there.  I can’t really console myself with the idea that racism and discrimination are no longer an issue in the United States and therefore the prejudice Autistic people encounter will change any time soon as well.  The language has been cleaned up, people know not to use certain words, but the feelings, the feelings of bias, the violence that prejudice and oppression encourage continues.

“take time to try and learn from us instead of staring at us like we are garbage.”

Emma ~ 2010

Emma ~ 2010

Shifting Our Beliefs

“It’s a simple program, but it’s not easy.”  These were the words I remember someone saying to me during those first few weeks so long ago when I entered a 12-step program.  As with most of the things people said during those first few years when everything was still a blur, I heard the words, but didn’t really understand or care what was meant.  Not really.  The slogans seemed trite and silly. I heard them, I read them, but I didn’t pay much attention to them other than to make fun of them.  And then as the days of not acting on my addictions piled up and my head began to clear, as life continued along and I with it, I started to make sense of this phrase and so many more that were said during those early days.

Like everything in life, things are rarely how I expect them to be.  The years since I walked into those recovery rooms have not unfolded as I thought they would.  I am not doing what I imagined I would be doing, my life does not resemble the life I once led nor does it resemble the life I imagined for myself.  All of it comes as a surprise.  Perhaps the biggest is how much I have come to love so many of these slogans that I once viewed with contempt.

The things I learned in those early days of recovery are things I continue to apply to my life now:   “Take it easy,”  “Keep it simple,”  “Practice the principles in all our affairs,”  “Circumstances do not make us who we are, they reveal to us who we are,” “Don’t curse the darkness, light a candle,”  “Compare and despair,”  “We’re responsible for the effort, not the outcome,” “Change is a process, not an event,” “resentment is like drinking poison and hoping the other person will die,” “sorrow is looking back; worry is looking around; hope is looking forward,” “serenity is not freedom from the storm, but peace amid the storm,”  “F.E.A.R. – False Evidence Appearing Real.”

There are too many program slogans to list here, but almost all of them can be applied to every aspect of my life today, particularly when it comes to autism.  There is so much that I feel discouraged by when it comes to autism, what is said, what we are told, what is believed to be “true”.  As I continue to learn, as my daughter continues to write, the farther away we drift from the commonly held beliefs about autism and my child and friends who are Autistic.  I read articles written about autism and Autistic people and I recognize none of my friends, daughter or anyone I know.   The articles and views seem completely disconnected from reality.  I read what so many other parents say and I have to remember to remind myself that I once believed these things too.

Recently someone sent me the link to a book review of Naoki Higashida’s book The Reason I Jump.  The review was written by someone who works in the field of autism and yet was incredulous that Naoki talks with such insight about his social interactions, speaks of feeling ashamed when his body does not cooperate with his mind.  The reviewer wonders aloud what (if any) the implications are for others who are non-speaking and Autistic.  Of everything written about Naoki’s book, this was the review that has continued to haunt me.  Here is someone who has spent his life researching and working in the field of autism and yet, Naoki’s book comes as a surprise.  How is this possible?

It’s possible because those who are in the field have been given incorrect information and then look for verification that align with what they’ve been told.  Yet this bias is not how research should be done.  Until we are willing to accept the idea that maybe, just maybe what we believe to be true is not, we will not be able to believe anything different.  And as a result all of our Autistic children, friends and people will suffer the consequences.

Emma – 2003

*Em 2003

Another Mom’s Comment

This comment from the “On Engagement” post was so beautiful I wanted to share it.  Her daughter is also named Emma.

“I love your Utopian world. I wish it existed. I avoid going to events sometimes because I just don’t want to have to have Emma deal with the looks, or me at times. Her tantrums are nothing like that of a two year old either. She is eight, and carrying an eight year old out of a store spitting and biting and screaming in a piercing , gut wrenching manner gets many looks. One time Emma lost it in a fabric store. I should have known better because it is overstimulating. She loves textures, but does horrible in overstimulating environments. Anyway, it ended abruptly when I had to take her screaming and kicking out of the store. I held onto her for dear life, wishing I had parked closer, hoping no one would see me. I almost accomplished this endeavor when a woman started approaching me as I was desperately getting Emma to buckle her seat belt. I was sure she was coming over to tell me what a horrible mom I was, how social services should be called on me because it felt so violent as I held onto Emma and I imagined it looked violent as well. But instead, she came over and asked if she could hug me. She told me her son was autistic and has been a participant in much worse tantrums and just wanted me to know I was loved. I felt an angel had been sent to me. What a world of difference it would make if people were less worried about judging others and more concerned about helping others. A smile to a parent that is in need can make such a difference. We are all mothers, or daughters, or fathers, or sons. That is something that binds us all. Why not honor that in our daily encounters and help a struggling parent, not shun her, and refrain from assuming.”

Happy Thanksgiving!

For more on autism and Emma’s journey through a childhood of it, go to:   www.Emma’s Hope Book.com