I’ve been doing some more thinking about the Self-Advocate/Parent Dialogues on The Thinking Person’s Guide to Autism.
Like many people, I’ve felt frustrated, angry, and saddened by what I’ve watched go on there. And I’m realizing that it’s because, each day, I show up wanting peaceful dialogue, and each day, I find myself in the middle of a protest march that keeps turning into a brawl. It feels exactly like wandering into a demonstration and counter-demonstration in which the police barricades, put in place to keep people from tearing one another apart, keep getting overrun.
Maybe it’s just me (and judging from the events of the past week, I’m beginning to think that it may very well be just me), but there are things that I’ve always expected from a dialogue, and that I’ve always assumed were both necessary and reasonable:
- Expressions of respect for the other party
- Listening and responding rather than reacting
- Speaking with civility, even in the midst of great anger
- Asking questions that go to the heart of intent
- Equal time and representation for both sides to express their perspectives
- Care and concern for individuals across division
- An ability to acknowledge errors on both sides
But here are the things that I’m seeing in the The Dialogues:
- Yelling. And I mean yelling that happens IN ALL CAPS because otherwise, MAYBE other people won’t KNOW how WRONG they OBVIOUSLY ARE.
- People taking their pain out on one another. I see parents doing it because they feel stressed and abandoned and get to do it everywhere else in the autism world, and I see autistics doing it because they feel stressed and abandoned and never get to do it anywhere else in the autism world. On behalf of both parties, it hurts me to watch.
- Accusations of ill-intent along the lines of “You’re just trying to derail the conversation,” as though accusing someone of derailing the conversation — rather than bringing the conversation back on point — isn’t derailing the conversation.
- Lots and lots of sentences beginning with “You,” such as “You just refuse to understand” and “You need to park your privilege at the door” and “You have no right to be upset about whatever it is you’re upset about, because it’s irrelevant.”
Anyone here ever try to carry on a relationship in which both parties start every sentence with “you” rather than with “I”? It doesn’t go well. Telling the other person everything he or she has done wrong, over and over, instead of talking about its impact on you and what you want to see change, usually doesn’t get you very far. It’s quite cathartic, but in the end, it damages the relationship, and then there is repair work to do on top of the problems that were there in the first place.
- People laughing derisively at each other, judging each other, attacking each other, and accusing each other of saying things they never said and meaning things they never meant.
- People treating one another as walking incarnations of all of life’s injustices, rather than as actual people with feelings and thoughts and tears. It’s easy to take a swipe at an incarnation of life’s injustices. It’s quite a bit more difficult to do it when you realize that a person is standing in front of you.
- People getting their feelings trampled underfoot on the road to — what? Making life better for all of us? Excellent. But there’s one little problem: I’m not all that interested in creating change with people who think that’s the way to go about it — for the simple reason that I fear for what the world will look like when we get there.
- People being unable to acknowledge any wrongdoing, either because they’re oppressed and the wrongs done them are so much worse than what they’ve done to others, or because as long as the cause is right, who cares? So, unlike most people who seem to have moved on as though nothing happened, I’m still pissed as hell at what happened to Emily, and I’m still waiting for someone else to sober up and say, “My God, we’re so sorry. You didn’t deserve that.” And I can feel, in my bones, just how irrelevant people seem to think that is. Who cares about Emily when we’re talking about oppression?
I do. It’s not that I think that Emily is still hurting. It’s the failure to take responsibility that concerns me so much. If we can’t engage in self-reflection and mend things that are broken in our community, how can we have a prayer of mending a broken world?
I’m having memories of my days in Berkeley, when I’d go to gatherings about social justice issues, hoping to listen to a few speakers and have a reasoned discussion, only to watch people yell and punch holes in walls and talk about how it wasn’t such a big deal because people were suffering in the world. Yeah, the wall doesn’t suffer, but the people in the room who watch it happen do. It’s scary, it’s intimidating, and it’s not conducive to dialogue.
Now, I can hear the objections to everything I’m saying here: “Well, we’re oppressed. You can’t expect us to be civil and well-spoken about it. There is too much at stake. And besides, we’re angry. And besides, why don’t you talk about what we’re saying rather than about how we’re saying it?”
All I can say is that, in a protest march, or in a diatribe, you have to yell and say what you have to say, however you want to say it. And I share your suffering, and I share your desire to be loud about it, and I want change to happen right now, just as you do. I’m a member of two minority groups that have suffered bitterly for generations upon generations, so I can hardly be accused of not getting it.
But a dialogue involves something very different. A dialogue involves saying things in a way that other people can hear them. This is not an argument from tone. This is a realistic appraisal of how to work around people’s defenses and get them to hear us so that we can make change. We can’t get people to listen to us by telling them that we’re right and they’re wrong, over and over. They’ll either put up their defenses and start beating up on us in the same way, or they’ll go away altogether. Either way, we’ve lost much-needed allies.
When I look at history, I see oppressed people creating change by forming alliances with the majority, and by doing it in a way that takes the moral high ground. The civil rights movement finally had its day because Martin Luther King, Jr. invited white folk to join him in taking that moral high ground. You had people who had watched their loved ones lynched and raped, but they came together, in the spirit of peaceful dialogue and a yearning for justice, with representatives of the privileged class whose members had done the lynching and raping.
That’s what I keep hoping for: that we carry this forward with some discipline, some respect for the perspective of the other, and some trust that we can make change by being the change we want to see. But after the events of the past week, my sense is that we’re a long, long way from there.
© 2011 by Rachel Cohen-Rottenberg
Thank you for your respectful words, Rachel. This entire episode is very frightening for me. Protests are frightening, in general. The noise and emotion make me recoil, even if it is typewritten noise.
A dialogue should be what we aim for. Dialogue builds empathy, understanding and compassion.
I don’t despair that dialogues will be held. Once a place has attracted a certain level of drama, those who feed off it will be back for more unless someone puts an end to that behavior.
I am glad for the safe places that have been created for discourse. Thank you for being a person who provides such havens.
Thanks, Lori. Creating safe space is very important to me.
Hi Rachel
It is painful and frustrating to watch, for sure. I really appreciate the ways that you’ve contributed: pointing out assumptions of ill-intent, clarifying the difference between intent and impact, re-focusing the conversation. It’s hard work, and you seem to be the only one doing it (actively attempting to moderate the conversation).
I think I may feel a little more hopeful than you about it, though. Not because I don’t see all the flaws and frustrations that you’ve pointed out here, but because I’m also seeing the little aha! moments and watching a couple commenters process and change their point of view over the course of the last two weeks. And I guess I’m hoping that every comment like that also represents a section of the silent audience.
Could there have been a whole lot more of that if the dialogues were moderated effectively, if people were more focused on the topic at hand and less on tearing each other down? Absolutely. I think this point really gets at the heart of the problem:
“Telling the other person everything he or she has done wrong, over and over, instead of talking about its impact on you and what you want to see change, usually doesn’t get you very far. It’s quite cathartic, but in the end, it damages the relationship, and then there is repair work to do on top of the problems that were there in the first place.”
Exactly. And unfortunately, for every aha! moment, there is another new misunderstanding to be repaired.
Yes, Emily deserves an apology. So do at least a dozen other participants in this process, both posters and commenters. The tough part is that some of those who I think deserve apologies also owe apologies to others. Apologizing for your own mistakes *without worrying about whether other people acknowledge theirs* is the high road, and I truly admire people who do it. But I’ve seen very little willingness to do that in this process, and I agree with you that until that happens, it is hard to move forward.
Hi Sarah,
Like you, I’m very glad that people have had these “aha!” moments and I’m hoping that, in the future, they won’t come at the cost of so much damage. For all the people who arrived at new understandings, there are also a lot of people who have been driven off and feel resistant to engaging again. So there’s damage that needs repairing, and then there’s work to do creating safe spaces so that people might consider taking part in the conversation. I hope we get there. I really do.
