credible

It’s Saturday morning. Boston Ballet is holding auditions for the Nutcracker. Hopeful little ballerinas gather, line up, and are shepherded in various directions to go do whatever it is that they do.

They are color coded, as it were. The littlest in light pink leotards, the slightly older girls in pale blue. All of them have their hair drawn back into the ballerina’s signature: a high, tight bun. Given the number of children milling about, the place is startlingly quiet. There is a delicacy, a gentility to the whole affair.

Brooke is in the studio with Mr Gino. Her adaptive dance class stands in stark contrast to the quiet constraint of the children outside. As Mr. Ryan sits at his drum set pounding out a rhythm, one of Brooke’s classmates makes her way across the room, every single part of her body abandoned to the beat. She bucks and runs, leaps and spins. She drops to the floor and smacks it with her  hands, then springs into the air, her arms overhead, her hands flapping their love of dance, movement, freedom. The other dancers wait for their turn to take the floor. Everyone – every single person in the room, is smiling. The room is electrified by visceral, unrestrained joy.

Two teenagers make their way together through the waiting area. Arm in arm they thread a path through the lines of pastel leotards and high, tight buns. They are wearing the uniform of the adaptive program that Brooke wears — the black Boston Ballet t-shirt and black dance pants. It looks as though one is leading the other, but it’s hard to tell. They must have come from one of the other studios as I’ve never seen them here before.

They walk to the water fountain and one tries to turn the handle. To save them some trouble, I tell them that the water fountain hasn’t been working for nearly two years. I tell them that there’s one downstairs and another one upstairs. They nod and walk away.

A couple of minutes later, they return. A woman has now joined them.

They walk to the water fountain and she tries the handle. I look up at her from where I sit by the studio window and tell her, as I did the girls, that the fountain doesn’t work.

Laughing, she says, “She told me that it didn’t work, but I didn’t believe her.”

It should be a small moment. It’s a water fountain. Perhaps she simply thought they didn’t know how to use it.

I smile and nod toward the girls as I say, “Well, next time believe her. She knows what she’s talking about.”

It might have been a small, disposable moment. I might not have carried it with me, turning it over and over again in my hands days later.

But for the smile.

One of the girls looks at me and her face lights up into a smile.

There is something about that smile. I try not to read too much into it, but, my God, whatever it is, it feels big. Bigger than big. Momentous.

Is it relief?

Later I will write,

I watched a scene unfold this morning at the ballet studio. It appeared to be a small moment, but as we’ve learned together here, there is no such thing, particularly in the life of a child.

The scene, “forgettable” as it may have seemed, wended its way into my soul, where it continues to sit – heavy, unsettled, nagging. Its telling deserves far more than a Facebook post, and so I will give it its due on the blog when I can write it out in full. I have no choice really. Some stories simply must be told. But in the meantime, I have to say this ..

Please, please, (I’m begging, please) do not let a disability – of any kind – discredit a human being. When a person, particularly a child for whom communication is a challenge, but ANYONE, tells you something, in whatever form they are able to “tell” you, believe them. There is no more destructive message than, “You are not capable of or deserving of being believed.” Because when we don’t have faith in them when they tell us something small, we have taught them that they won’t possibly be believed if they ever need to tell us something big.

#PresumeCompetence
#ItMatters

The woman will turn away and, with a shrug, say, “Go figure.”

My heart will silently shatter into a million pieces – one for each time our children are told every day in these (not) small, (not) subtle, (not) insignificant ways, that they are not credible. That their voices don’t matter. That until a non-disabled person says exactly what they just said, it isn’t real, it isn’t truth.

The implications are disastrous.

And terrifying.

So much of what I say on Diary every day is exactly what autistic and otherwise disabled advocates have been saying for years. It’s not new. It’s the same wheel – still round. Please, click on the blogs over there to the right (or below on mobile devices). The ones listed under the heading Vital Perspective from Autistic Adults. Read their words. Hear what they have to say. Don’t wait until you hear it from me for it to be real.

It’s already truth.

And ultimately, it’s not me that I want you to believe.

It’s her.

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Image is a photo of Brooke at last year’s rehital. (not a typo) She is dancing with a boy in her class. Her feet are not touching the ground.

