On Friday, I wrote about my disappointment with Robert Rummel-Hudson's final piece in The Thinking Person's Guide to Autism dialogue series between him and autistic adults Ari Ne'eman and Zoe. Most of that disappointment had to do with the fact that it read as though he hadn't even bothered to read what the other people wrote. Part of it had to do with the fact that the dismissive attitude he took was encouraged by TPGA editor Emily Willingham.
Emily has written a defense of her actions here. I encourage you to read it.
A. She writes as though Rob were a delicate flower, rather than someone who brags about being impolite and had already shown a remarkable capacity for NOT listening to people with autism.
B. Emily displays the same attitude in the Twitter conversation with Rob that she displayed in the comments to the blog post I mentioned in the last article. I also you encourage you to read them.
As I mentioned my previous post, I had a lengthy email exchange with Emily during which I explained how I interpreted those comments, and why they were offensive to me-- these should not have been new ideas to her when I cut-and-pasted them into my discussion of what happened between Rob and her. I didn't just read and misinterpret the Twitter stream, as Emily suggests.
C. This response is disappointing to me because Emily does not allow for possibility that there might have been anything wrong about what she did. As I wrote initially, I never thought she had anything but good intentions. But I don't have anything but good intentions, either. And sometimes I still mess up. Emily messed up here. I would respect her more if she were able to see that and admit it.
And that's quite enough about that.
What's more interesting are the substantive disagreements between Emily and I, which revolve around two things:
1. What is the role of parents in the autism community?
2. How should adults on the autism spectrum relate to autism as an identity?
More on those soon.
And what's most important is that Emily is smart and a good parent and a great writer. I encourage all of you who don't know her work to read this, and see just how awesome she can be. And if you were already a fan, please don't change your opinion of her because of this incident. You should all listen to Emily. She's important.
In my last message regarding the dialogue series that The Thinking Person's Guide to Autism is doing between a parent and two self-advocates, (I explain the whole thing here), I made a notable and deliberate omission.
I wrote this to Robert Rummel-Hudson, after explaining that he might be asking things of people with autism that are impossible for us:
You cannot be expected to know these things. You don't know a lot about autism. But there are several NT people who have followed this closely, who do know a lot about autism, who did not point out to you that you keep asking things that might be impossible for the other person to do.
And I wondered, what's the point of knowing about the communicative challenges that people with autism face if you don't use that knowledge in a situation like this? Why was no one NT giving you the information about autism you needed?
Because I had been so aggressive with Robert in my first piece about him, it was important to me to give him as much space as possible to listen. But I knew that the above was not true. I knew that Shannon Des Roches Rosa had written a piece that did exactly those things, and that Robert had at least been asked to read it.
Shannon's piece is really amazing, and it's here.
Please, please, please, please read it if you have not done so. And visit all of the links-- every one is worth the time. Here's a taste:
If we parents say that we want to have conversations with self-advocates, then we need to do the human thing, and truly listen, try to come into self-advocates' spaces, rather than always expecting them to come into ours. And then try to ask the right questions! As Lynne Soraya wrote about her fourth grade teacher, whose overzealous attempts at forced social inclusion made Lynne miserable, and who wished her teacher would have just asked her why she was rejecting her social overtures, or tried to understand why she was behaving the way she did:
My best teachers did ask why. Better yet, they often read between the lines and came up with the answers themselves. It's sad for me to see that despite all the education and awareness, so many have not learned to do the same. The unfortunate truth is that sometimes, what masquerades as compassion and empathy is really just judgment, in disguise.
It's hard for me not to get defensive when self-advocates are critical. Because I mean well! But why should self-advocates think I'm any different, if their experience has largely been that people in my position discount their experience, and if I'm still talking, not listening?
This is exactly what I want to say, from the point of view of someone who can say it in a way that will make it easier for parents to listen than I can. This here is another long piece, and some of it is going to get sort of uncomfortable for some of you. I would much rather than you invest the time in reading Shannon's post than the rest of this That's not to say that I do not want very much for you to read and understand every word that I have written-- I've worked hard and it's important to me-- but you will probably understand Shannon better. And her tone on this is pitch perfect-- better than mine, or anyone else I have ever read.
Please read "On Parents Listening to Self-Advocates" by Shannon Des Roches Rosa on her blog Squidalicious. Then come back here and read of the rest of this when you have time.
