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's Hope Book 
It sometimes feels like we have a long way to go before we see an end to discrimination and prejudice, but I do believe that messages like Emma’s help bring that day closer.
This post also made me think of Emily Ladau’s post about the difference between awareness and acceptance in which she mentions the legacy of Martin Luther King.
Thanks so much Alex and I really appreciate the link. I agree with Emily, awareness does not go far enough.
Take time. This is what we all are learning. Thank you for pointing this out dearest Emma and for showing the world the strength of their stares and how hurtful they can be.
Thank you Bird. (This is Ariane writing here.) Em was too exhausted to respond to any of these comments yesterday.
I will continue to signal boost Emma’s words with her permission and whenever she tells me to.
It breaks my heart that dear Emma has had to experience that hurt. I wish I could wrap my arms around her and let her know that there are plenty of people out here who truly care and aren’t like those hurtful people!
It breaks mine too. She is the most profoundly wise person I’ve ever come into contact with. She is so incredibly kind, compassionate and forgiving. When I feel nothing but anger and disgust, she reminds me to love and be patient and yet it is she who has experienced more hatred, intolerance and contempt than I.
“Take time to try and learn from us instead of staring at us like we are garbage.” — Emma
As Emma typed out this sentence and I was awaiting the final word after “staring at us like___” I was expecting something like “less than” or “stupid” or “babies” which are other things she’s said before to describe her feelings about the way people stare at her. When she typed “garbage” it felt like a punch in the gut. If you know what this feels like, you know how horrible it must be for a child to grow up feeling that people see her this way. If you are parents and know what it feels like for people to look at your child this way, you understand how much anger and sadness we feel. Despite all this, I feel so lucky too–to have a wife who is helping Emma to express her thoughts and let the world know who she really is–and to have a daughter who feels such compassion and patience, even for people who stare at her like “garbage.”
Christ and the Buddha would be so proud of her. We are too.
Yup. So grateful to be on this journey with you, and for holding my hand while we continue along…
I hope that Emma feels that posting her thoughts on this blog cathartic. I believe she will be one of the more well known autsitics one day. And what a message she will give to the world
Everything Emma writes is so incredibly selfless. She wants to help people understand. All of her writing is to that end. I really believe she intends to change people’s perception. In addition to applauding her efforts I am beyond proud of her.
Emma, thank you for saying it. You have me in tears. Last night I took my little girl, just about to turn six, to a children’s group at the church. We’ve been trying as a family to find a community and to open up more. And while the other children didn’t say anything, there were the stares. It was just a small group, I was sitting behind my daughter, and I could feel those stares; it was like a kick in the stomach to me, and I was trying to imagine what it’s like for my girl. The kids weren’t openly rude, but the look just clearly said you are not one of us. And it hurts. It hurts me as an adult and I know it hurt my girl.
People talk all the time about social skills and teaching autistic kids manners. But what about all the other kids? Why are they not taught manners?
Emma you are a bright star, as is my Lily. And the world needs more bright stars like you girls. Keep shining.
*Hugs*
Desi
Oh Desi… (Ariane here)
Yes, I so know those stares, not openly rude, but so obvious. I agree. There’s such an emphasis on “social skills” and yet we, as a society, would do well to learn some of those skills.
Thanks so much for reaching out. Hugs back to you and your beautiful girl.
Oh, but they’re “normal”, and we’re the disabled ones. So we’re the ones that need to be taught “social skills”, and they’re the ones who can go on treating us like the garbage Emma talks about. When you’re different, does it matter to society for you to be stared at, looked down on, screamed at, told how much you’re incapable with words and actions, and then that you couldn’t understand that because you’re autistic.
But, that just means more that we needs to change it. It means those of us who are dealing with it now should be the last who have it this bad. It means that because I’m 24, and Emma 12, she should never have it as bad as I do by the time she’s my age. Will that be the case? I hope so. And hopefully her words help those who are just being born now.
When you are 12 its very normal to be self conscious about your differences, whatever they may be. It’s great Emma, that you can express the way you feel. Please know that you are not alone. Middle school is tough for everyone and lots of kids, even those who are not autistic, think that people are looking at them like they are “garbage.” I remember one of my sons telling me that “people are looking at me all crazy.” He was your age. It’s just because you are trying to find where you fit in. It’s important to feel accepted and to feel that you belong. It’s hard to feel that you are different, but our differences are what make us who we are. Emma, in so many ways you are just a regular kid. The fact that you have autism helps you explore the world with a different point of view. You do have something important to teach, and as you continue to write it will help everyone understand more about how autism works and how you can work with your autism to make a beautiful life. You are already doing that. Stay strong and happy 🙂
Marie, I am sure you mean well when you write – “its very normal to be self conscious about your differences…” but this comment comes across as incredibly dismissive of someone else’s experience, an experience you have no first hand knowledge of, an experience you liken to your non-autistic son’s is a way of silencing her. It is something people do constantly, and I mean CONSTANTLY within the Autistic community.