24 thoughts on “credible

  1. Thank you for sharing. It has added a new perspective for me.
    I read the facebook posts after to mentioned this situation. Someone said to look up presume competence so I did and found much helpful information.
    At its heart it makes so much sense. We are making tentative steps to returning my son to school. It is a big move but the right one. This time fingers crossed they may be a few people to help.. One of our biggest hurdles is around handwriting… So I am putting together a profile showing what he can write and what he can type…He is a creative little soul and so much would be lost if we continue to demand that writing is the only means of functional communication within the school setting.
    Thank you for all you share. You encourage and inspire…
    Thanks to all who join in the discussions and share…It helps,,,,
    Peace

    • There is absolutely no reason for any kid to need to write with a pencil and paper anymore. So many of our kids either use scribes or technology to convey their thoughts. Pencil and paper will be obsolete so soon anyway in a school setting when everything is replaced by a tablet of some sort. Our kids are just ahead of the curve;).

      • Exactly and so are their parents for helping to change the perspective. There is a great youtube video called the ‘ case against assistive technology’ which should be required viewing for many educators…etc…

  2. Just because her child is a bit different she didn’t believe her? That is so very sad to me! I feel so bad for that poor child whose mother can’t even trust what she says enough to believe something so small!

    • Jennifer, The woman wasn’t her mother. She appeared to be one of the helpers from a different class. Still not okay, but definitely not her mom.

  3. Big mix of emotions – ball in the pit of my stomach, sting of tears in the eyes, and the mama bear wanting to maul something.

    People complain about “the kids today” and all that stuff, but it starts with the adults. And not listening to the children consistently, regardless of neurology, where do they think that gets us?

    I’m glad you were there, and in my fantasy, that person told the parent the story and the parent requested a new helper.

  4. Reblogged this on Walkin' on the edge and commented:
    Parents / adults – regardless of neurology – LISTEN to children. WE are the building blocks of their future, and their trust in us is the foundation we build – or don’t. The choice is ours.

  5. The point is well taken. You have a way to see what others don’t really see and to use it for such important points.
    What a great advocate you are for yours and others.
    Love you….
    Dad

  6. Thank you for the constant reminders. Especially when it’s to give credit where credit is due!

    When my daughter was three and a half, we were at a laundromat. She tapped me on the arm and told me that “that lady is taking our basket”. Not having seen the lady come in I assumed that she simply had an identical basket and told my daughter so. But my pumkin was insistent, and I kept shushing her so as not to make a scene. The lady left…indeed with our laundry basket. My daughter had seen it all, and had done her very best to tell me, and I didn’t listen. I could’t care less about the basket, But I learned a very powerful lesson about listening to my children and believing them. I apologized to my daughter, and in her sweetness she easily forgave me. But I have held that lesson close ever since. And I am a better, not perfect, but better listener to my, and other children now.

  7. “So much of what I say on Diary every day is exactly what autistic and otherwise disabled advocates have been saying for years. It’s not new. It’s the same wheel – still round. Please, click on the blogs over there to the right (or below on mobile devices). The ones listed under the heading Vital Perspective from Autistic Adults. Read their words. Hear what they have to say. Don’t wait until you hear it from me for it to be real.

    It’s already truth.

    And ultimately, it’s not me that I want you to believe.

    It’s her.”

    Yes…This….this is what I was trying to say to an autistic friend a few weeks ago when I was trying to write something for him, but at the same time felt that people should just listen TO HIM. As usual, you were able to put it into words much more eloquently…and with less curse words….you rock.

  8. Once again you have touched upon something I have recognized happening to my own son but could not articulate why it bothered me. Last year on more than one occasion, his teacher would tell me that Ben had said something but she knew it “could not be true.” In every single instance, Ben had told her the truth. This should be required reading for all!

  9. Reblogged this on AmandaQuirky and commented:
    This is the first time I’ve re-blogged anything; not due to any shortage wonderful entries worth re-blogging, there are loads of them, but because I know me–once I’ve started, I’ll want to do it ALL THE TIME. I’ll set some boundaries for myself later, but for now, enjoy my first re-blogged post. It’s about a lesson we all have to learn when we become parents; more so, perhaps, when we parent children who are not neurotypical; and also, it’s a lesson each one of us has to learn to apply across society, with regards to any people who are not like “me”.

