to the autistic people in the crowd

I had made a decision. Before I said anything else, I would say this. Even if it were technically only addressed to 3 out of the 240 people in that room, it mattered. And it mattered that the other 237 hear it.

This is what I said.

Ed note: I did my best to transcribe the words (below) for those who find auditory processing challenging. Any errors are wholly unintentional.

Thank you so much. Thank you for having me here to all of you and Lisa and Maeghan for all of the incredible work that you’ve done here. I hope you guys can take a minute now that you can breathe and appreciate what you’ve done. This is some pretty amazing stuff. Above all, thank you for ensuring that I am sharing the stage with Michele [Gauvin} who will speak for a few moments later. That’s really important stuff.

Typically, when I’m asked to speak, it’s to address those in the room who aren’t autistic.

< Aside > And if you’ll forgive me, those of you who follow Diary know that it’s been a little bit of a crazy week in my world. So I am going to read the beginning of this. I promise you that I will not be reading this entire talk. But I wrote something that I felt was important and I wanted to read it to you.

When I’m asked to speak it’s to talk to those who, like me, are parents, bumbling their way through this messy journey (And I don’t mean autism; I just mean parenting. It’s is a messy journey).

It’s to talk to those who might be allies in our fight for a better world for our children, for all of us, to inhabit. It’s to persuade people in power to shine their light and spend their resources on our community.

But tonight I’d like to start by addressing the autistic people in the crowd. The kids and adults who make up my daughter’s glorious community. Those who likely sit through these things wondering why people like me are the ones talking. And it’s a damned good question.

I am not autistic. I am not an expert in autism. I just happen to be the mother of someone who is both. My voice is not ever, ever meant to eclipse hers or yours, but instead I am here, and everywhere my soapbox takes me, to join you. To do everything that I can to help you share your own voices and to amplify the hell out of them when you do. To fight for the things you need, and so richly deserve, in order to have access to, and a remotely fair chance of success in this neuotypically dominated society in which we live. To help convince those like me who share so many privileges that we enjoy without a thought, that the world from which we will ALL benefit the most is the one that is the least lopsided. The one that is the most accessible. The one in which we can ALL participate.

I’m here to stand with you as you fight for recognition as whole, unbroken, invaluable human beings. I’m here to help in any way that I can.

And I’m here to apologize. To say that I’m sorry that it sometimes takes us parents so long. So long to see the things that are right in front of us. So long to be able to peel back the layers of our own inherent biases that we don’t know we have and to begin to understand that ours is not the only, nor the best, nor even a particularly good method of communicating, interacting, experiencing the world.

To say that I’m sorry that we sometimes sit on our hands while others say things about you in the name of advocacy that hurts you so much. That dehumanizes you. That ostracizes you. That exacerbates every challenge you face.

To say I’m sorry that when people like Robert Kennedy and Suzanne Wright and so many others call you lost and gone and revel in their precious hyperbole, fanning fear into fire, we let you burn in the flames because we are too afraid. Afraid to fight back. Afraid to be wrong. Afraid that if we focus not on changing you to fit the world but the world to fit all of us – and we can’t – that we will have failed you. We are so desperately afraid of failing you.

I’m here to say that I’m sorry that we’ve felt entitled to tell your stories as our own. That we’ve co-opted so much and, clothed in the cloak of our good intentions, rationalized sacrificing your dignity and privacy for some supposed higher purpose that we didn’t know yet could only truly be served by protecting both at all costs.

And to thank you. To thank you for your seemingly endless patience as you wait for us to catch up. To embrace the beauty of a world so much broader than the one we can see. For educating us every day.

 

21 thoughts on “to the autistic people in the crowd

  1. You are right, it does take us a while to catch up and keep up.
    I cannot hear the audio.
    I frequently worry that you may be quite unjustifiably hard on yourself, you are doing great, are you ok? x

  2. My first thought was that what you said was amazing. After further consideration, I realised that it is sad that it amazed me so much. Speeches like these should be commonplace. I wish I was hearing those words from the mouths of all parents of autistic children whenever they take centre stage (which should be less often than autistic people themselves). Thankyou for showing us how it should be done.

    • yes. this. following the lead of those for whom we are advocating should not be a radical act. hopefully soon it won’t be.

  3. Reblogged this on End Autism Stigma and commented:
    In my last post ‘Autistic Voices’, I almost congratulated our State organisation’s (AMAZE) attempt at promoting autistic voices in their ‘SPECTROSPECTIVE’ movie project. I barely discussed that several of the videos submitted and shared were from a carers point of view and sacrificed the dignity and privacy of their autistic children (such as Addie’s video here http://www.spectrospective.com.au/gallery-4.html#). It was disappointing that those few videos compromised the message but I was so used to it that I accepted it as inevitable. However, just today I read this blog post by Jess from ‘A Diary of a Mom’ and I realised that AMAZE could have done better. AMAZE called for autistic voices (stories of autism from an autistic persons perspective) so they should have been the only videos shared. Neurotypical people should not be hijacking our voices they already get most of the attention on the discourse of autism. Neurotypical people could learn from Jess. I could learn from Jess. Keep spreading your words Jess and amplifying ours, we need allies like you 🙂

  4. Thank you for giving me hope today. As an autistic person, I am glad I read this, but it’s for the other 237 that I’m really encouraged. I hope they took it to heart and will try to do better. I hope you have many more opportunities to make this statement.

  5. I don’t often leave comments, but I just had to say that I really love this. I’ve been following you for a while now, and I feel like this post emcompasses all the reasons why your blog is so great. Thank you for being a true ally. It’s an amazing feeling to see more and more Autism Parents™ recognizing the value of listening to and collaborating with autistic people. Thank you for working with us instead of for us, and thank you for normalizing that philosophy for other allistics in the autism community 🙂

  6. Thank you so much for this. ❤ I look to your blog for support when I'm feeling alone. When I feel like the mountains too high for my boy for that day. I am so thankful for you and your blog, you've gotten us through many times to not feel alone. ❤

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