The TPGA Dialogues Discussed, Part 2

I replied again to the TPGA Dialogues discussion continuing at Julia Roberts's Support for Special Needs, because there's still some not getting it going on. While it is against my non-confrontational nature to get in the middle of such things, this is not about me -- this is about doing the right thing even when it's not easy.

While I don't doubt that Julia will post my comment, those comments are moderated and it might take a bit for this to appear.

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Apologies for the delay in replying -- beyond busy these past ten days though I've been thinking about this the whole time, because it's so damn important.

I am all for civil disagreement. I crave it. Anything else is an aversive and makes me wince.

But I also recognize that it is unreasonable to expect people who are oppressed to be civil when discussing that oppression with the people who are oppressing them. We parents who do not ourselves have/share our kids' disabilities know too well how pissed we get when folks treat us and our kids badly, especially when they do so from behind a shield of good intentions. Do we really want to behave that same way towards people who know what it's like to be our kids, and who (in the case of every last adult with autism who wrote for the Dialogues) work so hard to make life better for our kids/people with disabilities?

If we were parenting children of a different sexual orientation or race, I'm guessing very few of us would dismiss the feelings or rights of representatives from our children's community, or get publicly defensive if we were called out for writing something offensive to them if we did so out of ignorance rather than malice. We would listen and learn rather than protest because those communities have established, recognized advocacy movements, and have changed the way most of us think -- to the point where folks who publicly oppose racial equality or LGBT rights look like total assholes.

The rights matters discussed in the Dialogues are no different, but the discussion is younger, and while the Disability Rights movement is long-standing, the Autistic Self-Advocacy movement is just starting. Do we really want to be the opposing assholes cited in the history books? If we aren't ready for, don't have the energy to, aren't able to help, or aren't able to tolerate the unpleasantness that comes with working towards and effecting real social change, can't we just listen without making it about us -- or get out of the way?

This is hard for me to write. I like everyone who wrote for the Dialogues. I always want everyone to get along. And, when I find out people are upset my heart goes out to them -- as it did to Rob Rummel-Hudson when there were real-life repercussions from participating in the Dialogues, and as it did to so many of the participating self-advocates who felt that Robert and other parents continued to justify not listening to and dismissing them.

I am not saying all self-advocates are paragons of righteousness and perfection, or are incapable of making mistakes, or that we non-disabled parents need to listen to every last word they say and can never argue, never have the right to stand up for ourselves. That would be absurd, as it would be to expect self-advocates to view us non-disabled parents the same way. But when the discussions are about what self-advocates want, and what they need, and what they deserve? If we want to be the kind of parents and allies our kids want, need, and deserve, then we need to listen.

Again, I recommend people read the second week of the Dialogues, which would be the top five posts at the following URL, i.e., Day Six through Day Ten: http://thinkingautismguide.blogspot.com/search/label/dialogue.

I also recommend reading Jean Winegardner's excellent essay on the Dialogues, Who Should Lead the Autism Rights Movement:
http://communities.washingtontimes.com/neighborhood/autism-unexpected/2011/sep/30/who-should-lead-autism-rights-movement/

Update: additional recommended posts from advocates:

• Neurodivergent K: For the Billionth Time, I DON'T HATE PARENTS
• Eater of Trees: Allies Are Terrible Forever
• Moonlit Lily: A Comment That Became a Post

Parents and Self-Advocates: Be All(ies) That You Can Be

When folks I like and whose brains I respect go after each other online, it's like coming home to find my favorite roommate smacking around the person I'm dating. So you can imagine how dismayed I was to to see Ari Ne'eman and Robert Rummel-Hudson at public loggerheads. Especially Robert and Ari. Why?

Two weeks ago, I was at the BlogHer conference in San Diego, speaking on a special needs miniconference panel alongside Robert. His talk was clear-eyed and inspiring -- he pushed everyone in the room to acknowledge that disability rights are civil rights:

I believe the fight for disability rights, particularly in the hearts and souls of our typical fellow citizens, will constitute the next great civil rights movement in this country. And I believe that, with all my heart.

