Friday, September 30, 2011

On The Dialogues and Being an Ally

Some of you may have read The Thinking Person's Guide to Autism's Dialogue series. These posts (and the conversations that follow in the comments) are a series of discussions as to the roles of parent advocates and autistic self-advocates in the autism community and in the greater developmental disabilities rights movement.

The series is fascinating and well worth your time to read—although, seriously? Set aside a good chunk of time. And read the comments as well.

I interviewed some people and wrote about it at my Autism Unexpected column. 

While I was reading and thinking for that column, I ended up with pages of notes that I'd written to myself containing my myriad of feelings about the topic. Autism Unexpected isn't the place for my personal thoughts on this issue, but guess what? I have a BLOG! That is totally the place for my personal thoughts. So here you go.


When I first started to look at autism blogs online, back  in 2007 when I started to suspect that Jack was autistic, I ended up at a place called Autism Hub that collected blogs from both parents of children with autism and autistic people themselves. The conversations and posts I read there were full of information and wisdom, but also arguments and conflict, with writers struggling to have their voices heard and understood.

Honestly, having that be my first entry into the autism community was scary for me. I was looking at my 3-year-old child and coming to terms with the fact that his life was going to harder for him than I had hoped it would be. But still, I stayed up at night thinking, not of Jack's new probable diagnosis, but the fracture in the community we were joining and how I should think about autism. Seriously, walking into that conversation without prior knowledge was confusing and uncomfortable.

That said, when I look back, I am extremely grateful that my first exposure to the world of autism came from not just parents, but people with autism themselves. That exposure, that lesson, that knowledge that, hey, it's okay to be autistic, was crucial to my understanding that my autistic son is just as perfect as any other child. That exposure introduced me to the concept of neurodiversity long before I would have heard of it from parents alone.

See? Perfect. Ish.

That exposure helped me realize that I didn't need to grieve the fact that my son is autistic, but rather to understand that he is just on a different path than I'd expected. I don't particularly remember feelings of loss when I became aware that Jack was autistic. For me, it wasn't about mourning the child he was supposed to be, because he was always supposed to be who he is. It was a tough road to get to true acceptance where I am now, but reading adult autistic experiences made that road shorter than it could have been. And that can only be good for both Jack and I.

This is not to say that reading the experiences of parents wasn't meaningful to me. It was and it continues to be. Other parents have very much made my path easier and made my journey infinitely better. I don't look down on parents who grieve loss or feel different than I do. I feel that every person has the right to their own feelings, but I will advocate for what I think is right for my child—and that is teaching him to grow up into a proud autistic adult.

I hope that when he is an adult that people will listen to him and his experiences. And if I expect other people to listen to him, I should put my efforts into getting people to listen to today's autistic self-advocates.

This conversation has me not only thinking about the greater issue here, but also where I fall on that spectrum between parent advocate and self-advocate. I have wondered for a long time if I fall on the autism spectrum. At the very least, I do not consider myself neurotypical. I could go into all the reasons why and why not, but that is probably not interesting to anyone but me. Let's just say that reading books or blogs about autism is very much a "yep, me too" kind of experience.

Or, as my friend Jess says, "Cats don't have dogs."

Regardless, as a diagnosis or self-diagnosis is not in my future, I do not claim a space on the self-advocate bench.

As a parent advocate, the conversation taking place has been a little uncomfortable for me. It is all so complicated and made up of individual voices and, honestly, my head feels a little fuzzy sometimes when I'm trying to digest it all.

The crux of the conflict here is between autistic advocates, who say that this is their movement, and parent advocates, who have a hard time hearing that. Just as women need to lead their movement and African-Americans need to lead their movement, autistics need to lead their movement.

But then there are some parents who want to lead, who have spent the whole of their children's lives trying to help them, and living for them and doing everything for their autistic children that they can possibly do—and, quite honestly, feeling dismissed by most of society while they do it.

But these parents are now hearing that what society does to autism parents? Well, we're kind of doing it to adult autistics. We listen to what they say, but we don't hear it. We nod when they talk, but then think we know what is better for them. We work so hard for our kids and then when we are told that it's not really appropriate for us to lead the movement, but rather to be an ally, it hurts.

I feel that most parent advocates want to hear autistic advocate voices, but that it can be hard to let someone else take the microphone when we feel so passionately about helping our children. It can be hard to see that maybe someone else might be better at pushing the disability rights movement forward than us, people without disabilities.

This doesn't mean that we stop advocating. Absolutely not. But we need to accept that the true stakeholders in the movement are not the parents, but the people with disabilities themselves. (This also doesn't discount the fact that there are autism parent issues, and we're definitely the stakeholders there.)

I know that when I get comments here, or other places that I write, from autistic individuals, they carry a tremendous amount of weight with me. The give me hope and understanding. If they feel respected by my voice, hopefully that means that Jack would also feel respected by my voice. I also see that many of these adult autistics are fighting battles so that my son won't have to when he is their age. How can we ignore these folks? How can we not use our platforms to give them platforms?

As goodfountain commented on one of the Dialogues posts: "It's interesting that I read language like 'disabled adults should have a voice'—to me it should be that disabled adults ARE the voice."

The Dialogues have made me look at my own behavior, what I've written about, who I've asked for quotes when I interview people, and how I perceive my own role in this advocacy movement. I'm sure I will make all kinds of missteps (because I'm kind of a jerkapotamus) as I try to proceed as a parent advocate/ally, but I promise to try.

One of the best comments I ever got on a post was one that said that I sounded like "a natural born ally." Do I still want to fight in the autism rights movement? Hell, yes I do. But if I can't be in the army, I can still be a kick-ass ally.


If you are interested in this, please do check out my story on Autism Unexpected, but more importantly, read the Dialogues and the many autistic and parent voices speaking there. I think this issue is crucial to our community and will only become more important.

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