Rachel,
Can I just say that I love you? As I’ve skimmed the articles and the comments involved with this conversation, I see you there on the front lines, being direct and honest and compassionate to both sides of the dialogue, attempting to clarify misunderstandings and offer counterpoints, all with patience and incredible empathy. I’ve loved your writing and her perspectives for a while, now, and I love what you’re doing with the Autism and Empathy project, but I also love what your voice adds to this conversation. I love that you recognize the importance of this dialogue, even when you despair that it isn’t really helping.
So, I just wanted to personally give you kudos.
Thank you for being you, and being here, and being involved.
Thank you so much, Devon. When I read your comment, I actually said out loud, “Oh, wow, what an incredibly kind thing to say.” I really appreciate it.
I didn’t read the comments. Mostly because I suspected that’s where the degeneration of respectful discussion would occur. And it sounds like I was right.
It’s actually very disheartening to me. This whole thing. I used to think there was a way people could come together.
I don’t suffer from that illusion anymore.
It was quite disheartening. But the posts themselves were very good, I thought.
I agree. I thought they were very well thought out, and not too terribly contentious.
I just wanted to say ‘thank you’.
I’m going to re-read your post because I want every word to sink in.
Thank you, Angel.
I don’t disagree with much of what you’ve said Rachel, but I definitely have a very different perspective on what’s happening in the dialogues. I don’t think it’s reasonable to expect this volume of people – who (mostly) don’t know each other in real life, who all come from drastically different backgrounds and even neurologies, who bring with them baggage of all sorts and communication styles of all kinds – its not reasonable to expect nothing but courteous discourse when you bring them all together to talk about heated issues. It’s likely not reasonable to even expect MOST of the discourse – at least in the beginning – to be very couteous. It takes time for people to air their feelings, get a sense of how their communication style and content is affecting others, and then come back in and retry.
I think given what this could have looked like, it’s gone AMAZINGLY well. I have been really impressed with the vast majority of commenters; we have all made mistakes – but that’s part of dialogue.
I fully respect why you are writing this post, but I worry about how many bloggers are out there critiquing the dialogues rather than the issues being discussed IN the dialogues (I know you have been in the dialogues in very helpful ways, so I don’t mean to imply you are *only* critiquing them), because as Laura shows in her comment – it can have the effect of making people afraid to delve in, even if only to read the comments. Laura, if you read the comments, you would see THAT is where people ARE coming together. Sure there is lots of debate and disagreement there too, but that’s part of finding common ground. (PS, I use caps to emphasize words but not yell… I don’t know how to do italics and my use of * gets repetitive…)
The dialogues are worth reading in their entirety. There are some really amazing examples of people coming together and learning things they may never have, without this series.
I don’t really understand the “what happened to Emily” part… There may be things I don’t know about, since I don’t know Emily and don’t follow her blog. But I think there was indeed an error in judgement that happened on her part – her intentions may have been purely innocent but it would have helped the situation if she had come right out with a recognition that it wasn’t the wisest decision to be having that discourse with Robert while the dialogues were going on. I think owning that would have eliminated many of the ‘after-shocks’. I think we saw that happen when Melody posted an immediate “I regret that choice” comment regarding contacting Robert via email. As Melody said, there are consequences even for choices that you meant no harm by, and she took hers.
I’m also not sure which allies you feel you have lost in these dialogues? I certainly hope that hasn’t happened but I have to say, from my perspective, if someone ‘leaves’ you as an ally because of these dialogues… I’m not at all sure they were really an ally to begin with.
Just a note, the main reason I think Rachel post is important is because she is part of the dialogue and is a trying to have a neutral and important attitude, I have seen people saying they are scared and criticizing the whole thing without trying to participate. I think things aren’t that bad, but many can feel differently and is important to listen why.
About the Caps Lock, most people understand that as yelling, the reason why I don’t always see like that is because I was part of a group that had a big discussion with a new member for writing a e-mail with caps lock, the new member was sad and insulted and told us she didn’t know about that rule and she had a problem with reduced vision, somehow that made me always have in mind that not everyone yells with caps lock, but people take that way, so the same way people judge Emily because of bad twitter communication, people are going to judge because of someone use of caps lock, we always assume things.
That’s an excellent point, Alicia. I am making assumptions about the use of the caps lock. My experience is that people use all caps as though they’re raising their voices, and that’s always an aversive experience for me. But there could be other reasons.
Re: the caps lock issue on TPGA. There is no way to mark-up text for emphasis (at least none that I have found). I have had to resort to all caps for the occasional word that would have been italicized (which, IMO, is a perfectly normal thing one might want to do when writing).
Caitlin, I respect that you have had a different experience of these dialogues, and I’m glad they’ve been meaningful to you. My concern is that, for a great many of us, the way that things were carried on made it impossible to speak to the issues at all. Sure, the people who were able to weather it got a lot of things said. But what about the rest of us who couldn’t even begin to enter the discussion? We’re out here. I’m not asking for courtesy all the time; I’m asking for some commitment to civility in dialogue. It was there in the beginning, and then the issue with Emily and Rob happened, and everything started going downhill.
Emily didn’t come right out with a recognition that having the Twitter conversation with Robert wasn’t the best idea because a) she felt that there were good reasons she had had the conversation and she stood by them, and b) the mere fact of having the conversation was not the immediate issue. People read the Twitter conversation and jumped to an immediate and unwarranted conclusion that she was aiding and abetting an attempt to derail the dialogues and silence autistics — without asking her what she had really intended, and without considering the improbability of a TPGA editor sabotaging what her fellow editors were doing. It wasn’t just that she had had the conversation; it was their misinterpretation of the content of the conversation that people were using to attack her. I read the Twitter conversation and came up with a completely different interpretation; what I saw was Emily doing reflective listening with Rob, speaking to his fears, and trying to help him get past them, and I did not see her suggesting that he should be ignoring what people think or feel. As it turns out, I was absolutely right. Emily had to write two posts to explain herself, in the midst of a whole lot of hurtful words being cast in her direction. And instead of people stepping up and apologizing to Emily for the things they’d said about her motives and her meaning, they started talking about how she needed to take responsibility for having had the conversation at all. Yes, perhaps it wasn’t the wisest choice, but it certainly doesn’t justify other people’s actions, and it certainly isn’t her fault that people misinterpreted what she meant and levelled their pain at her.
I’m concerned that there are people reading The Dialogues whom we might have brought in as allies if they’d felt safe enough to enter the conversation, and who now aren’t going to want to venture into another one. And I’m speaking of both nondisabled and disabled people here. There are a lot of autistic people who didn’t want to come near that conversation either. From my perspective, if we want people to come in and build alliances with us, we have to build safe spaces in which it can happen. Most people do not want to deal with the stuff that happened on TPGA these past two weeks, and it doesn’t mean that they don’t care about autistic people and our human rights. It just means that they don’t much care to walk into a space in which civility is in such clear and present danger when it’s not absent altogether. If the way the participants treated one another is fine with them, that’s great, and I’m glad they got something out of it. But it’s not fine with a lot of us who don’t want to be the objects of that sort of treatment. And we matter, too.
You’re right on in that last paragraph, Rachel. I’ve never felt more alien or intimidated than while reading the comments of these posts.
I was sick during the dialogues, and not online, so when I came back and heard what people I trust (including you) were saying about them–I want no part of them.
Your statements about what is and what is not a dialogue and what is and is not helpful in creating allies, as well as the need for both, were right.
I know I’ve had plenty of misunderstandings in my attempts to communicate on these issues, but I also know (even if the relationship isn’t salvageable) that it’s important to rectify misunderstandings whenever possible.
Communication isn’t saying what you have to say. It’s about other people hearing what you have to say, and you hearing what they have to say.
From what I can tell, that’s not what many of the comments were about, and I have enough to deal with in my own life that I don’t need/want to deal with that, too.
