The Self-Advocate/Parent Dialogues, Day Five: Robert Rummel-Hudson

We’re hosting a dialogue series this week, between parent Robert Rummel-Hudson, author of Schuyler’s Monster and blogger at Fighting Monsters With Rubber Swords; and self-advocates Zoe, blogger at Illusion of Competence, and Ari Ne’eman, President and co-founder of The Autistic Self-Advocacy Network. Why? We want to encourage constructive conversations about disability.

Zoe and Rob disconnected spectacularly last month. If you don’t know the backstory, see Rob’s post, and Zoe’s reaction. Neither is satisfied with the way that scenario played out; they are using this space to attempt a do-over. 

Robert Rummel-Hudson has the floor again today.

All the participants — writers and commenters — have our gratitude. Not every exchange has led to greater understanding, but many did, and that could not have happened without you.

-The Editors


The world is watching us.

The world is watching as many parent-advocates and disability self-advocates fail to hear each other, fail to validate each other’s very real work and very powerful experiences, fail to recognize the life pieces we share, fail to build on those commonalities.

The world is watching as some of our communities become tribes, as healthy debate on issues like vaccines, cures, inclusion, cochlear implants, privilege, and language turn into fights.  The world is watching as we feed on each other.

The world is watching, but the world isn’t seeing our commonalities. And much of the world is more than happy to deny us a place at the table of human dignity. To the world, we probably look happy enough fighting over the scraps from that table. We’re certainly busy doing so.

Building communities is hard work. It’s hard because our commonalities are deteriorated by the things that divide us, certainly, but they are also eroded by the thing that we all really do have in common: our humanity. Our human failures, our egos, our fear of the unknown, our inability to view the world from another perspective. We’re not characters in a movie. We don’t represent specific archetypes that never change or grow. Like everyone else, parent-advocates and disability self-advocates are evolving. But evolution is slow, it’s uneven and probably not much fun to watch.

For me, that evolutionary process began in earnest in 2003, when Schuyler was diagnosed, and it has continued in fits and starts ever since. I’m hopeful that in the past few weeks, my eyes have been opened by my interactions with people like Zoe and Ari and others like ThAutcast’s Landon Bryce.  When Mr. Bryce suggested earlier in the week that I’m clueless about autism, that statement was in fact one hundred percent accurate. I will own up to that without hesitation. And Mr. Bryce wasn’t being dismissive; indeed, he went on to put together an essay that spoke to the heart of my own issues.  It was a much appreciated gesture. If I want to work as an advocate for a larger social change, I need to do so with a broader understanding than just that of a parent-advocate.

Parent-advocates are well served by broadening our understanding, because Zoe is right. We do receive a disproportionate share of “authority” on disability issues, as assigned by the media and society at large. I don’t think it’s always inappropriate, to be honest, but the fact remains that our voices are being heard in a great number of places where a self-advocate’s voice would better serve the cause. And not just for their life experiences, but for their passions and their opinions and most of all their right and absolute ability to guide policy-making.

It seems to me that there are at least two ways to affect positive change in this imbalance. The first seems obvious, albeit complicated in its implementation. Persons with disabilities, particularly adults, deserve a much higher profile and a much greater degree of authority when disability issues are being discussed and when policy is being made. That goes beyond the autism community, too. It is imperative that persons with communication obstacles be heard, and on their own terms.

The second approach to improving the quality of disability dialogue can happen immediately.  When parents are called upon to advocate, when we are put in front of a microphone or when our books are published, when we find ourselves representing this thing that we hopefully refer to as a “disability community,” we can quite simply do so in a more inclusive and informed way. And when we have the opportunity to do so, we can defer to self-advocating voices more appropriate to the discussion.

One thing is certain, in a world where so few things are. Parent-advocates will continue to advocate, imperfectly or otherwise. You know that. Parent-advocates do not find it easy to back down, and that’s a trait that has largely served us and our kids very well. We just need to advocate in a smarter and more inclusive way, and we need to better understand the world of adults with disabilities. Not just because it’s fair, and not just because it makes us better advocates, but also because it is going to make us better parents.

This week, the world is watching this dialogue. I honestly don’t know if that world sees the end of hope for a larger and more effective advocacy movement, or the new possibilities that might come from further and better dialogue. I have serious doubts, but I also have hope. And as a rule, I usually put my money on hope.