The Self-Advocate/Parent Dialogues, Day Two: 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?

Because it needs to happen. Because being a parent of a disabled child is not the same experience as having a disability, and we need to figure out how we can have productive conversations about that
disconnect — especially when it affects our ability to work towards common goals.

Building constructive conversations and creating real social change isn’t a garden party — it is hard work. It requires steely listening, forcing ourselves to bench purely defensive reactions, and honestly trying to understand unfamiliar perspectives and direct criticism. It might require walking away from the screen and giving yourself time to process, and that’s fine. You don’t have to participate in these dialogues to learn from them.

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

Zoe went first.  Here is Robert Rummel-Hudson’s response.

-The Editors



First of all, I just want to express my appreciation to Shannon [one of TPGA’s editors] for putting this together. I hope we can have a real dialogue that doesn’t degenerate into name-calling and wall-building. I think we can.

Zoe, I notice and respect the fact that while you acknowledge that some of your points might be taken as offensive, you make them just the same. How often does anyone intend to be offensive, particularly in a discussion like this? There are exceptions, of course — I’ve certainly received my share of intentionally offensive emails and comments over this — but in general, I think we’re coming from wildly different perspectives, and most of the offense that results is unintentional. You’ve done me the service of speaking your mind, and I trust that the same courtesy will be extended to me.

In the three and a half years since my book was published, I have spoken at over two dozen events, most of them conferences related to disability and alternative augmentative communication. I’ve spoken at small gatherings, and to a room of almost three thousand speech language pathologists.  Schuyler and I have visited at length with AAC users, both children and adults, and with the researchers and the developers and the therapists who have worked tirelessly to help them reach a place where they have the tools and the platform to speak for themselves and truly be heard.

And I’ve met parents. I’ve met hundreds of them. I’ve met parents who are strong, and I’ve met parents who are overwhelmed. I’ve met parents who assist their kids as they move to a life of independent living, but I’ve met many many more who are preparing for their children’s adult lives, lives that will be spent in their care, parents who wonder every day who is going to take care of their grown sons and daughters when they die. And I’ve met parents who have worked tirelessly to give their children voices, to literally give them the tools for self-expression that they lack.

I can say with a great deal of certainty that in my experience, no matter how many times you repeat it, there are in fact very few parents who want disabled adults to shut up. I certainly see enough factions of general society who do not want to hear from or about persons with disabilities. But I consider myself part of an army of parents who have dedicated ourselves to making the exact opposite come true.

Now, having said that (and meant it rather vigorously), there is a real question I and other parents need to face. Are we truly listening to what some of those adults with disabilities are saying? And the answer is clearly that we have a great need to listen much more clearly. We need to broaden our perspectives when we think and write about the issues that affect our children and the adults we want them to grow into. It’s something I have endeavored to do in my own writing, and I hope the results can be seen in the work I’ve done since the original offending article. I proceed as best as I can, and I do so with the belief that just as you deserve to be heard by me, so do I, by you. Just because I don’t have a disability doesn’t that what I have to say isn’t relevant, either to the rest of the world or to you.

The thing that has bothered me the most about the reaction to that article and the “discussion” that followed is just how unproductive it has been. Zoe, I would have loved to have heard from you when it first went up. I would have loved to correspond with you and had an opportunity to rewrite it, to expand it, to make it more inclusive. I would have loved for you to have delayed your judgment long enough to read more of what I had written and see how hard I’ve advocated for AAC issues and for helping kids like Schuyler develop the tools they need to live independently and self-advocate effectively.

Instead, I made a good Boogeyman for your cause, a scapegoat for all the mistakes of the parent advocate community. I would have made a better ally. And if we’d been speaking to each other rather than at each other’s blogs, I believe we could have been.

There’s something that I think needs to be made clear about my own perspective, a point that frankly made me hesitant to have this dialogue at all, at least on this site. It’s irrelevant to some of the points being made here, but appropriate to many others. And that is simply this: my daughter is not autistic.  She has a developmental disability, she has a neurological condition resulting from a brain malformation called polymicrogyria. She is developmentally delayed and nonverbal, but she is not autistic.

Why is that relevant? It became so once this issue exploded. It became relevant when a noted self-advocate said that Schuyler was a part of her disability community but I was not. That sentiment was echoed by others, and here’s the thing. Those others were people with a variety of disabilities and disorders, including autism, bipolar disorder, and even diabetes. And not one of them walks in Schuyler’s world, not in a significant way. Her issues aren’t theirs. There is overlap, but that overlap exists in a lot of people, including me. Zoe, you say, “I don’t feel like comparing my abilities with someone else’s is an appropriate response.” But dismissing those very real differences isn’t any better. (It’s also worth pointing out that within your own autism community, there is a very broad range of manifestation and a great many persons who are unable to effectively self-advocate.)

So we’re in this place now where parent advocates of kids with any disability, not just autism, are told “You’re not one of us, you can’t understand our lives.” And that exclusion might be appropriate sometimes, but not all the time, and I don’t think all that often. It’s not community, it’s tribalism. And it’s being wielded like a hammer, inappropriately at times.