And that’s the crux: Life is hard for all of us. Together, we can make it better. If we break each other to pieces, it’ll just be harder.
I’m in total agreement with Caitlin about this. I think at the beginning of the dialogue, there was a lot of anger and resentment from both self-advocates and parent advocates. Frankly, I believe that there are some people who simply are not ready to have this conversation. But, you know what? It seems like many of those people have left. Every day, the comments get more productive. Read the comments on Amanda’s posts today, for instance. So far, everyone in this dialogue is truly trying to understand each other, is listening, is asking for clarification when something rubs them the wrong way. It’s incredibly respectful.
By the way, I’m considering “the dialogue” mostly to be about the comments, not about the posts.
And, in case it wasn’t otherwise clear, when I said, “So far, everyone in this dialogue is truly trying to understand each other…”, I meant the comments for Amanda’s post.
I’m noticing fewer people on today — I think people are probably getting tired — and the parents who have had dissenting opinions and were unhappy with what was going on have all left. So I’m not sure that this is really progress. Of the ones who remain, one of them got her words pounced on when she was trying to say something very kind and appreciative about Amanda’s piece, and was told that this wasn’t about her feelings, but about ours. It’s painful to have to respond to a statement like that, because it goes against what dialogue is for. If I have to say that she should have space to have her feelings, and if I’m the only one to say it, is a dialogue actually going at all?
It’s not surprising to me that parents aren’t speaking up with dissenting opinions anymore. I’m really upset about that, because despite the fact that people keep insisting that autistic people should get more airtime in the Dialogues because we get so little elsewhere, I really wanted the parents who come on to feel that they could stay and disagree and put their foot in it and mess up and be welcome. Most people are not going to be open to learning while people are shouting at them, and I really think that a great opportunity has been lost. These are not parents who don’t care about dialogue, or who want to take up all the space. They’re parents who cared enough to try to engage and listen.
Yes, but it seemed to me that some (on both sides) truly weren’t listening. If these people aren’t ready to listen, then you can’t expect to have a productive dialogue.
And I don’t agree that the parent that spoke today was getting “pounced on.” In fact, what I saw was everybody being really cautious about NOT being perceived as pouncing on anyone. Perhaps Shaun could have said some things a bit more tactfully, but, as one person put it in the dialogue, it seems like people are getting upset because autistic people are communicating like autistic people (not to generalize here, but that was the gist of what was said). The issue was clarified with that parent, and everyone realized that they were in violent agreement.
[Jonathan: I moved your comment up so that it's clear what you were responding to. -- RCR]
There’s a difference between communicating like an autistic person and being uncivil. I communicate like an autistic person. I’m very direct, but I do my best to be civil while I’m at it, which means that I stay well away from the kinds of things I’ve been seeing in the Dialogues. Obviously, I’m not perfect, but I consider civility to be of great value in keeping the peace between human beings, and I work very hard at it. Most people have to work hard at it, for the simple reason that it’s so easy to just react when you’re angry or in pain or afraid. There’s nothing about autism that means people can’t be mindful of these things. In fact, most autistic people I know are mindful to a fault.
Johnathon, as parents we live with people who “communicate like Autistic people”. We also spend much time around Autistic people outside our own families in many cases. So I think most of us are OK with the direct styles of communicating. I personally prefer that communication style, as it is like my own. What I struggle with is invalidation. Being told my child’s pain and struggles are not mine. Because it feels like they are. My son is still very young, but the teasing, the difficulties to communicate and the various other issues he struggles with that I do not need to elaborate on in this company, cause him suffering, and this causes me suffering too. My bottomless love for him, means I only want the best. It hurts me deeply, when he hurts. I completely support the aims of self advocates. I really do. I just find it painful to listen to the message when it discounts my own pain and fears.
I hope this makes sense. I’m not trying to make this conversation about me as a parent over the feelings of advocates, I am just trying to convey the emotional impact I experience when reading some of the comments at TPGTA. Maybe it’s not reasonable to be so defensive? But it is how I feel and I hope you appreciate my candour in sharing this with you here. Where it feels much safer to do so.
I think that is a important post here, I will try to remember what you said.
I personaly don’t like some things, like yelling(Caps lock) or some sayings, but I have not done my part of saying that was wrong there and I did have wrong behaviours.
I don’t think that the dialogue is going so bad, or that is not being a dialogue even if it looks more like a protest, maybe is because after a long time not being heard I think I need to yell for someone to listen, especially when I believe they are giving reasons not to listen, I do know I’m guilty of things you criticize here and I admit acting wrongly, I will keep that in mind.
I agree that the accusations against Emily were wrong, I didn’t know who she was until that so I don’t have a context here, now I read her blog, it seems she is a parent that understand things so I don’t see why the suspicions.
I appreciate your views that are more wise and calm than mine.
Hi Alicia, just to clarify: I don’t have a problem with using TPGA as a platform for protest, as long as that’s what it’s called. I’ve done my share of protests in my life, and I understand how important they are. But when something is called “The Dialogues,” it sets up a certain expectation, at least in my mind, that is very different. I think that the TPGA editors wanted dialogue — in fact, I think they’re committed to dialogue — but what they got was protest. It’s very, very difficult — if not impossible — to have a dialogue with people in the midst of a protest.
Thank you, I understand it.
I hope that we are learning and a real dialogue can happen someday.
I thank you for this post. I’ve wanted to comment many times over there but felt that anything I said would be misunderstood. As a parent with kids with numerous disabilities, I’d love to have a dialogue with you with these as the ground rules for sure and I know a great deal many other parents of kids with disabilities that would say the same thing.
I still think a lot of good can come from working together as a larger group, while still advocating for our individual desires by disability.
I hear you Julia, and have had the same reaction. I am still learning and processing and am afraid any comments I make are likely to be misunderstood, misheard, or just attacked based on issues and history I have not been aware of.
Rachel, adore your piece. You speak what I wish I could have said. And to be honest, the discussion might be better now, but I was so turned off from last week I just don’t have the emotional energy to do it again. And that means I might be missing something good, because of all the ugly….
Rachel… thank you so much for your clarity and calmness. Thank you thank you.
Aren’t the discussions with a lot less people? I’ve not been on since this morning, but aren’t the same people just commenting now?
I also felt quite intimidated to comment. Like no matter what I said it would be misconstrued so I didn’t bother. Not good for any cause but sometimes you don’t want to be where you’re not welcome.
To Rachel: yes, yes (all caps) YES to what you said about “what the world will look like when we get there. We talk a lot about respect, but then don’t actually respect people. I know I’ve been guilty of that behind the shield of my computer screen.
Thanks, Jennie. I’m a big believer in being the change you want to see.
Thanks for this, Rachel. As much as I wish it was possible to maintain the civility you and I both crave, I don’t know how reasonable that is — not just in the autism community but on the Internet in general — when contentious topics are discussed in a diverse group. I am hoping that, in some ways, these Dialogues may serve as the chaos from which something good is born — the oft-discussed PFLAG-like group, for instance; I met with a self-advocate’s parent about possible direction this morning, for instance, and have heard from self-advocates who are interested as well, based on their participation in the series.
As for moderation in terms of editors guiding the discussion, we feel that would be interference, and would undermine the spirit of open dialogue. The comments do post to the site without pre-approval, but I can assure you that the editorial team reads every one — so there is moderation in terms of supervision. And we developed and posted community guidelines during the Dialogues as well, to give direction. I will post the link to the guidelines in the opening to the next two days’ posts.
We’re learning, the community is learning, it can be painful, I wish the bumpy parts weren’t necessary. If we run another Dialogues series, I think we’ll be able to incorporate what we’ve learned. And I have posted a link to this post on TPGA FB, in the hope that readers will come here and not just consider but take to heart your recommendations.
I know it would be very difficult to pull off, but I don’t think good moderation has to interfere with open dialogue.