  10. This touched me so much it brought tears to my eyes. My mother did this to me over and over again throughout my childhood – only believe it when someone else says it. It hurts. She still does it actually and I’m 39 now. They didn’t even know that I had Aspergers then of course, it was just dismissal of a child. I still haven’t told her about my diagnosis because she’d dismiss that too. Also, nothing turns a child into a liar quicker than never being believed when they’re telling the truth.

  11. I’m sharing these comments on this particular post because it was part of the assignment I gave:

    Jess: Here is the set up for the assignment I gave my teacher education students:
    Please read the following blog posts:
    Phillip Reyes- a nonverbal 11 year old:
    http://goldenhatfoundation.org/about-us/blog/167-communication-is-power%20 (Links to an external site.)
    Barb Rentenbach (Links to an external site.) – an autistic, nonverbal adult author
    http://emmashopebook.com/2014/04/10/barb-doesnt-talk-emma/ (Links to an external site.) (with video)
    A post about Presuming Competence…a view from a mom/advocate/author with an autistic daughter
    https://adiaryofamom.wordpress.com/2014/09/29/credibility/ (Links to an external site.)

    And respond to this question:
    How has the video watched in class today and the blog posts linked above changed your perspective of both autistic individuals and those with any disability? (Includespecific examples from each to discuss the impact on your views.)

    **Here is a link which provides information about the play the students had to watch. It is an amazing work which provides (in my opinion), just “enough” to begin to open the minds of those whose understanding of autistic individuals is at the most basic or stereotypical level. The playwright is currently working to get this piece published.**
    http://www.morningsun.net/article/20140423/News/140429901

    Here are just a few of the best responses:
    After watching the video in class and reading the blog post, my view and perspective of both autistic individuals and those with a disability have changed tremendously. I see these individuals very differently now. I take a step back and think that just because they aren’t like me doesn’t mean they are incapable of thinking and doing things. It made me think that maybe I need to have patience and consider living in their world and mind. I liked the part in the video where the parents were talking about their son right in front of him, and they acted like he wasn’t able to hear them. It made me realize that just because someone doesn’t answer or respond in the way that I would doesn’t mean they don’t understand what is going on or what is being said. It made me actually sad for him, because he felt very trapped and alone since he couldn’t relay what he was thinking in a way for his parents to understand. Also, like with Philip, just because someone doesn’t speak as their way of communicating doesn’t mean they don’t know how to communicate. We as teachers need to seek out and try and find a way that best suits that student’s way of communicating. Another thing I also took note of was in the Barb blog post it talked about how Barb and Emma worked hard to become more independent. I think this proves that people with disabilities can succeed, however, it’ll just take them longer to do and more hard work. So, treat them as you would everyone else. They can work hard like others to accomplish goals. Their goals might be smaller, but they are still succeeding at something meaningful in their life. The last blog post also made me shed a tear. It made me realize how often children (disabled or not) get put down or are un credited for something they did, say or performed. It is saddening. Half the time people do not realize they are actually hurting a child’s self-esteem and might not even mean to. However, they do and that can honestly hinder a child from performing or speaking whatever it was they did again. Especially in disabled children. They already don’t have a lot of self-confidence, and whenever they get put down it just makes it worse. So as future teachers, we always need to step back, be patient, and consider how the student is feeling, thinking, or why they are acting the way they are. It might actually make us grow as a person as well as a teacher, but it will definitely change that students life forever if we aren’t quick to count them out.

    I have been greatly impacted by getting to know a boy named ******* who has autism. I was his nanny this summer, and he completely took everything that I thought I knew about this “disability” and threw it out the window. He is seven years old, and struggles with communication and social interaction. Although he has to get past these hurdles daily, he is extremely talented. Being in his presence was life changing. Reading about these three people’s experiences and watching the play brought me back to working with ******. I feel like so many people, including myself at one point, do not give these bright, creative people enough credit. They are capable of amazing things, we just need to “presume competence”. I looked up the phrase after reading the first blog; it basically means that we should assume that a child has the intellectual ability and desire to learn and assert themselves. As teachers, we should hold the same high standards for all of our students. Also, we need to realize that there are different forms of communication, and who are we to say that one way is better than the other. Finally, being an open, caring, and loving support system for a child with autism is important. Philip found that in Soma. From my experience, the child wants to be talked to, not at. They are functioning people with feelings; they do not want their disability to define them. It takes time to build that trust, but it is worth it the effort.