No one does this. That's not the point.
Dear Robert Rummel-Hudson,
1. Thank you for your work advocating on behalf on your daughter. Thank you for your willingness to extend your advocacy behind her needs to the disability community as a whole. My disagreement with you on some key points now, and my anger with you in the past, should not obscure my frank admiration for you. You're a good guy. And thank you for your willingness to enter this discussion with Zoe and Ari.
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.
I have noted that change in your writing, and I want to thank you for it. And I sincerely hope that I have never given you the impression that what you have to say is not relevant or worth listening to. On the contrary, what you and other parents have to say is vitally important to me.
And you are absolutely right about the crucial role that parents play in taking care of their kids and making it possible for them to speak. I would not have the communicative capacity that I have if my mother had not worked with me daily from birth to develop empathy and turn-taking skills, and to love language. Without her intervention, I have no doubt that I would be disabled in ways that were obvious to everyone around me. So I understand and agree with you, also as a teacher who has seen some kids thrive because of engaged parents while others have never become the person they could have been because their parents did not make the heroic effort that would have been required. And again, I thank you and every other parent who is making that heroic effort.
2. I do not doubt every word you write here, and want to emphasize that it matches my experience as a teacher and as an advocate:
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.
All of that is doubtless true. But, again, it brings to mind why I think The Help is a dangerous movie, even though I liked it. We can can all watch it and think, "I would never make my maid use the bathroom outside during a tornado. Therefore, I am not racist. If I had lived back then I would have been just like Skeeter and Tracy Turnblad! Boy, people back then were dumb!"
I am sure that Robert has never seen anything like the cartoon above. No one would do that.
But bigotry does not usually happen in such obvious ways. And everyone is a little bit ableist.
One of the things that inspired this series of articles on privilege was seeing the movie The Help. I've already written about how much it bothered me that the movie, which I enjoyed, depicted a cartoon version of racism that nobody sane would see themselves in. I didn't talk about how unrealistic it was that all of the African American characters seemed to believe that they should be treated equally. None of them showed any evidence that they had internalized the message that they deserved to be treated as property. None of them thought that white people really were smarter than them, and that it would be better to leave things as they were.
Leaving out that part simplifies the story, and it might make the characters easier to relate to, but the most terrible thing about bigotry, and the hardest to admit, is that it makes the people who are its subjects believe that they are worse than the people who despise them.
Another inspiration for this series was the ruckus surrounding a piece that parent advocate Robert Rummel-Hudson wrote about bigoted language in the movie The Change Up. Zoe, an autistic self-advocate complained about Robert's piece, and Robert and a bunch of other parents descended on Zoe with such force that Ari Ne'eman felt the need to call others to rally around.
And Robert treated Ari, who is the only openly autistic person ever to receive a presidential appointment, and all of the other self-advocates who were angry with him, like angry trolls. And other parent advocates seemed to me to offer Robert nothing but support.
This made me angry enough that I wrote this.
This week, The Thinking Person's Guide to Autism is hosting a series of letters between Zoe, Robert, and Ari. Zoe wrote the first letter, which was published today, and which you should read.
This is my loose and lengthy response to it.
"I just think I'm a problem."
An autistic teenager said that to me after the bullying he was undergoing at his school became so bad that his family withdrew him for homeschooling. He knew the school was a problem, and he knew the way other kids treated him was a problem. But he also thought that he himself was a problem. And that breaks my heart.
And it's why it matters to me that parents of kids with autism learn to understand and respect autistic people.
There's been a fascinating round of responses to Robert Rummel-Hudson's reaction to bigoted language in the recent comedy The Change Up. Himself the parent of a nonverbal daughter, Rummel-Hudson imagines a parent going to the film and having her feelings hurt:
That feeling of leaving her child undefended suddenly swells when she hears it. "This one looks a little Downsy." Our imaginary mom is suddenly confronted with a room full of people, laughing right along with famous faces on the screen, in a multi-million dollar production worked on by thousands of people, approved by studio executives, writers, actors. All those cinema professionals, and none of them, NOT ONE, ever said "You know, we're making fun of purely innocent, absolutely blameless people here. We're making a shitty joke about people with disabilities, people who are brothers and sisters and sons and daughters of the moviegoers who are going to pay money to see this film. That strikes me as a dick move. Maybe we shouldn't do this."
