Sunday, August 10, 2014

The longest response to a comment ever...

A thoughtful comment was made on my last post.

The text of the comment from stillfinditsohard (a blog that I have followed for some time) has been copied verbatim here:
"I wrote at about this admittedly important but much shorter than it needs to be step. I think it is worth the effort for both your good self and your audience to read what I have to say.

Patting the back of Build-A-Bear when they appear to have only done half a job is not going to do us a favour. Okay, so you have one less (out of thousands) of reasons to fear for your child.

What about those of us who can and do speak for ourselves, and do not live in America? What about us? And that speaks to the most profound division there is between the "parent of a child with autism" bunch and us, the autistic. You get all the attention, we end up suffering because you either jump guns or fail to think through.

Build-A-Bear's severing of ties to Autism Speaks FNA is a good thing. But until they go out of their way to let _all_ of their customers know why, and sever all ties with _all_ anti-autistic hate groups, autistic people everywhere have no reason to celebrate.

The Irish political party that was essentially a part of the IRA had a name that was and still is instructive for the autistic civil rights movement. Sinn Féin, an Irish phrase for "we ourselves". Sam might be a small child now, but there will come a time when he is the same age that I am now.

Thirty years from now, the way in which parental "advocates" behave, the way the movement cheers at a job half-done, and the way the movement fails to understand we are essentially at war, will have people like Sam taking up the same cry. Autistic people want to be spoken for and about by only one group of people.

We. Ourselves."
My comment was too long to post, but I felt really deserved a thorough answer, so I have written it out here.

Hi Dean.

Thank you for taking the time to post. I have read both your comment and your post carefully, and think that you bring up many important points. I really would like to answer them, but first want you to know that your words, feedback and criticisms/critiques are welcome here. I have followed your blog for some time, and have nothing but the deepest respect for your words and opinions.

On to your comment:

You are absolutely right- this is only a small step on Build A Bear's part. I absolutely believe that they owe the Autistic community a public announcement and acknowledgment of fact that this corporate partnership was harmful and wrong.
In my post, I do call on them to do this and, as many others have also done, have reached out them to on their social media platforms and through their email. There is still work to be done.

However, as with all civil rights movements, it is important to acknowledge when steps are made- particularly when these are the results of grassroots efforts. We need to do this both for the offending parties to see that we are sincere in our efforts and genuine in our advocacy. We also need to do this for ourselves. There will always be a much larger fight to fight. But without celebrating the battles, and taking the time to lick clean our wounds, we will not have the resilience it takes to continue working. We have witnessed this with various civil rights movements across the globe. No one oppressed group has fully succeeded in escaping their oppression. Women are still battered and beaten. Racial minorities still discriminated against. The disabled still dehumanized. Rectifying these wrongs and building a better world is a continuous act that occurs in multiple fronts, parallel to each other and working in different ways.

You also raise some points about the Parent of Autistic Child vs. Autistic Person debate. I assure you that I agree with you 100%. It is saddening and tragic that the voices of parents are elevated above those of Autistics of all ages and all abilities. It is my absolutely intention to do everything I can to continue supporting Autistic voices so that mine can fade into the background, where it belongs. I have consulted extensively with my friend Autistic self-advocates on the conflict between wanting to help spread the message of Autism/Neurodiversity Acceptance (I fall heavily into the latter category) and wanting the Autistic message to be resoundingly and overwhelmingly stemming from the Autistic community. I firmly believe in "Nothing About Us, Without Us" and do everything in my power to elevate and amplify the voices of Autistic people when and where I can.

That being said, my son is four. And, like my daughter, I have a vested interest in protecting and defending his rights not only as an Autistic person but as a human being that I love and cherish. I do not (and have never) claimed to speak for him; despite, being non-speaking Sammie is quite capable of communicating for himself and we encourage this communication in any form that it takes.

As I commented on the TPGA page, my blog is a tiny one. I have no idea how to respond to this type of public attention. However, I do believe that if you take some time to read through the rest of my writing, you will find that I am rather consistent in my messaging regarding the role of parents in Autism advocacy. I assure you that I had no idea that my post would be so impactful or so heavily shared, and it was certainly not done so out of a desire for attention. I was simply trying to celebrate a small victory in my community, in the best way that I knew how. Sometimes, the battles matter as much as the war. I do not agree that this was poorly thought out or a 'gun jumping'- rather, it was seizing an opportunity to spread a message of acceptance in the best way I know how to and with the tools at my disposal.

In your post, you also take some pretty strong shots at the entire Boycott Autism Speaks page and group- a page that is run largely by Autistic self advocates who have dedicated their sweat and tears into this movement. I fail to understand what your issue with them is, but can assure you that their efforts have been unceasing. If you believe that there are less passive ways to go about advocacy, I would strongly encourage you to do so. But I would also encourage you to remember that both Malcolm X and Martin Luther King made waves in their movements, using very different messages, mediums and tools. They did not always see eye to eye, but they did both accomplish significant leaps for their community. Advocacy and Activism can take on many forms.

Finally, two points: I am keenly aware that Sam will be an adult one day. I am also keenly aware that I am doing right by him as a parent- I am not perfect by any stretch, but I am raising with love, respect, dignity, and understanding. He is thriving in every sense of the word, and so am I, through his direct influence. We are helping each other to grow and teaching each other wonderful ways of taking in the world. But I have *never* claimed to speak *for* him; not in this post and not ever. In fact, I have been extremely vocal about the fact that Sam speaks for himself. He always has and he always will. I am, at best, a translator- a poor one, oftentimes. It is my sincere hope that I will be able to help him discover tools that are significantly more effective at this than I am. We are currently working on introducing an AAC, and are only engaging in supports that are respectful, consensual and non-harmful.

The final point that I would make is this: I am not American. I am Canadian. We still have a lot of work to do here (and globally, as you pointed out) but thought I would clarify the assumption.

No comments:

Post a Comment