I've been reading people's blog posts about the TPGA Dialogues, and I think that some people think that I think something that I don't think. (How's that for Theory of Mind?) I've seen a couple different people summarize the original disagreement that Robert and I had by saying: "Robert wrote a post about how the R-word can hurt parents of special needs children, and then Zoe responded saying that non-disabled people have no right to be offended by the R-word."
I'd just like to clear this up because that's really not something that I think at all! I think the R-word is offensive, and that quality can/should/must be recognized by everyone, not just people with disabilities. I would never ask anyone not to be offended by the R-word. Please, get offended! Do it loudly! Make sure everyone knows you're offended! We need as many people as possible speaking out about this.
Here's the thing, though: I don't think that it's okay to talk about the offensiveness of the R-word without talking about how it hurts disabled people. That was my criticism of Robert's post: he wrote a lengthy essay against the use of the R-word, but the only reason he gave was that non-disabled relatives of disabled people could be hurt by hearing it. And I don't think that was appropriate, just like I don't think it's appropriate to talk about sexism and never mention the effect it has on women, or talk about racism and never mention the effect it has on people of color, or talk about homophobia and never mention the effect it has on queer folks. When you talk about prejudice, you can't ignore the people who experience it first-hand. That's all.
People have also said that I wanted Robert to "write from the perspective of a developmentally disabled person" something which he, as a neurotypical person, clearly can't do. Or they say that I expected him not to write from his own perspective. This isn't really true either. I appreciate the fact that parents/siblings/caretakers write about their experiences - they are important experiences to share. But they are not the only experiences of disability that it is possible to have. What I would have loved to see from Robert would be an acknowledgement of other people's experiences relating to the R-word, especially the people who the word refers to. In the entire post, he didn't mention that disabled people are affected by the use of the R-word at all, an oversight for which he later apologized. I was upset about this oversight, not because he was writing from his perspective, but because he left out other perspectives. That's all.
Non-disabled people, I really don't want to silence your voice. I want to hear it! But I want you to hear my voice too. So please speak out against the R-word -- but don't forget to mention the effect it has on disabled people. And please, write from your own perspective -- but don't forget to acknowledge ours.
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I got it in your original post, I saw in another blog this misunderstandings and I think you explained very well here what you mean.
ReplyDeleteSpeaking only for myself, I do appreciate the nuance of what you were saying, and I hope I haven't given the impression that I thought otherwise.
ReplyDeleteThank you, Alicia. And thanks Rob, I really appreciate that.
ReplyDeletesometimes my voice sounds sort of high pitched and annoying, and it's at those times that you probably DO want to silence my voice. But I totally get what you're saying here.
ReplyDeletehi zoe,
ReplyDeletethanks for your posts on this and in those dialogues. i am a mom with a son who has mild CP. he is 4. i have just started to come to terms with an identity that includes being a parent of someone with a disability. i am thankful for your blog posts, because i hadn't thought about the issue of my son's voice, and the fact that people would be more sympathetic to what i might have to say compared to what my son has to say. you helped me engage in some perspective taking, and i am thankful. i will keep this on my radar screen and be sure that i am doing everything i can to help the word hear my son's own voice, and not to drown it out with my own.
thanks again.
Zoe, I just finally got around to reading the dialogues this week and this is what I posted on your post. I want you to see it, because your post really affected me profoundly and I want to thank you for that.
ReplyDeleteI know I'm totally late to this dialogue, but I feel compelled to comment, even if no one actually reads it. My son has autism and was diagnosed a couple years ago. I have read dozens of books and hundreds of internet articles about autism, but your post? Yeah, your post taught me the most important lesson ever, with regards to autism and my son. Thank you for opening my eyes, because you're right. I am sure I do tend to sometimes make these same mistakes.
I think it's relatively natural as parents to let our pride get in the way. Even with my 'NT' kids, I want to be the one who makes everything better for them, and if I am being perfectly frank, I sometimes want some thanks and some glory. In a way, I relish that they need me, even though, logically I know that the point is to make them independent. It's about them, not me. But I have to make a conscious effort to remember this and to live by it. This way of thinking does not come naturally to me.
It's hard, though, to watch them grow up and need me a little less everyday. And this is because of my pride, my self-indulgent, self-absorbed personality. I battle it, I really do, but I'm just saying that this is what makes it hard to read posts like this. I feel so protective of my kids, especially my son with autism. It's hard to let go--I don't want anyone to hurt him. But, as with my other two kids, I need to acknowledge that he's smart and capable and that no one is better equipped for expressing what he needs than he is. That I don't know everything. That I am not his savior or his shepherd. I am just his mom, here to help him find his own voice and his own way, not find it for him. That this is not ultimately about me, but about Danny, who happens to have autism.
I am going to print out this post, because if I can remember all you have said, then I will be a truly good advocate for my son, not just a martyr mom who can't let go. So, thank you, Zoe, for being a strong courageous writer who isn't afraid of a confrontation. I am so grateful that my son has people like you starting this revolution, so that maybe by the time he's an adult, people will see these issues in a whole new light.