What Rachel has been doing in her comments — refocusing the dialogue on the stated topic of the dialogue and reminding people of the ground rules — has only added to the discussion. The law of entropy ensures that all unmoderated online conversations on controversial topics devolve into shouting matches pretty quickly.
I think including the ground rules as a preamble to each post is a great idea. I’m sure nobody wants this job, but I vote for Shannon and Rachel as moderators next time around, if there is a next time. You’re both well-respected and even-handed. I think the promise of ground rules and moderation would draw in a much wider group of people to the conversation. Otherwise those who choose to comment are reduced to a group self-selected for their ability to thrive in a shouty environment, rather than a group with the most insightful or representative things to say.
Thanks, Shannon. I think you and the other editors have done an outstanding job here, and nothing I’m saying takes away from that.
But I really disagree with your feelings about moderating future Dialogues. I don’t think that you can have productive dialogues about contentious issues, on the Internet or elsewhere, without a moderator and mutually agreed upon ground rules and goals. I used to help moderate a very active listserv some years ago, and at the time, it was the only one on the subject that didn’t degenerate into ad hominem attacks and all manner of chaos. It was in a context much like the present one, in which there was a lot of conflict and people had a very difficult time talking across the lines of difference. But we worked with people on how to strategize and express what they had to say so that they could be heard by the other side without losing or watering down content. It was a hard process, but people did it because they felt so strongly that they needed to be heard on issues that were critical to them. It was a very satisfying and meaningful experience. I came out of it with connections to people that I wouldn’t have had otherwise. So I know that it’s possible.
I am not suggesting that you moderate TPGA all the time. Not at all. That would be onerous. But if you ever decide to do another round of Dialogues, I think it’s something to strongly consider.
Of course, I love you and the site and leave it to your wisdom to make the choices that make sense for you.
I also want to clarify that when I say “moderation” I’m not talking about capturing all comments and reviewing them before posting. I’m talking about letting comments be posted, and then responding to them when necessary — reaffirming people’s right to speak without being insulted or shouted down, refocusing on the topic, mirroring back what you think is being said if somebody else is misinterpreting it.
One problem with that approach, I think, is that once someone says something that derails discussion, it doesn’t much matter if someone comes in and tries to guide the discussion back. People get provoked and you lose control of the process. Especially when people are so stressed and feelings run so high, there is no way to undo the impact.
I agree, Rachel.
When a discourse turns from orderly and calm to chaotic and heated, I wilt. Some people are fragile enough that very strong moderation is needed to keep them around. Others are vigorous, and empowered by dynamic discussion.
I feel like I’m not ready to play with the big kids! It’s good that people care enough to make things better.
Listening. I am going to take this thread to the editorial team and we will give it some serious thought. This is absolutely not a blow-off.
Thanks, Shannon.
Control. There is nothing that has occured so far in the “dialogues” that requires anyone to affirm someone’s right to speak, or to refocus (my belief is that folks have done a good job of sticking to topic), and, OMG, “mirroring” back what some moderating person thinks is being said. The statements have been been honest and straighforard and the comments, well, if not always polits, have been bracing and from the heart.
What is it about this is so upsetting that we would recommend a third party to intervene?
Young people cannot become who they need to be without pushing away from their parents and, in the case of young people with disabilities, from the “parent community”. Do their words hurt us at times? Yes. But this is true of all young people. they break away, push back, reject and dismay . . . it’s hard to hear and except. But it’s a natural and welcome part of the development of the advocacy community as well.
Jamie, what you’re saying about young adults breaking away from their parents and standing on their own ground is absolutely true. And what’s also true is that the autism community, like the larger disability community, is multigenerational, and many of us are no longer dealing with those issues. I appreciate how hard it is to carve out a sense of an empowered identity as a young adult, especially as a disabled young adult. But the young adults are not the only ones here, and I don’t feel that the working out of these issues ought to be the only thing setting the tone for these conversations. A lot of us have other concerns— like putting to use what our experience has taught us over the course of a lifetime — and we need to have space here, too.
The young adult self-advocates can do things that I cannot do anymore, because some of my disabilities have become so much more challenging, and I honor what they do. But by the same token, we older autistics bring experience and perspective to these conversations that get lost in all the yelling. So I think there needs to be room for both.
Thank you for explaining your feelings Rachel. I have really thought about them… and the feeling that you (and others) are excluded from the dialogue because you feel uncomfortable with the way it’s unfolding. I’m not ok with that… but I am going to think on that longer… because I don’t have a solution or even a suggestion to resolve that at this point… but I do think it’s an important point as Alicia said. I am wondering if any conversation like this is going to result in a certain part of the population not feeling like they can really jump in… is that perhaps inevitable? I don’t know… still thinking.
I really, really thought about the moderation idea (which occurred to me as well) but when I envision how that would play out… I think it would almost certainly stifle the conversation in very significant ways:
As you said, there have been comments made that offended you, and others that didn’t, while the same comments have the reverse impact on others. If TPGA had to moderate – step in to redirect or caution against mis-steps… they will be doing it from their own individual biases – when they themselves are not actually a part of the dialogue. So… I’m very concerned that they would a)be in an impossible position trying to interpret what is acceptable and what is not, and would end up looking like they were taking sides, and b) it would rob the process of the very organic way that resolution is developing.
As Jonathan said, things are (to my view) actually getting better. I really struggle to see the ‘gone downhill’ part, because there have been more and more agreements, positive exchanges, and respectful discourse in the comments every day, and every day so far has been better than the last. To me this is a sign that we are ‘working things out’. This may not prove true by the end of the dialogues but I still feel it has been a definite pattern of progress.
The organic dialogue process means we (the participants) must rely on each other to moderate. And specifically, we must rely on our own communities to moderate our respective participants. This is certainly what I have tried to do (very imperfectly) by expressing my disatisfaction or disappointment when a parent posts something detrimental, and conversely, expressing my agreement and enthusiasm when a parent participates in a way I feel is really valuable. I have see you and many other autistic advocates do the same for your community in the dialogues.
And to me, that just feels right. And I am by no means saying you can’t direct your comments on respectfulness and civility to a parent or vice versa for me, but rather than as an overall strategy for allowing the dialogues to progress, it feels right that we are moderating our own communities’ participation, rather than having TPGA step in.
Another benefit of doing our own moderation, is that when we really do resolve our conflicts one by one – which is happening at the TPGA site – WE own that success. WE learn from our OWN trial and error, how to ‘be’ with each other, rather than having the TPGA voice step in and tell us how we *should* be achieving that. And I think there is real tangible value in participants learning to ‘be’ with one another and figuring each other out on their own. Dusting ourselves off after failures, moving on, and feeling a sense of unity and mutual success when we reach resolution.
I’m not at all sure we would have that same sense of real community building, if TPGA was stepping in. It would feel more… manufactured.
The current process is, as Shannon said, imperfect… but I think to some extent it is those imperfections that are pushing us to take the most significant leaps forward.
Caitlin, in my experience as a moderator, it’s not about making judgment calls as to what is offensive. It’s about having clear guidelines and making sure that the comments adhere to them and make for productive discussion. That’s critical for dialogue in a situation of conflict.
I don’t think it would be an imposition to come up with guidelines and get buy-in on them from the participants before proceeding, rather than people constantly having to step up to people in their respective communities on an ad hoc basis. I stood up to other autistics, but I didn’t feel safe doing it at all, because most of the time, I was defending the right of parents to speak without people howling at them, and it was very, very clear that a lot of people in the interchanges felt perfectly justified in doing so. The message seemed to be “We’ve been oppressed, so we don’t have to be civil,” and while that’s absolutely appropriate in a number of different arenas, it’s counterproductive when having a dialogue. I mean, people were telling parents outright that it wasn’t about their feelings, but about ours. That’s fine if you’re simply in protest mode, or if it’s an autistics-only discussion, or if it’s set up for autistics to talk and for other people to just listen. And all of those are perfectly valid formats, but none of them are about dialogue. Dialogue assumes a willingness to let other people have their feelings and express them safely, and a desire to have everyone be equally heard. There was absolutely no agreement on that at all. In fact, I seemed to be one of the few people speaking up for that principle.
