The Self-Advocate/Parent Dialogues, Day One: Zoe

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 is going first.

-The Editors


Dear Robert,

There is a saying amongst developmentally disabled activists. It goes like this: “Some parents just want disabled children to speak and disabled adults to shut up.”

I have been agonizing over my decision to start my first letter with this phrase. I don’t want to make you, or the other parents reading this, feel attacked right away. I don’t want to put anyone on the defensive. But ultimately, I still feel like I have to begin with this. Because when I get angry about parent advocates ignoring disabled perspectives, it’s about so much more than any particular blog post. It’s about the context in which I am trying to make a difference as a disabled person.

Some parents just want disabled children to speak and disabled adults to shut up. We don’t say this because we hate parent advocates; we say it because we’re frustrated after being ignored for so long. The people who are considered “experts” on developmental disability right now are all non-disabled. Just open a newspaper to any story about issues of disability, and see who the reporter sought out for a quote. Overwhelmingly, journalists ask non-disabled parents or doctors to contribute their expertise to such stories.

Disabled people have seen over and over that there is so much sympathy in this culture for parents of disabled children that most people will seemingly forgive them for anything. For example, when parents murder their disabled children, the media seems to rush to defend their actions, dwelling on how the difficulty of raising a disabled child without the proper support can cause otherwise-loving parents to “snap.” Journalists seek out other parents of disabled children to give sympathetic quotes about the murderer. When disabled advocates express disappointment at the low value that such media coverage places on our lives, we are accused of lacking empathy for the murderer.

Currently, I’m feeling frustrated about overwhelmingly supportive comments about the parents of the recently-rescued Joshua Robb. Said parents lost custody of Joshua after tying him to a post in their yard. Non-disabled commenters on the subject mostly think it’s an outrage that the parents have lost custody. Maybe tying up a normal child would be abuse, they say, but not a “flight risk” like Joshua. Disabled commenters think the real outrage is tying any child to a post. Some have their own experiences with restraint and can speak first-hand about its negative impact.
Some have been labeled “flight risks” themselves when they were trying to escape abusive environments. It’s vitally important that these people be included in the discussion about “wandering” that has been going on for months now. But mostly, their voices are going unheard.

You may feel offended at this point. In case there is any doubt, let me assure you that I am not bringing up these cases in order to compare you to these murderous and abusive parents. I am bringing this up in order to point out to you how much space you have, as a non-disabled parent of a disabled child in this society, to express your opinions. I’m trying to point out that you have real privilege, that this culture wants to hear your voice but does not want to hear mine. And I’m bringing this up in order to highlight the negative impact that this power imbalance can have.

Some parents just want disabled children to speak and disabled adults to shut up. We say this because we’re tired of being dismissed. An act at which some non-disabled parent advocates excel (one could even call it a “splinter skill”) is coming up with reasons to disregard what disabled people have to say about disability. We’re too angry (“You catch more flies with honey than with vinegar”). We disagree with them too much of the time. We’re not properly grateful that they’ve taken a stance as our allies (“I’m putting myself out here for disability rights and I haven’t heard a single thank-you from disabled people”). We’re too idealistic, or else we’re too “small-picture.” We’re too disabled (“You’re autistic, so your perspective is distorted by your black-and-white thinking and lack of empathy and I don’t have to listen to you”). Or we’re not disabled enough (“You’re lucky to be able to write a blog post, but my child is more severely affected so I don’t have to listen to you”).

In the wake of the internet blow-up that lead to this dialogue, I saw a lot of comments from parent advocates that really disturbed me. A few people said how “disillusioned” they were with the idea of self-advocacy after observing disabled and non-disabled adults disagreeing. One parent shared the story of how their “eyes were opened” to the failings of self-advocacy after a disabled adult disagreed with them in a meeting. What I want to know is — why do these disagreements invalidate self-advocacy completely, but say nothing about the state of parent advocacy? Why do so many non-disabled parents expect either complete silence, or automatic agreement from disabled adults, and why are they shocked when they find that we have our own opinions?

I feel like this attitude is summed up well in a tag that you often append to your blog posts: “shepherds of the broken,” which appears to refer to you and other parent advocates. Here’s the thing: shepherds decide where the flock is going. Sheep don’t. If I have my own ideas about where the disability rights movement is headed, if I don’t like being called “broken,” if I want disabled voices to be the center of discussions about disability, are my opinions valid?

Well, no, not if you view me as a sheep in your flock. If we are considered sheep to be led by neurotypical shepherds, disabled people can never take a leadership role in the movement which advocates for our rights.

Some parents just want disabled children to speak and disabled adults to shut up.

For the record, I am aware that parent advocates are Not All Like That. I have had great discussions with parents who are Not Like That. I don’t think of my own parents as being Like That at all. And though you, Robert, have been Like That to me in the past, I don’t think you’re Like That all the time, or else you would not have agreed to hear what I have to say on this issue.

But just saying you’re Not Like That is not enough. If you’re a non-disabled parent reading this and you think I’m being too harsh, please take a moment to consider whether you may have been Like That at some point. You probably have, at least for a moment. It’s not because you’re a bad person – it’s because you live in a society that teaches you that the voices of neurotypical folks are more important than the voices of disabled people. It’s because you’ve been given privilege, and that affects the way you think.

If you want to be Not Like That, if you want to be an ally, you have to be conscious of your privilege and recognize how it shapes your thinking. You have to listen to what disabled people have to say about disability – even if it makes you uncomfortable, even if at first you think it’s unfair. You have to recognize that you don’t represent us – we represent ourselves. And if the disability rights movement is going to model the equality that we all hope to see in the wider world, you won’t always be leading us – sometimes we will be leading you.

I would love to have you as my ally, but I don’t want you as my shepherd.




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