Don’t do it.
When my daughter writes, “Take time to try and learn from us instead of staring at us like we are garbage.” this is not an example of “It’s just because you are trying to find where you fit in” or her trying to find her place in the world. Do you not hear how incredibly patronizing you sound?
I believe you meant well with this comment, but truthfully, Marie, it is comments like this that make me despair.
That was definitely not my intent, and I don’t mean to be dismissive. I have a lovely 40 year old daughter with autism. She does some typing as well. Her speech patterns and some of her behaviors are similar to Emma’s. That is why I follow this blog. We stopped typing for 20 years due to the controversy over Facilitated Communication. We started to try typing again because of this blog. We have eight adopted children.
Five of them have disabilities. Katrina is our daughter with Autism. She still lives at home with us. Patrick and Alice have Down syndrome, and they still live at home. Our son who has cerebral palsy just recently got married. He is 41 years old. Three of our other children are also married and one is still single. We have always encouraged integration and independence for all of our children. I have found that It is helpful to identify developmental milestones that are on target. When kids become teenagers sometimes its hard to sort out feelings and behaviors that are connected to the disability and those that are connected to being a teenager. It helps our kids with disabilities to know that in a lot of ways, and in most ways, they are very much like every other person their age. Having an us and them attitude isn’t usually helpful. We are all one human family. If you would prefer, and if she is willing, I will have Katrina communicate on this blog from now on.
Reblogged this on Walkin' on the edge and commented:
This post is very important for every parent of an autistic child to read, especially parents of non-speaking children. And I wish Autism Speaks would think about this when they put together their fearmongering videos with parents saying they feel like killing themselves and/or thier children IN FRONT OF THEIR CHILDREN.
Into The Woods: Children will Listen (lyrics)
Careful the things you say, Children will listen
Careful the things you do. Children will see and learn
Children may not obey, but children will listen
Children will look to you for which way to turn
To learn what to be.
Careful before you say “Listen to me”, Children will listen
Careful the wish you make, Wishes are children
Careful the path they take, Wishes come true, not free
Careful the spell you cast, Not just on children
Sometimes a spell may last, Past what you can see
And turn against you. Careful the tale you tell
That is the spell. Children will listen.
Thank you PK.
@Marie It really, really *isn’t* the same for everyone, and what she’s experiencing is *not* just because she is 12 and being 12 is hard.
She really is facing that level of hate, and it’s coming from grown adults too, and that weight is really, really hard to bear.
Don’t trivialize it.
“She really is facing that level of hate, and it’s coming from grown adults too” Yes. Exactly. Adults, children… everyone. All the time. And yes, she feels it. All of it.
Thanks for this, Josiah. Really appreciate it.
Thanks for taking it seriously. I wish someone had when I was that age.
@Marie It’s not just because she’s 12. It’s also because most people she encounters have active contempt for autistic people.
The weight of that is hard to bear.
Don’t trivialize it.
“The weight of that is hard to bear.” Yes. It really, really is. Thank you for saying this.
My comment was totally misinterpreted. And where is the hell on earth where most of the people a child encounters have active contempt for people with autism? We have been living with our daughter for most of her life (since age seven) and we know there are some ignorant and thoughtless folks out there, but honestly, most people in our several communities where we’ve lived, from New Hampshire, to Kentucky, to Indiana, have been kind, supportive,and encouraging toward Katrina and our family. I would never say that most of the people she encounters hate her it’s just plain not true.
Marie, no one is saying anything about you, your daughter or anyone else in your family. This is in response to my daughter who has stated, quite clearly ““take time to try and learn from us instead of staring at us like we are garbage.” Those are MY daughter’s words. This is HER experience. No one has suggested otherwise. Please. Stop. Really. Just stop it.
OK then. I am very sorry to have hurt your feelings by sharing my own experiences at a time when you and your daughter are feeling so overwhelmed. I don’t want to add to your pain. I mistakenly thought that since my children are grown, I might have a perspective that could be useful. I guess times are different for you, and the world is a lot meaner than I thought. I hope you will forgive me.