I realize that parents were saying things that were very provoking to people, but most of them weren’t doing it intentionally, and they constantly got pounced on as though they were — and as though they were nothing more than representatives of the oppressor class who just couldn’t help themselves. They were coming in from the outside and not knowing where the potholes were; when they fell into them, I cringed, because I knew what the response would be. I understand the anger and weariness that autistic people feel, believe me, but if we’re going to have real dialogue, we have to figure out how to channel it so that people can make mistakes and not feel like they’re going to get beat up over it.
And I really don’t like the idea of the guidelines growing organically from the Dialogues themselves, because that means only the people who can tolerate what’s going on right now will be the ones with the input, and the rest of us will be on the sidelines, without a voice.
Thank you. Thank you for speaking of dialogue and civility. There is too much at stake here for too many people for diatribe and yelling. Thank you for a voice of wisdom above the noise. We all need to move beyond the noise and get to work.
Sarah
Thank you for your kind words, Sarah.
Rachel –
I took note of you through the comments before I chose to stop reading the “Dailogues” as you were one of very few people who truly seemed to understand just what it means, to have a dialogue – as opposed to what has been happening there. Your post here just proved me right
I couldn’t agree with you more, and there are many of us who feel this way, many who left the series, who now feel alienated, many who as you said, came to find a place of support and respect and left because what they found instead was a lion’s den.
I do not think it should be considered a good thing, as some have suggested, that people have left. Of course things are going better – no one who might have had a valuable contribution but would have been attacked for it, stayed. I can tell you that several people have mentioned to me feeling like they were reading comment threads on AoA… this is not a flattering comparison I assure you and the saddest part is, it’s true.
There has been a fairly successful purging of all that might have had a dissenting view, and that, is pretty much the opposite of bringing us together, last time I checked. I’m not exactly sure what kind of “community” is being built, as you said, I don’t really think that if what we’ve seen there is any indication, that it’s one I want to be a part of.
Many people that have tried to participate over the course of this deserve apologies, I doubt however, that they will get them. It still seems as though the prevailing thought at TPGA is that the end justifies the means.
I don’t agree. Not when you’re hurting people, not when you’re creating more division. “Eureka” moments do not justify the amount of damage that has been done.
Anyway, this was a brilliant, thoughtful post, exactly how I’ve been feeling the whole time, so thank you for writing this.
Sarah,
There have certainly been bumps in the road, no doubt about that. I didn’t mean to imply that I thought it was unilaterally a good thing that people were leaving. But… if people are not ready to have a real dialogue and actually listen to what the other person is saying, there’s no point in them being there. They are simply going to make a lot of angry remarks which are counterproductive to good dialogue. Don’t get me wrong; there is anger on BOTH sides of this issue.
As many have said, this kind of dialogue is not only difficult, it’s downright painful at times. But the dialogue continues, even if it’s taken 7 days to “weed out” most of the people who aren’t ready to have it (not implying that people are weeds here). And that’s not a character judgment of those people who choose to remove themselves from the conversation, i.e. I’m not saying those people are bad people for doing so. In many cases, they are just tired and drained from the experience. And that’s okay.
What’s important is that there is still productive dialogue happening, even if it’s among fewer people than we’d all like to see. There is still valuable information and perspectives being shared that weren’t being shared before. How is that a bad thing?
Jonathan, it’s not a bad thing that people are sharing perspectives and information. It’s a bad thing that so many people feel that they can’t participate because the environment feels so unsafe. It’s not just the people who aren’t interested in dialogue who have been weeded out. It’s even more people who *are* interested in dialogue but found the environment intolerable and left. And a number of other people took one look at what was happening and never bothered to post a comment.
If it’s only a small number of people sharing perspectives because a whole lot of people felt run off, then the space is just there for people who can tolerate what’s happened, and it’s not there for anyone else..
I’m glad that you and Caitlin and others have found this to be a good experience. I really am. But in order to dialogue to be representative and for everyone to be heard, it has to be inclusive of people with a range of needs, not just the ones who can tolerate the way things have gone.
Jonathan –
The point that both Rachel and I are making is that this isn’t, and hasn’t actually been, a “dialogue”. If you read Rachel’s post here very carefully, she explains the difference between one, and what has been going on at TPGA under the guise of one. It’s not that “people aren’t ready”. It’s that when there’s clearly no allowance nor acceptance of a thought, comment, opinion, or idea that has come from a non-disabled person, it means we’re not wanted. Not wanted, not needed, not accepted, not taken seriously, not considered valid nor important to this “dialogue” in any way. That is why we leave and have left. Am I “ready” to be told I have no business there? Sure, but then I’m leaving, and I’m not likely coming back and don’t kid yourself in to thinking I’m not ready. I have no problem hearing what you have to say, or what anyone else has to say. As long as you’re willing to hear back. What I have no interest in is being attacked for no reason except that I’m not disabled and have an opinion.
This was labeled as a “dialogue”, and billed as an arena for non-disabled parent advocates and disabled self-advocates to listen to each other to work toward better understanding. That’s very far from what’s been going on. If this had been billed as “Autism Self-Advocates Forum”, that would have been more appropriate, and most of us wouldn’t have shown up expecting to be given equal consideration if we chose to participate in any way.
It’s bad that people have been driven away and made to feel the way they have regardless of whether or not you think anything good is truly being accomplished now. How can it be a good thing?? Again, that’s the end justifying the means. For my part I have lost my trust in TPGA. And a certain degree of respect. There has been such a glaring double standard that it’s impossible to forget. I’ve even been a contributer there on a couple of occasions, but I have been so dismayed and saddened by the events of this series, I am not likely to be back and frankly, wouldn’t feel welcome any more anyway.
I am not the only one who feels this way. Many people do. So no, it’s not a good thing even if there have been some moments.
My understand was that the “dialogue” was originally supposed to be between Zoe, Robert, and Ari about the issues surrounding Rob’s post on his blog. It seemed to me that Robert missed major points Zoe and Ari were trying to make. That didn’t really set the stage for a good, broader dialogue to happen. So perhaps the expansion of the dialogue, in retrospect, wasn’t the best timing or situation for having that conversation.
I’m really sorry to hear you’re so upset at TPGA, though I have to ask what you would have done differently if you were Shannon without stifling the conversation. I’m sure that she would appreciate the feedback. Somehow just leaving doesn’t strike me as productive (though of course you have every right to do that).
I’ll keep this short because I’m afraid this is detracting from Rachel’s post and that was never my intention… I just wanted to try to help you understand the impact of what’s transpired.
I am not running away from the issue. I have made my feelings known (before I posted here) and will continue to do so. Shannon is aware.
Rachel made some very good suggestions a few comments up about moderating without stifling.
I think the problem lies in the fact that the Autistic community has been wronged. We are having a great deal of difficulty separating the people blindly fallowing the crowd from the murders who are fraudulently marketing Risperdal and drugs like as a treatment for Autism. We need to show the people blindly fallowing the crowd a frightening reality, that they may be very unwilling to see.
Thank you for your comment, Mary. I think that people act only when they see what’s really going on. T
he harsh realities are there, and nothing gets better without facing them. So I hope that we’ll be successful in bringing these things out into the light.
This was an excellent post, Rachel. I am an SLP working with kids on the autism spectrum. I constantly read and educate myself on blogs such as yours, other self-advocates, and many parents as well. I have contributed to TPGA and can call some of the editors personal friends. I looked forward to The Dialogues and read each of them immediately in the morning when I woke up for the first week. I also read the comments that first week. Your comments *always* stood out to me as those that kept the conversation on track and made others feel comfortable sharing their thoughts and questions. But I was truly dismayed and hugely disappointed in general by the way things unfolded, and by the end of the week I stopped reading comments altogether, and didn’t go back at all after that.
