Letter to a Broken Shepherd

No one does this.  That's not the point.


This is my response to the second letter in a series being published by The Thinking Person's Guide to Autism.  I explained the whole thing and responded to the first letter here

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.

You write:

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.

Click here to keep reading.

How many Oriental wives have you got?


3. Brian in the song from Avenue Q above is sort of like parents to disabled kids who haven't learned how to be sensitive when talking about disability issues.  He loves his Asian wife, but he calls her Oriental.  Not because he doesn't love her, or respect her.  Not because he doesn't understand the problems she faces because of her race better than anyone else other than she herself.  He just doesn't know.

But let's imagine that a Chinese guy hears him calling his wife Oriental.  I would guess that guy is going to have at least three reactions:

A.  He is going to be offended to hear a white guy use the term "Oriental."

B.  He is going to have a hard time believing that Brian respects his wife.

C.  No matter how much Brian talks about how much he loves and respects his wife, that is not going to convince this Chinese guy that Brian respects Asian people in general.  Nor should it.

I actually used to have a lot in common with Brian-- we look alike and I dated a Chinese guy very seriously for two years.  So let's imagine that Lei Fung and I had never split up.  Now let's say he had a stroke, and I moved back home to be near my family so that they could help me as I took care of him.  Lei Fung is very traditional-- Chinese customs are important to him.  I would do my best to follow them, and to teach the other white people around him to do the same, but I would mess up.  If he couldn't speak, I would be the best source for information about Chinese stuff in my family, But I would never, ever be Chinese.  Do I understand Chinese culture better than he vast majority of white guys?  Yes.  Do I understand it on the level that Lei Fung does?  No.

Parents of disabled kids understand their own kids better than anyone else.  They understand what it is to be disabled better than most people.  But they do not understand it as well as a disabled person.

4.  One of the things that I think has been crucial to understanding this conflict is that you don't really know very much about autism. You write to Zoe:

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.

There are some expectations here that might be realistic for Zoe, but might be completely impossible for other autistic individuals: 

A. Rapid processing.  Zoe's piece went up a week after Rob's did, and she let him know about it the same day.  A week's lag time is pretty reasonable to me, certainly fair to allow someone with autism without complaint.  We can take a long time to process things, especially when they are highly emotional.

B.  Two-way communication.  Many people with autism are more comfortable monologuing than writing back-and-forth.  I see many people with autism unfairly criticized, even by autistic people, for preferring to engage in one-way communication whenever possible: writing a blog post rather than sending an email.

C.  An expectation of neurotypical politeness.  It was not my impression that Zoe's initial blog post was especially harsh.  For a person with autism who feels offended, it's pretty neutral in tone.

D.  Having an expectation of being heard.  I take you at your word that you would have engaged with Zoe as you say you would have, but my experience as a person with autism is that I am usually ignored by NT people when I try to engage them on these sorts of issues.  So it doesn't make a lot of sense to bother writing something as if I expect the neurotypical person to respond.  It makes a lot more sense to write for a general audience and use that person to make a point to them.   

I am not speaking for Zoe here, and her experience may have been completely different from mine-- but, Robert, you can expect to be listened to in a way that we cannot.  You don't have to put so much effort into communicating that an email correspondence about something you feel strongly about sounds impossible.  You don't know what it's like to have to work hard to be as polite as she was, and to fail drained by that effort, and cheated when you are still treated like a rude creep.  And, again, Zoe may not know any of those experiences, but lots and lots of people with autism do.

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?

And that's what made me mad.

You make me angry again when you write this:

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.

That you are still making the assumption that the people who are writing to you angrily about this are capable of living indecently (okay, that was meant to be independently, but it makes me laugh too much to change) concerns me.  Someone really should have told you not to make that assumption.  You keep complaining that other people did not bother to learn anything about you before attacking, but it looks like you have yet to learn anything of substance about us.  And, again, you seem unable to conceive that having this conversation is probably infinitely easier for you than for an autistic person, in ways that you seem yet to have been asked to imagine. 

Again, it is not your fault that you do not know these things.  It is the fault of people who claim to advocate for people with autism, who have been encouraging you to laugh at the nasty autistics sending you nasty emails, not helping you understand that for you to tell me to be grateful I can communicate as well as I can is like a guy with a  car telling me to be grateful for my bike.  It's gross.

This is what is wrong with the song I posted above.  Yes, everyone is a little bit racist.  And everyone has privilege.  But we don't have equivalent privilege.  I don't think any neurotypical person can imagine what it was like when all of the parents who claim to advocate for people with autism ignored the autistic people who were horrified of the CDC Wandering Code.  In fact, several supposed parent advocates ridiculed and berated autistic people who dared to express disagreement.  I am not aware of any parent advocate who suggested slowing down the process to listen to our concerns, or acting in any way as though our concerns about controlling our own bodies were worth caring about at all. 

This was horrifying, and dehumanizing, and I doubt you have ever experienced anything remotely like it.  So please don't write as though we have anything like equivalent privilege.

5. I agree with you very strongly that parents are an important part of the disability community, but since I am not part of the disability community, I don't get to make that call.  I'm not disabled.  I don't have a kid who's disabled.  But I am autistic. 

It's not like this:

The autism community does not fall within a discrete disability community.


It's like this:

The autism and disability communities overlap, and each blends into the general population.


And here's where I might place you and I on these diagrams:

Actually, I would place Robert slightly closer to the center and myself slightly further away,
but you get the idea.


My point here is that, although I agree with you, and disagree when people tell you and other parents that you are not part of the disability community, it's not my call to make.  I do consider parents part of the autism and Aspergers community-- I try to make this explicit when I talk about thAutcast.  But I don't have diagnosed autism-- so I don't really think that's entirely my call to make, either.

When someone with diagnosed autism or Aspergers tells me I am not part of the autism community, and they do do this, through words and through actions, I let them. It's their call.

And in closing, I want to point out one reason I found it very offensive when you stated your belief that most people with disabilities cannot advocate for themselves.  That bothers me because most people with disabilities do not have any sort of communicative impairment-- they have trouble seeing or hearing, or walking or performing other physical tasks.  They absolutely can advocate for themselves.

Thanks for reading,