There's one sentence there strikes me as problematic-- he makes the assumption that people with disabilities are not going to be seeing the movie and being offended ourselves. It's fine that he focuses on the reaction of a parent like himself, but to extend out to other family members and not include us was, to use his own language, a dick move.
And he was very rightly called out on it by Zoe at Illusion of Competence:
Because, what about people who actually have Down Syndrome? Don’t they go to movies? Don’t people with intellectual and developmental disabilities, who have felt the impact of the R-word firsthand, also appreciate edgy humor sometimes? I’m sure that hearing this kind of language disturbs many non-disabled people, but that doesn’t mean they understand the experience of being used as a punchline.
Zoe made her own dick move in this post, saying this:
The author says that the hypothetical mother feels isolated by “the ones who will always place her and her child and her family apart,” that this humor reminds her of her separation from society. Her separation? Parents of disabled kids are coddled in this society, spoken of as martyrs and given the benefit of every doubt. Even if they abuse their children, even if they kill them, they will have plenty of champions declaiming to the national news that the unbearable strain of a disabled relative excuses all possible actions. It is this mother’s hypothetical child who is isolated, viewed as a freak, shunted into segregated schools and housing, condescended to, joked about. The mother cannot possibly understand what this experience is like. What does she know about isolation?
I share Zoe's frustration that parents often become the objects of sympathy to the exclusion of people with disabilites, but they aren't coddled, and it wasn't okay to write that. Fortunately, Zoe herself gets that, and responded in comments:
I was obviously unclear when I said "coddled." I didn't mean to imply that parents of kids with disabilities have it easy, because I'm aware that families aren't getting the services they need. And I didn't intend to minimize the effort people are putting in to help their kids. Sorry about that, it was a careless word choice.
But Robert has really continued to be a dick, marginalizing self-advocates and treating us with contempt:
I think it is also important to note that you are able to self-advocate, and good for you for that. In that respect, you are extremely lucky. For the vast majority of persons with disabilities, particularly those with developmental disabilities, the kind of freedom that YOU enjoy is impossible without the work of us "coddled" parents. If society behaves as if our jobs are hard, it's because they are, although that same society doesn't get how rewarding our lives with our kids really are. Perhaps society also recognizes that no one else is going to step up and take care of our kids if we stumble and fall.
Anyone who suggests that someone else should be grateful to have decent communicative skills should lose the right to be listened to until he apologizes.
Dr. Faggot vs. Downsy
One other detail in the original column makes me hate the hypthothetical mother that Rummel-Hudson intends me to have such sympathy for:
Let's imagine that this mom likes comedies, and not just polite ones, either. Like most special needs parents, she probably engages in quite a bit of dark humor herself, the jokes and remarks made to her spouse or other special needs parents and no one else. She appreciates edgy humor, and she liked The Hangover, so when a new movie by the same writer comes out, she decides to take a few hours out of her weekend and go see it.
She liked The Hangover, with it's hilarious "Dr. Faggot" anti-gay humor, but "Downsy" makes her cry. Good. She should cry. She's a homophobic hypocrite. This woman deserves to have hateful language hurled at her, not only every time she goes to the movies, but every time she leaves the house, until she gets that gay people deserve to be treated as well as she does.
You don't laugh at "Dr. Faggot," or even just forget it, and then write a whole column about "Downsy."
Robert Rummel-Hudson believes that his feelings-- the feelings of straight people who are related to disabled people-- matter. He writes as though my feelings-- the feelings of a gay man with autism-- are completely unworthy of concern.
So it hurts a lot when someone like Shannon des Roches Rosa piles on with a "let's all get along" post that pretends all sides are equal:
Oftentimes what separates them is not ill will or disrespect, it's lack of each other's contexts.
Rummel-Hudson may not have ill will, but he is filled with disrespect. Pretending otherwise compounds the problem.
I hope that the larger point I was trying to convey isn't lost. Regardless, I apologize to those who felt slighted by my limited perspective. Like any other parent advocate, I stand astride two communities, those of the neurotypical and the disabled, and I don't always feel like I fit in or represent either one of them all that effectively. But I do try, and I will continue to try to improve.)So-- that's that, as far as I'm concerned.