I never felt comfortable commenting, and I have friends who have children with autism who felt the same. I know personally that many voices were silenced by the tone that was so overwhelmingly negative, and watching things unfold the way they did for Emily was very upsetting. I did want to comment here to thank you for this post and for your continual ability to speak your truth without knocking anyone else’s down.
Jordan, thank you so much for your kindness and support. Your last line, especially, means a lot to me. I work very hard to speak my truth and respect other people when they speak theirs, even if I’m in vehement disagreement with them. I’m so glad that quality came through in my comments.
And, just to clarify further, I’m not suggesting that all people dropping out of the conversation are people who aren’t ready to have the conversation. I, too, am very saddened that Rachel and others feel that things have been less than civil for the dialogue. While I don’t see it as uncivil, that certainly doesn’t change the fact that others are hurt.
That said, I do feel that Caitlin has been an *excellent* moderator (I used asterisks this time instead of all-caps…
), even if she’s not officially designated as such. If it weren’t for people like her (heck, I’ll just come out and say it weren’t for her), the dialogue would not be continuing in any sort of productive form right now.
The dialogue is continuing. Are there a smaller number of participants than I’d like to see? Yes, absolutely! Is there more discord and misunderstanding than everyone wants? Certainly. But at least through all this, there’s what appears to be a very real start. Every little bit helps. Kassiane yesterday said she was very pleasantly surprised by all the supportive comments she received about her post. Several parents have said that the dialogue has been extremely insightful and brought issues to the forefront that some didn’t even know existed.
I expect that, when all is said and done, some may come back to and re-read the dialogue and understand these points.
I don’t think I can help you see my (or Rachel’s) point. I’m glad that you have managed to get something out of all this, Jonathan (and I’m not being sarcastic or patronizing, I mean it).
I think I understand your point a little now, even if my perspective was different I thought a lot about this, thank you.
I didn’t see things as Disabled vs. Non-Disabled, but I believe many are getting that from what I understood from your other comment, I probably helped making others feel not wanted, sorry, I don’t think that was the intention of anyone there.
I hope some have the courage to read at least the posts, because they teach in a good way that I think is not agressive.
Yes, I thought the posts were great and provided a lot of food for thought.
Jonathan, I want to clarify that I don’t believe the whole issue comes down to simple incivility. There are much larger problems here that have to do with what I consider a betrayal of the principles of dialogue. Here’s a representative example:
A parent came on a few days back and said she was upset that there was only one nondisabled autism parent represented among the posters. She felt that, in something called the Self-Advocate/Parent Dialogues, that there should have been equal representation among the parties, and that she didn’t feel that people were listening sufficiently to parents in that forum. As soon as I read her comment, I knew what the responses would be, and they went along lines that — by that point — were so predictable that I’m not sure why I even tortured myself reading them. Here’s what she was told:
1) Autistics have been listening to parents all their lives, so she had no right to be upset that, as a parent, she didn’t feel heard or sufficiently represented in that particular forum.
2) The fact that she asked for equal representation only showed what at a privileged position she occupies, and was a misuse of that privilege, because she didn’t understand that the silencing of autistics in the larger world meant that parents in the dialogue forum needed to give autistic people most of the air time.
There are two problems with this response:
1) While autistics have certainly been hearing from parents their whole lives, they hadn’t been hearing from *this particular* parent, or from *the particular parents* she had been hoping to hear from. When we invite individuals to a dialogue forum, we’re communicating to them that we want to hear what they have to say as individuals. We can’t then turn around and say, “We’ve already heard from the members of your group and we’re tired of it, so be quiet and listen to us.” I mean, we can, but then we don’t have the prerequisites for dialogue anymore. And, in my opinion, we’re betraying the trust assumed by inviting people into a dialogue in the first place.
2) While the parent is a member of a privileged group, the fact that she simply wanted to see herself equally represented in a dialogue forum is not an abuse of privilege. I’ve gone to dialogue forums with people in majority groups, and the parties were equally represented. It’s pretty much standard to set it up that way so that everyone concerned feels that they have an equal chance of being heard in the conversation; dialogue assumes an equal ability to be heard. In this case, the commenter wanted parents to be heard as individuals represented equally; she even said that the way parents were running the autism community in the larger world had been anathema to her for a very long time, and that’s why she’d shown up to the forum in the first place. This is *exactly* the sort of person we need to be hearing from and welcoming in. But instead of people giving her the slightest indication that some of her feelings might have been valid and welcome and an opportunity for respectful discussion, she was treated with a great deal of scorn and hostility.
I’ve spent a lot of time in the past two weeks attempting to create space for nondisabled parents to feel safe and be heard. If I saw a parent getting shut down, or treated as though they had ill intent that wasn’t there, or told what to do, I did my best to step in. Do you have any idea what a thankless task that was in an environment in which people were becoming increasingly shrill about the idea that nondisabled parents had no place in the dialogue at all? It was painful and it was exhausting, and it was disheartening to be the only autistic person doing it. It was as though the battle lines had been drawn, and I was crossing over them constantly while people were firing at one another, hoping like hell they weren’t going to start firing at me. It was very stressful, and when all is said and done, it wasn’t all that effective. If it had been, fewer nondisabled parents would have left.
I love moderating and facilitating dialogue, as long as people really want to have dialogue, but the way it ended up, a lot of autistic people just wanted the parents to be quiet and listen. That’s fine in a forum called “Autistic People Speak Out,” in which it’s clear that parents are just there to listen, and I’d love to see a forum like that on TPGA. But it’s not fine when you’ve invited people to have dialogue.
Rachel,
One issue that was never addressed (and was brought up in the comments) was that the intent was for there to be equal (or close to it) representation from both sides… but apparently autistic parents didn’t count as parent advocates in the minds of some people. If you’re a self-advocate, I could see why you might find the dismissal of Melody somewhat offensive. And, as Shannon explained, due to accommodating scheduling needs, three self-advocates went in a row. So maybe by the end there will be balance.
I also want to point out again that I believe the “dialogue” for the series was intended for the posters, not the commenters. Not that commenters aren’t allowed to converse and have a dialogue of their own… and indeed it’s turned into that, and I’m glad for it. But you can’t necessarily expect the same intent of purpose from TPGA to apply to commenters.
Think about all the political news stories out there. Occasionally, two writers may have a dialogue, a back-and-forth of posts discussing a political issue. If you ever read the comments of such things, they inevitably spiral downward the further you go. There’s very little point to even reading them because they are just noisy, angry, and full of shouting. Does that invalidate the things that the authors were saying? Does that interfere with the their dialogue? In my opinion, no. (I’m not saying the the comments at TPGA are a waste of time. If you compared those comments to the comments on political stories, the TPGA are much closer to an actual “dialogue” than you’d see at the political one.)
I’m quite sad that so many people feel left out of the conversation (note that I’d call the comments conversation instead of dialogue) or feel like they are being told to “shut up.” And there have been very unfortunate misunderstandings which you have covered well and have every reason to be upset by. Hopefully, we all learn from those mistakes and find ways to build guidelines that avoid those sorts of things. But we absolutely, positively must not create guidelines for comments that stifle conversation in an attempt to avoid hurting people’s feelings. Some things need to be said and called out. If someone is really bothered by a comment, they should feel comfortable about speaking out and not attacked personally.
I’ve seen remarkably few personal attacks in this dialogue, just a heck of a lot of misunderstanding. If people get upset by being called out on such important things, we need to foster an environment that encourages everyone to stay and keep talking. Almost everything I’ve read indicates that self-advocates aren’t meaning to invalidate the feelings of parents (they’ve said it again and again). I’m not sure why parents keep feeling that way, but if you feel angry or frustrated, you need to keep talking about it if you want to resolve it. But you also need an environment you feel safe commenting in.