Also, my response was to Josiah, not you. Do you really believe that “most of the people” your daughter encounters “have active contempt for people with autism?”
That’s been my experience as an autistic person. Have you not noticed how people look at us when we move funny or can’t get words out or have to leave a room because the lights hurt or cover our ears because it’s too loud?
Or how when someone kills a disabled kid, everyone tries to explain that it’s not evil, it’s just an unfortunate thing that happens because of how awful it is to take care of folks with disabilities?
Or how there’s a whole month dedicated to telling the world how much we suck?
I’m surrounded by contempt and dehumanization all the time. And it’s awful.
Hi Josiah,
Thank you so kindly for responding to my post. It’s very sad that you feel so marginalized. I hope that in spite of everything you have found ways to find joy in life, and that you have a good support system of people who are in your corner, encouraging and strengthening you. If you don’t mind my asking, how old are you and what do you do for fun? I have been trying forever to find a spare time activity that would be fun for my daughter, Katrina. In the process I have learned lots of wonderful things. I have learned to play six musical instruments trying to find one that she might like. I learned to weave and knit and make origami paper figures. She loves to listen to music especially Rap and she likes watching TV, lately she likes soaps, She does do some puzzles but only if there is a nice snack afterwards. Katrina can use speech to have little conversations about things that are happening in her life, but she doesn’t do what you did on this blog and talk about her feelings or deepest thoughts. We are trying to encourage her to type and she seems to be beginning to to that, but it’s hard work and she doesn’t really enjoy it. I probably have driven her nuts because she is sound sensitive and I am really into making my own music, but she never complains. She is 40 years old, a full grown woman, and I am still trying to help her. She is a wonderful daughter and friend. She does have some interesting behaviors, but most people are kind and friendly toward her, and they understand when she is having a hard time. It might be true that people are generally more understanding of women having autism than they are of men, I’m not sure. Anyway, if you could tell me about yourself, I could show Katrina your post and tell her about you, and it might encourage her. Thank you again.
Sincerely,
Marie Brennan
Don’t be afraid of anything becuase she will hadle it!
I cherish these lessons and look forward to them daily. Em, please know your words are being respected and passed on through many actions in Tennessee. We are listening. Thank you both . We know your teachings take lots of time and work. You ladies are making a DIFFERENCE.
Thank you Lois. Really, really appreciate your words, this comment, your friendship. Love to you and Barb.
For those who have seen the last flurry of comments on here, I have deleted them. That is one of the benefits of having a blog. I can do that at my discretion. What was written goes against everything I believe. Words were exchanged. It was unfortunate, but they were hurtful and destructive. There are so many places one can engage in those sorts of conversations, this blog isn’t one of them. I am sorry if people feel they’ve been silenced. I am open and happy to have people disagree with me. Please look at other posts where you will see all kinds of comments taking place. I try hard to honor everyone’s voice even those who disagree. However, my daughter and anything she writes and asks that I put on this blog is off limits. You may come after me, but you may not question her. Anyone and I mean anyone who does so will be blocked. Immediately. Thank you.
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The hunger of the predator for innocent blood; the contempt of the self-styled righteous. Self-deification raises itself up upon the backs of lesser beings.
They spit in your eyes,
Urinate in your mouth,
Shed dung on your back,
And burn out your eyes with hatred.
No, it is not just me – not now. Nor is it Emma, or those others who will not be silent – their list is long, and growing longer.
Listen:
“How does one man assert his power over another, Winston?”
Winston thought. “By making him suffer,” he said.
“Exactly. By making him suffer. Obedience IS NOT ENOUGH. Unless he is suffering, how can you be sure he is obeying YOUR will and not his own?…
Power is in tearing human minds to pieces and putting them together again in shapes of your own choosing… Ours is founded upon hatred…
But always – do not forget this, Winston – always there will be the intoxication of power, constantly increasing and constantly growing subtler. Always, at every moment, there will be the thrill of Victory, the sensation of trampling upon an ENEMY who is helpless.
If you want a picture of the future, imagine a boot stamping upon a human face – Forever.”
Orwell, 1984.
Orwell is thought to be describing politics. He is not – he is describing human nature at its most base – its most primeval – dare I say it, at its most Archetypal – with is emphasis upon maximizing its social dominance at all costs.
When the Normal sees an autist, he sees “a fight he can *easily* win” – one who is (socially) more or less *helpless* – one who his fellows will gloat over when he plants his boot square in our (individual and collective) faces.