While I was ruminating on Robert's call to action, neurodiversity journalist and author Steve Silberman called to let me know that Ari Ne'eman's keynote speech at Syracuse University's Neurodiversity Symposium (an event about which I'd been whining, since I wanted to go but couldn't be in California and New York at the same time) was truly wonderful, needed to be shared more widely, and did I want a copy of his audio*? Oh yes, I did.

Ari's talk is indeed a must-listen; he spoke eloquently and forcefully about the neurodiversity/autistic self-advocacy movement, stating that:

"...it's essential that we recognize that neurodiversity is an outgrowth of disability rights, and that disability rights is an outgrowth of the civil rights movement."

To be clear: Ari and Robert, on the same day, were both publicly championing disability rights as civil rights, were spreading the word that the "concerns" of the disability community are actually human rights, were demanding not just the attention but the respect of every last person who could hear and spread their messages.

These are men who are primed to be allies. These are men who need to talk to each other.

Because, honestly, there are enough jerks outside our community, holding their paintball guns of self-righteousness aloft, shaking them and yelling at us to shut up about disability rights, getting pissed off when we shame them for verbally disrespecting us or our children, complaining about "all the money" neurodiverse and disabled kids and adults suck from the system. Turning those people around, that should be our battle.

And yes, there are people from our community who should be fighting alongside us, who should be cheering Robert and Ari along, who really, really are not. And while that is a shame and I have no problem calling out people like Jenny McCarthy whose specific actions derail our efforts, my hope is that through firm, vocal, and positive role modeling, such people may come to see the error of their mindsets and stand alongside us.

But then there are -- again -- people like Robert and Ari who are already on parallel paths, with the same or similar goals. Oftentimes what separates them is not ill will or disrespect, it's lack of each other's contexts. As I said at the BlogHer miniconference about my perspective as a parent:

Most of us have not done this before; as parents, most of us came from outside the special needs community. We have to learn everything from scratch. And after eight years of blogging about Leo and his autism, I came to realize I have learned so much from all of you, from Leo, from the professionals, from the adults who have autism -- and I so wish I had known everything I know now at the time Leo was first diagnosed. How amazing would it have been to transplant my current brain into my body in 2003?

We need to recognize the difference between genuine ignorance versus willful ignorance -- you can usually do something about the former, with enough patience and perseverance. When I started out writing about my Leo and his autism in 2003, I had very little context about people with autism; I was genuinely ignorant. I wasn't evil or malicious; I was underinformed -- I just hadn't had any exposure to Autistic self-advocates.

Thankfully the self-advocates I correspond with most frequently -- including Carol and Corina and Lindsey and Rachel and Landon and Val -- are mostly patient with me when I stumble in writing about or otherwise characterizing autism and disability issues. They usually treat me the same way I try to treat my kids -- they take a positive approach, and tell me what they want to see, or ask me if my omissions of perspective or content were intentional -- rather than lambasting me for what I may not yet know or have considered. And they mostly listen to my perspectives and advice, too. (As much as anyone does -- I am tangent-prone.)

I'm not saying everyone in our community has to agree all the time; that would be dull. But I am asking us to treat potential allies with respect, and have some patience with each other -- because we need each other if we're going to catapult Ari's and Robert's civil rights agendas into the mainstream where they belong. As Robert said at BlogHer:

"... for that to happen, all of our little communities of need will have to become a unified group. We must embrace the idea that the rising tide really can lift all our boats. More to the point, the retreating tide can and very probably will leave us all stranded in the mud."

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*Excerpts from Ari's keynote will be posted on the Thinking Person's Guide to Autism tomorrow; you can view the webcast at neurodiversitysymposium.wordpress.com/210-2/. Thanks again to Mr. Silberman for his exuberant generosity.