And Rachel, I want to thank you for posting this. I really, really enjoy reading what you write and have been following your blog for a long time now. Thanks for sharing so much with us!
Upon reflection, I have a couple more things to add. I don’t mean to drag this on past the point of usefulness, and I know we’re probably already up to 60 comments here, so I’ll attempt to keep this short.
When I wrote “three self-advocates” that probably should have read “two self-advocates” instead, but then I realized that I wasn’t certain that Melody “puts” herself anywhere. I went back to read her post, and she affirms that she doesn’t: “Then there is the idea of having a “parent hat” and an “Autistic hat”. I am not just a parent. I am not just Autistic. I am an Autistic parent. There is no difference.” Does that discount her opinion?
We have a tendency to not listen to people *because* they come from an identified “tribe,” to discount what they say because they have chosen to identify themselves up front. Where does that put people who have *not* identified themselves as anything other than a person interested in this conversation? Where does that put someone like me?
Of course it doesn’t discount Melody’s opinion. No one ever said it did; people just accused the commenter of saying so. I’m an autistic parent, too. If I’d gotten any sense that another autistic parent was being dismissed, believe me, I’d have said so.
Regarding what you’re saying about what happens to people who are just interested in the conversation, but not members of a specific “tribe” — that’s my point exactly. It puts people absolutely nowhere except outside the circle. When people draw battle lines and only see one another as the members of an adversarial force, it’s incredibly unsafe for people who have faith in dialogue to show up and remain there.
One issue that was never addressed (and was brought up in the comments) was that the intent was for there to be equal (or close to it) representation from both sides… but apparently autistic parents didn’t count as parent advocates in the minds of some people.
Jonathan, that is absolutely untrue. No one said that autistic parents didn’t count as parent advocates — no one at all — and no one was dismissing Melody as a parent. That was the accusation launched by other autistics at the parent who made the comment about not seeing herself represented, and it was a complete misinterpretation of her intent. What the person said was that, as a nondisabled parent advocate, she didn’t feel represented. Those are two completely different things. Given that the TPGA forum was presented as place to have dialogue to bridge the gap between nondisabled autism parents and autistic self-advocates, I think the commenter had every right to expect more parity, and I think it was an entirely fair criticism. I even said so in the comments, more than once, and it went right by everyone on their way to attacking the woman’s motives. No one said, “What do you mean?” They just assumed the worst and had at her. There were attacks of that kind all over the comments, over several days. It happened over, and over, and over.
But we absolutely, positively must not create guidelines for comments that stifle conversation in an attempt to avoid hurting people’s feelings. Some things need to be said and called out. If someone is really bothered by a comment, they should feel comfortable about speaking out and not attacked personally.
Yes, some things need to be called out — after careful consideration, and in a way that shows respect for everyone present. Otherwise, people aren’t going to listen, and that’s the whole point of dialogue. I’m not saying we can’t be honest; I’m saying that we have to do it in a way that invites conversation rather than shutting it down. When someone is shouting at me, they may be absolutely 100% right in what they’re saying, but if they want to have a conversation, they’re going to have to keep their voice down and talk to me with respect. That’s just basic. If parents and self-advocates keep shouting at one another, maybe people will hear the words that come out of our mouths, but they won’t be listening, and in a dialogue, listening is everything.
So when a parent comes into a conversation and says something that other people see as irrelevant or frustrating or triggering, it is absolutely not okay for them to pull out “derailing for dummies” and accuse that person of attempting to derail anything. Out in the world, when people do it all the time with the worst of intent, yes. In a dialogue, in which people have shown up because they actually want to converse, accusing them of derailing a conversation as though they’re part of some conspiracy to shut us up is not only wrong but completely unproductive. If the person is derailing things but altogether unconscious of the impact, you call them out on it in a way that doesn’t cast aspersions, doesn’t include derisive laughter, doesn’t include dismissal, and doesn’t make other people afraid to make a mistake. It’s inevitable that parents are going to make all kinds of mistakes; they grew up in a world in the able-bodied perspective rules, and they don’t understand the impact of what they say or do much of the time. If the point here is getting them to understand their impact, then the kinds of things I’ve watched in The Dialogues make that pretty close to impossible. No one is open to understanding when they’re being made the enemy.
So I went back and re-read that comment. (For those interested, it was on Kassiane’s post, not Melody’s). The original comment started out with: “It is a bit amazing to note that we are on Day 7 of this dialogue and as yet, a non-disabled parent of a child with autism has not held the floor. Yet we are the target of the criticism.” To me, that is a charged statement, right out of the gate. I’m not surprised that people got defensive. Why couldn’t this have been phrased with a little more context about the evolution of the Dialogues in mind? Or why couldn’t it have been phrased as an inquiry to Shannon?
I’m not asking you to defend her tone here, nor am I saying a defensive and attacking response was appropriate, but merely pointing out that, when you come out with fists swinging, it’s really hard for so many people not to simply retaliate. I believe that you’ve said as much in other comments here when discussing moderation.
Your point, “Regarding what you’re saying about what happens to people who are just interested in the conversation, but not members of a specific “tribe” — that’s my point exactly. It puts people absolutely nowhere except outside the circle.” So why is it so important to represent those “tribes” if they are, in fact, harmful to inclusion? Why is it so important to draw that line so clearly when setting up the Dialogue?
And not to nitpick here, but they are called The Self-Advocate/Parent Dialogues… and not the Self-Advocate / Non-Disabled Parent Dialogues. And though on an autism site, they are also not called the Autistic Self-Advocate/Parent Dialogues. The original dialogue was one of disability in general, not autism. So, with this in mind, the conversation actually went:
SA (Zoe) – P (Rob) – SA (Ari) – SA (Zoe) – P (Rob)
a break, then:
P (Melody) – SA (Kassiane) – SA (Amanda) – P (Kristina)
That suggests that there is, in fact, plenty of parent advocate (for disabilities) representation. Once the series is done, I expect it will be as balanced of a presentation as physically possible, given the circumstances and the evolution of the Dialogues mid-stream.
Those details are true, but I think it’s important to see them in context: The Dialogues grew out of Shannon’s concern that autistic self-advocates and nondisabled autism parents weren’t communicating; she wrote a beautiful post about it before the Dialogues began. She’s had these concerns for awhile, and they were the impetus for the series. I believe that’s where the expectation of equal representation for nondisabled autism parents came from. Plus, most parents who come to the site are nondisabled autism parents, so I think it’s natural that they would assume more representation.
Rachel (and maybe Shannon, if you’re listening),
Responding here since we’ve hit the nested limit…
If that was truly the intent of this series, forgive me for saying this, but framing that dialogue in the context of Zoe, Rob, and Ari was not (in my opinion) a very effective way to do that, in large part because Rob is not a non-disabled autism parent. I don’t think that was apparent to most people until Rob came out and said that, in fact, he knew very little about autism and that his daughter is not autistic. I do thank TPGA for hosting the much-needed dialogue between the three people, though.
Hi Rachel, I found your voice, and Alicia’s, so powerful during this discussion. Thank you both. I will be reading your work with great attention from now on.
Jamie says above, “Young people cannot become who they need to be without pushing away from their parents and, in the case of young people with disabilities, from the “parent community”. Do their words hurt us at times? Yes. But this is true of all young people. they break away, push back, reject and dismay . . . it’s hard to hear and except. But it’s a natural and welcome part of the development of the advocacy community as well.”
Maybe this is the case. Autistic advocates need to be heard, to have their pain acknowledged, to be recognized as adults and as powerful adults at that. This need feels so primary and so raw right now that other sorts of discussion get overshadowed and are unwelcome.
We can listen, but as you point out, it is not dialogue.
I hope that over time, when both communities feel less threatened, we can come together as partners. Now may not be the time for that. But I hope that we can find ways to support each other’s goals even if we can’t work together right now.
