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.