being heard



{image is a photo of Lydia and Brooke. Lydia has one hand on Brooke’s shoulder. Her other hand is holding a fork above a plate of food, which Brooke is apparently eyeing. Coincidentally (or not?), Lydia’s t-shirt reads, “Got a Story?”}

I am a proud autistic of color working with the Autism Women’s Network to create the first ever anthology of writings by autistics of color about our lives, our experiences, our histories, our communities, our struggles, our passions, and our resilience. Our stories deserve to be told both for us and for future generations that will come after us. 

Lydia Brown, writing HERE

A couple of days ago, I shared the words of Phillip Reyes, a nonverbal eleven year old boy who, just two years ago, began to find his voice through the use of a letter board.

“I am spreading hope to other autistics that they can live meaningful lives,” he said. “I am always learning and improving my skills. I have hopes for becoming a writer and advocate for autistics. Now I can tell my story.”

Phillip’s words have yet to leave me. “Now I can tell my story,” he said.

That’s the goal, isn’t it?

The ultimate prize?

Not just to communicate, as every human being does in his or her own way, but to be understood. To be heard.

And so it is that I am asking you all to join me in supporting a project that will help our friends be heard.

Their voices matter.

Their stories matter.

There must be a record of their existence.

A chronicle of their stories, their history, their present, our future.

For themselves.

For our children.

For all of us.

This morning, I woke up to a comment that a mom left overnight asking for help. Her sixteen year-old autistic son is struggling with feeling different. She didn’t know what to do.

As part of a much longer response to her, I wrote, “I think there’s no better salve for the soul than finding out that we’re not alone in our experiences and finding others’ stories we recognize as our own. Perhaps you could introduce him to Wrong Planet or ASAN where he can chat with other young autistics online and create a community of his own where he’s not so different at all.”

The conversation catapulted me back to words I wrote nearly five years ago now.

Someone will say, Fine, so you talk to them about common characteristics and help them understand their challenges, but why do you need to put a LABEL on it?

She’ll spit out the word LABEL as if expelling a sip of turned milk from her mouth. LABEL.

I’ll ask why a name has to be a bad thing. I’ll ask if we can’t reclaim it for our children. Reframe it completely. Give it to them – make it theirs to define. I’ll find a passion stirred, the sleeping giant opening one eye and peering around the room. I’ll try to contain him.

I’ll ask a question of my own.

What if we could bring these kids TOGETHER? What if, instead of labeling them per se, we can give them a tool with which they can identify themselves and EACH OTHER? What if the label is a gateway to the monumental understanding that these kids are NOT alone? What if this group – this incredible group of people – this group that can so easily feel so desperately isolated from their peers – what if they found out that their differences, in and of themselves, are not so damn different after all?

I’ll try to rein it in, but I’ll fail.

I’ll turn to the woman who asked the question. I’ll leave her with one last question in return.

Can you IMAGINE the possibilities?

This morning, I answer my five-year old question. Yes, yes I can. In fact, I don’t have to imagine it at all. I see it every day. I see it in the incredible community of autistic adults with whom I’ve been so blessed to connect over these last five years. I see it in their strength, their love, their resilience, their energy, their creativity, their unwavering dedication to calling out injustice and changing a dangerous status quo. And I want to do everything I can to make sure that they have the chance to be understood, to be heard, to document their own history.

So that my girl and so many like her may always know there is a place, has always been a place, where she’s not so different after all.

This matters.

Please click HERE to read more and to help make this project a reality.

For my girl.

For everyone like her.

For all of us.

Thank you so much.


6 thoughts on “being heard

  1. Is there a way to email Lydia Brown? I am desperate for help with a level of disability discrimination I never thought possible. Even if it’s not her …. any ideas on advocates to contact would be helpful

  2. Pingback: Markierungen 09/08/2014 - Snippets

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