And I understand why, and I understand that no, the crux of the issues we’re writing about isn’t parents, it’s the person with the disability. But there are gray areas here, like everything else in life.  Dismissing us because we are parent advocates is wrong, and it’s not doing anything at all to make anyone’s lives any better. And when we make mistakes, we are simultaneously kicked and bemoaned at for the lack of dialogue or even listening. What that attitude towards us says is not “You’re making mistakes, you need to broaden your perspective, you need to listen to people who can grow your advocacy in a productive way.” It says “Go away, don’t engage this community, this tribe, of self-advocates. There’s no dialogue here, only posturing and lecturing and disregard.”

So we have a choice: Retreat into our tribes, or find a way to diminish our assumptions about each other. And that’s hard, for everyone. When we’re offended, can we ask ourselves if the offense is intentional and worthy of a bitter response? And if it’s not, if our offense comes from a place of ignorance, or from lack of perspective, or from things that we assume to be true without digging further, can we look past our emotions and our offense to find commonalities?

Zoe, you and others talk about how parents of kids with disabilities come from a place of privilege, and in some ways you are exactly right. But when we talk about the ways in which the media and perhaps society go easy on parents who become overwhelmed and commit atrocities against their disabled kids, we shouldn’t forget the failure of our societal machinery to provide support for those families in the first place, before they melt down. We as a community have to face a society that all too often rewards our “privilege” with reductions in early intervention programs for children as well as services for adults with disabilities, a society that looks to special education as a place to cut budgets so the football team can still afford nice buses to away games. Simply put, we need to acknowledge the role that perspective plays in deciding who is truly privileged.

At the same time, while we’re talking about positions of privilege and the ways in which that can blind us to other perspectives, I think it’s worth pointing something else out. And I suspect this will offend, because it did once before when I expressed it clumsily. And I’m sorry for that. I truly am.  I’m equally sorry now because I’m not sure I’m about to do it any better this time.

But like it or not, Zoe, being in a position to live independently, to self-advocate, to even have this conversation with me today, this places you and other self-advocates in a very real place of privilege. This is hardly your fault, any more than the place of privilege of parent advocates or white people or Christians or first-world citizens is theirs. But if the advocacy of self advocates is going to ignore those persons with disabilities that do not allow for self-advocacy or independent living, and if you are going to minimize the contributions and very real work done by parents whose work on behalf of their kids focuses not on giving them an environment where they feel comfortable being who they are without offense from others, but rather on things like keeping them alive, if you insist on representing persons with disabilities for whom your own disability gives you very little perspective, then your own privilege is getting in your way. I’m sorry, and I know I’m going to get roasted for saying that, but it’s true. A lot of parents will never have the opportunity to see their kids truly advocate for themselves, and those parents deserve much better treatment and support than they are getting from the self-advocate community.

I understand your objection to my “shepherd” metaphor, but shepherds do more than lead their flocks. They also protect them. They protect, and they guide them to their destination, hopefully without losing any of them to the wolves. Those wolves can be a lot of things. The wolves can be actual disabilities, or they can come in the form of bad therapists or dismissive doctors. They can be bullies in schools or school boards or uninformed, uncaring voters. There are wolves we don’t even know about yet.

There are parents out there, many of them, whose days are spent trying to find ways to improve the quality of life for their children. My own daughter has grown up with the specter of possibly lethal seizures hanging over her head. I’ve made friends with other parents of kids with polymicrogyria over the years, and more than once I’ve found myself writing to those parents expressing my condolences at the loss of their kids. And while it’s possible that Schuyler and kids like her will be able to live independently one day, that is a possibility that is difficult to see. What is the place in your vision of self-advocacy for those kids when they grow up?

Indeed, how does your vision of self-advocacy work for those who disabilities leave them totally dependent, those who require supervision and assistance most or all of the time? What is the role of that child’s parent as advocate? And are the perspectives of those parents not important to the disability community? Those children are as important as anyone else. If we don’t stand up for them, and they can’t do it themselves, then what?

Self-advocacy has to extend beyond (and again, forgive the phrase, which I know is problematic) high-functioning persons with autism. It has to extend to the voiceless. It has to extend to those whose lives depend on the advocacy that their parents strive for. Will we get it right all the time?  Even most of the time? Probably not. And will our perspective color our advocacy? Absolutely, and often to the detriment of that work.

But it will be equally detrimental when anyone responds with broad generalizations about us and how we want you to shut up, or how we want to deny you the right to take leadership in communities of adults with disabilities (a charge that frankly doesn’t make a bit of sense to me). And if you take advantage of your own kind of privilege by claiming the right to say whatever you want without consequence while at the same time denying our right to speak our minds because we aren’t disabled?  If you use that position to silence or disregard the advocacy of parents who try to accurately speak for their kids when their kids are unable to do so? Everyone loses. Everyone.

I am learning. We all are. But painting parents with broad strokes and dismissing us as ableist and privileged encourages tribes, not community. As does excluding persons with disabilities that you understand just as poorly as we do.

Again, I appreciate the opportunity to speak here.  Thank you.