TPGA on Special Needs Talk Radio

Yesterday the entire TPGA editorial team -- me, Jen Myers, Liz Ditz, Emily Willingham, and Carol Greenburg -- was interviewed by Elise Ronan on Special Needs Talk Radio. It made me incredibly proud to be part of such a smart team of ass-kicking women.

Listen to internet radio with SpecialNeedsTalkRadio on Blog Talk Radio

We talked about the forthcoming TPGA book, why it is so important for both our team and our project to represent an autism cross-section -- parents, Autistics, and professionals; what we hope to accomplish; the fact that the only investment in this all-volunteer project is our own blood, sweat, and tears (and, OK, occasionally the blood of non-critical-thinkers); and that we created this project to be a one-stop resource for families and individuals new to autism, to help them fast-forward pass the negativity and misinformation from organizations that may appear legitimate to new autism parents and the newly-diagnosed. And oh, a lot more.

A correction: rather horrifyingly, and in my nervousness, I bungled the name of ASAN -- the Autistic Self-Advocacy Network, www.autisticadvocacy.org -- and want the org referred to made absolutely clear. I cited ASAN in highlighting their new project for helping people with autism navigate college -- appropriately enough called www.NavigatingCollege.org. Please check out the new site and broadcast it widely!

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.

---

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

The TPGA Dialogues, Discussed

My friend Julia over at Support for Special Needs wrote a post today called The Silo Effect, which referred to TPGA's Dialogues in the following passage:

"Recently there were some discussions between parent advocates and self advocates in hopes that they might create understanding, a bridge; something that might start the process of working together better as one larger community. In my opinion, that didn’t happen, unfortunately."

I wrote a long comment in response, but as the site moderates its comments, I am running out the door, and I've been meaning to write about The Dialogues anyhow, here's what I said:

The discussions referred to are the Self-Advocate/Parent Dialogues at Thinking Person's Guide to Autism, which you can find at http://thinkingautismguide.blogspot.com/search/label/dialogue. I'd recommend people read through the entire series, as the second week brought more synergy and less dissonance than the first.

It has certainly been informative to read how differently readers and participants reacted -- some defensively negative, others thankful and positive; others still processing, pensively. And much good has already come out of the Dialogues, such as actions already being taken in response to self-advocate Zoe's call for a PFLAG-like self-adovocate/parents/allies organization.

I am certainly grateful to everyone who participated in the Dialogues, even if only as a readers. But the Dialogues weren't meant to be a solution, they were meant to be a start. They were absolutely complicated and challenging -- that is what the early stages of social justice and civil rights movements look like.

At the root of the Dialogues was one of the most important questions any person can ask themselves -- if someone asks me to listen to them and take their identity and cause seriously, do I pay attention? Even if what they're saying makes me reassess my own identity and cause, down to the core?

Being a parent of a child with special needs can be a really damn hard, isolating, marathon, sometimes heartbreaking role -- much of those difficulties externally imposed by the educational, medical, social, and legal systems that let us and our children down. It is understandable to be taken aback when someone tells us that we don't have the right to speak for our children, if we've spent so much time as their only ally, against all odds and bureaucracy and prejudice.

What parents need to consider is that  self-advocates are our possible future children. That while our child may not share the same disability -- may not even ever be able to self-advocate -- that is a separate matter from that self-advocate's right to not only have a say but be considered an authority when it comes to disability rights.

So, yes, we should work together, and I appreciate Julia's call for listening, and especially her call for apologizing when we make mistakes -- I'm a mistake-making flag-waver, myself -- But getting to the place where we can do that is going to be hard work, and we've only just started. We need to build cross-communities respect, first.

We TPGA editors are planning to host another Dialogues series, in the spring. Stay tuned.

Summer Launch

We're doing it. We're taking Leo on his grandparents' boat -- the boat they built with a designated berth for each grandchild (though at the time there were just four grandsprogs as opposed to the current sextet) -- and on which he has been on exactly one time, for a quick Lake Washington/Lake Union jaunt. We're prepping him with yet another social story:

His grandparents are being amazing, they are open to Leo staying on the boat for as many nights as he wants to - or no nights at all. Or taking one of the little boats and going ashore for a break. Or going ashore and taking a taxi straight home, if he starts melting. Ideally, though, our weekend will culminate with the extended Rosenberg family gawking at Fourth of July Fireworks from the middle of Lake Union. We are front-loaded with our iPad and tons of new videos and apps and music. We are poised for success.

(Plus his grandparents also do an expert job of stocking their wet bar.)

Hopefully we can celebrate afterwards with our own [Leelo's] on a Boat video. Will keep you updated.

---

In other matters:

I have a post up on BlogHer today, about Leo's extended but successful journey to toileting independence. We now live in a pullup-free household! So proud of our boy.

We are having phenomenal success at The Thinking Person's Guide to Autism. We are drowning in riches. We are achieving our goals, in terms of the spectrum (*rimshot*) of topics we'll be covering, showcasing perspectives from parents and professionals and educators and autistics/people with autism, throwing out strong statements about science and pseudoscience, and being a genuinely useful resource. We have extremely talented professionals donating their services for photography and book design. The commenting has been lively as well. We are so grateful to everyone who is helping TPGA kick ass!

(If you want to be one of the writers who helps TPGA kick ass, we've extended the deadline for submissions for the book to July 16, as we've been truly deluged with excellent writing. But we'll continue publishing essays online if that timeframe is too tight but you still want to participate.)

Other than that, our summer is the usual joyous swirl. Leo is in summer school for his last session at Loma Marina before transferring to Autism Wunderskool in the fall. He also came to one of our local concerts in the park for first time ever, and not only tolerated it but enjoyed it, I think. He was there for three hours and never complained. (Mali certainly didn't complain -- the band played doo-wop and funk, including her very favorite: Earth Wind & Fire! She even corrected me on their playlist -- I thought they were playing Boogie Wonderland but she said, rightly, that it was Let's Groove.)

Iz went to Green Day camp last week, and totally kicked butt with her singing and learning to play the drums (she and her friend Merlin didn't really consider Green Day's lack of keyboards when they signed up). They had a concert on the last day, and played four songs. I was impressed by how unfazed Iz and Merlin were by occasional bonks and how seamlessly they picked back up and corrected themselves without freaking, until Merlin's mom Ep pointed out that our kids have been taking piano from a Ukrainian for several years now, during which time their instructor has bullet-proofed their performance attitudes. Which also explains a lot about Iz's confidence and recovery skills when she played Mary in the Secret Garden (she said she blew it a couple of times, but no one in the audience could tell, including me).

Mali went to local rec center "let's do crafts and run around at the park!" camp with her friend Lucy,  which she considered every bit as worthy as Iz's band camp. Lucy came home with us several times by my request, which is just part of enjoying having the house where friends and family feel comfortable coming over spontaneously, playing, swimming, and just hanging out. Which reminds me, locals: Are you going to the BlogHer10 pre-conference meetup on July 24? I'm going. Hope to see you there.

Also starting to get excited about BlogHer10 itself. About moderating the Autism Panel with luminaries Pamela Merritt, who is SharkFu of Angry Black Bitch, Jean Winegardner of Stimeyland, and Sharon DaVanport of the Autism Women's Network. About seeing so many amazing people. About going to get me some damn Ghanaian food. And about having a book reading with Jen Myers & Jen Silverman for My Baby Rides the Short Bus on Saturday, August 7, at 7 PM at Bluestockings bookstore on the Lower East Side of Manhattan (please come!).

So, a mellow summer. Yeah! How is your summer shaping up?