    I’m ashamed to say that before watching the play and reading the blog posts it never would have occurred to me that people who have autism are capable of thinking the same way we do and can be extremely intelligent. The problem is that their bodies or mouths don’t always cooperate with what is going on in their minds. I’ve never really had any experience with anyone who has autism, but I would hope I would treat them with respect and patience just like I would anyone else. Autism changes people’s lives and while it hasn’t made an impact in my life, I would hope that if it had people would treat me or whoever had it like I was capable of doing anything. I know that there are limitations depending on the severity of their autism but that doesn’t mean we should expect anything less than their best. Watching the play broke my heart when they were treating the students who had autism like they didn’t matter or werent worth their time. The trick is to stop trying to get them to see the world like us, when we should be trying to see the world the way they do. Not having ever spent time with someone with autism I think the play and the blogs have really opened my eyes to how they want to be treated like everyone else. In Barbs blog she talked about how she has things that she wants to say and do but her body simply won’t allow it. All people want is to be treated like they are worth your time and to not feel like s burden. Seeing how Barb, Emma, and Phillip write about what they think is indicative that they know what is going on in their surroundings and would like to be able to talk to you but they can’t. As educators we need to make sure that if we have an autistic student in our classroom we treat them as any other student and do not talk down to them as that would imply you think less of them than any other student.

    Before reading the blog posts and watching the video in class, I didn’t really think much about kids with disabilities and how they personally feel. I know it isn’t always easy for them but I never realized how bad some of them feel or how poorly they can be treated. One thing that stood out in the video in class was the child who was trying to talk to his parents and they kept talking for him and didn’t ever listen to him. It was kind of heart breaking because I know there are probably so many kids going through that and no child should have to go through that. It was hard seeing all the kids go through something that put them down. Reading Phillip’s story and how he uses blogging as a way to communicate is inspiring. He didn’t let being autistic stop him from much after he learned he was in control. As a teacher, it’s important to find ways to communicate with children if they don’t want to verbally, there are other ways they are comfortable with. Hearing Barb’s story and how she feels being autistic is interesting. Helping her try to get her point across since her body doesn’t always follow what her mind is saying would be important. It would be hard to categorized as she is “not normal looking” That isn’t an easy stigma to get away from and there’s always going to be people who don’t realize she’s autistic. The quote “that they are not credible. That their voices don’t matter. That until a non-disabled person says exactly what they just said, it isn’t real, it isn’t truth” is talking about the kids who have disabities and they aren’t given enough credit so it makes me want to really give credit to them as they accomplish things. They’re able to do more than people think they can and proving them wrong would be a great feeling for many, especially the student. Watching that and reading all the blog posts makes me aware and really want to help students with disabilities. It makes me want to do my own research on things that way I am fully aware what the child is going through.

    The video and blog posts have shown me that those with autism are not intellectually disabled, nor are they unable to understand what is said to them. In the video from class, they frequently say that they are trapped in their own bodies. Talking to them louder will not help the situation nor make them instantly become verbal if they are nonverbal. It is the same for others with disabilities. They are trapped in their own bodies and forcing them to try to communicate with us will not work. We cannot bring them to our world, we have to go to theirs. In the blog about Phillip, it says “She challenged me to picture my life differently.” Not everyone can communicate with someone with autism in a way that they will understand. These individuals need to understand that it is okay to not be able to see their life the same way that we do. We have to be able to adjust our expectations so they know they can adjust theirs. One thing that really stood out to me about Barb’s story was that she was shown a way to communicate that worked for her. Phillip uses a story board whereas Barb is able to type. They find what works for them, just like everyone else. We all have to find what works for us. Finally, the post about the dance mom had one comment that stood out to me the most. She said, “Please do not let a disability discredit a human being.” So often people do not think someone with a disability can give advice or things they say need to be backed up by another source. They are human beings just like everyone else. They know what is going on and have feelings. Discrediting them does not make them feel any more confident about their abilities. These resources have reinforced the mentality that you just have to adjust your thinking when trying to communicate with those with autism or disabilities in general.

    Thank you for helping me to change the perspectives of our future teachers and hopefully impact exponentially more lives and children as they enter their future classrooms!

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