Thank you for the time, patience and care you put into bridge building this week. It was not for naught.
Susan
I’d like to come right out and say if I have offended you, please let me know. If I can explain my thoughts around anything I’ve said, I’ll be happy to. I must admit, I’m having my doubts that anyone noticed my contributions. I don’t try to gear things back on track. I just enjoy teaching things most people have a hard time putting words to.
Melody, you have not offended me at all! I noticed your contributions in the comments and appreciated them. Until people started commenting here, I also had my doubts that anyone had noticed my contributions. So I’m certain that others found what you had to say meaningful, even if they were so weary that they didn’t say so.
In case it’s not clear, I’m not saying that all the autistic people in the room were doing what I talk about in my post — any more than I’m saying that all the parents who showed up were interested in engaging the issues. I’m talking about the situation reaching critical mass and the fallout for people who couldn’t tolerate it.
I noticed and appreciated your thoughts Melody.
Thanks to both of you for that. I was getting worried. I know that a couple of people have responded very positively to what I’ve said, but I couldn’t tell based off the comments here and your post in general if I was just unheard or not. Thanks and e-hugs!
I want to respond to this issue of “Doesn’t Melody count as a parent?”
(And Melody, I know you are in this forum and I apologize for addressing this in the third person. I did read your piece and I loved it. As I said on one of the earlier days, hearing from parents who have autism + understand caregiving for an autistic is amazing and you spoke beautifully.)
Of course Melofy “counts” as a parent. But she has standing in both of the groups which are fighting. While that makes her uniquely qualified to comment on how society treats each of the two different groups (and she did that terrifically, I especially liked where she described the reactions she gets when wearing different hats) it doesn’t put her in a position to comment on what it feels like to be an outsider in a world that you are at the same time so closely tied to.
As I said in my admittedly long-winded post (Rachel, like you, I knew I was going to get creamed which is probably I had difficulty speak succinctly.) I have never felt represented in the wider world about autism. I came to this dialogue hoping against hope that this might be an opportunity to learn not just about why autistics are so angry at parents, but also to talk about ways that some parents want to connect but feel locked out. The real question I wanted to ask was, “Can we listen to each other?” And hard as it was for me to hear in reply, I don’t think we can.
I have tried within my limited ability to put a different story about autism into the world. I wrote a book called Coloring Outside Autism’s Lines last year, which was published, about finding joy and fun while accommodating a child’s autism). What I discovered when talking to reporters and radio people joy + autism in the same sentence was a sense of disbelief. That pisses me off. I am not trying to push my book or brag, I just am explaining: I am not Autism Speaks. In fact, I am not anyone I have ever seen that claims to represent me.
I know the autistic community has heard a lot of garbage from groups claiming to represent parents. But they don’t represent all of us. There are some who feel disenfranchised and want another way. But when we look around for allies, we meet anger from those we had hoped to know. I recognize that I am privileged in seeing multiple groups and being allowed to choose from them to join. But to borrow Groucho, I don’t want any club that will have me as a member.
I was hoping against hope that somewhere in these dialogues the point might have been made that not all parents are the enemy. That the parent community is not a homogenous pack of people either parroting what we’re told to say, or needing to have our eyes opened to the fact that autism does not have to looked at as a curse (and a curse on parents no less). We just don’t know where to go to share that story.
Best,
Susan
Susan, I just realized that you were the commenter who talked about feeling unrepresented as a nondisabled autism parent. (There are so many new names here that I didn’t make the connection until now.) I was really horrified at the accusation that you were saying Melody didn’t count as a parent. For me, that accusation was one of the lowest points of the entire forum.
I’ve said more about this in my response to Jonathan higher in the comments, so I won’t go into it at length here. Suffice it to say that I’m both autistic and a parent, and I’m really sensitive to any kind of dismissal, so if you’d been dissing Melody, I’d have noticed it, and I’d have said something.
“I was hoping against hope that somewhere in these dialogues the point might have been made that not all parents are the enemy.”
From Kassiane’s post: “It is absolutely your job to advocate for your minor child. Please don’t take this as me saying it isn’t — I know my parents are screwed up. I know most of you are not. But please, don’t let your knee-jerk reaction be to assume that all parents are like you. They aren’t. Some are like mine. Please don’t erase that by saying that you know no one like that. Please don’t diminish it by assuming that if I call out a societal problem or a possibly problematic attitude or behavior that I am unable to separate my upbringing from what you are doing for your children. I know the difference — I wouldn’t be engaging at all if I thought most or even many parents were like mine.”
I’m not trying to be a pain here, just trying to understand. How does this not address your concern?
I am not looking for recognition that I have the right to advocate for my child. (If I was waiting for someone to tell me it was OK to do that, I’d be a poor parent indeed.)
I am looking for some indication that when it comes to advocacy parents and autistics can work together. I am not talking about advocating for my child within my own community or only while he is a minor. There are bigger issues and a wider world, and that is the arena where we are truly doing ourselves down by infighting.
Autistics don’t want to be confined to advocating just for themselves: They want systemic change, public awareness, political attention. That stuff paves the way for individual advocacy to be successful.
It sounds like autistics (not just Kassiane) are saying that as a parent, my role is to advocate while my child is a minor and specifically for his needs.
But at the same time, the autistic community rages at the public picture of autism as a “child’s disease.” But pushing me into that box perpetuates the stereotype. I may not know all my son’s future needs now, but I can see down the road enough to know there is trouble ahead. Putting myself out there and fighting for his rights is part of making sure he has a meaningful life as an adult, with or without me.
I am trying to understand the autistic community’s attitude toward my right to advocate outside the IEP room. What I am reading is that while my son is a minor I should advocate locally and specifically. When he is no longer a minor, then I should step back and let him self-advocate if he can. (This even as they tell me the utter horror that self-advocating in hostile circumstances can be.)
I am invested, I am committed, and I am passionate. Am I infantilizing autistics if I want to stand as an ally? And if you decide to tolerate me, do I have to keep opinions to myself because I am not autistic?
There are parents who want to be part of advocacy outside of the (damned) IEP room. It feels like we are being told that it is the place for us. And this baffles me. If parents are being heard too loudly when it comes to child services – and as a result harming adult advocacy efforts – why push us to stay in that space?
I happen to agree that too much money is spent trying to “fix” our children rather than accommodating them and allowing for them to learn differently. This is the result of a powerful swell of parent pressure that insists government help “fix” their kids during “early intervention years” which is an all-important “window of opportunity” (snort).
But let’s for a moment say that you are a parent who doesn’t agree with that. What then?
Again, apologies for speaking too much. I can’t seem to get it out in a few words. Thank you very, very much for asking.
Susan
Susan, on a blog run by a very word-happy person with Asperger’s, you do not have to apologize for speaking too much or for using too many words.
You’re making a number of excellent points here. It speaks to one of the comments that has most stuck in my mind from the past two weeks. In response to a parent, an autistic commenter said, “This is our advocacy movement. Not yours.” I was rather shocked by that, I guess because I come out an experience of the civil rights movement, which included white people as welcomed and necessary members. It wasn’t a matter of having anti-racist allies outside the movement; it was about bringing them in and making them part of the movement. So yes, while I’m committed to disabled people taking the lead in the struggle for our civil and human rights, I find it extremely short-sighted to tell anyone who is doing advocacy work on behalf of disabled people that they don’t belong. To me, the willingness to bring in anyone who cares about social justice to any movement is the reason anything gets accomplished at all.
I think this all goes back to the point I was trying to make in my post. There is no self-advocacy, or parent advocacy, or policy advocacy. It is all just advocacy. That as long as you have the morals and logic and are willing to listen to others, you should be allowed to advocate. In what setting doesn’t matter. For who doesn’t matter.
Parent advocacy is seen as such an evil thing because it’s been used to do evil things. (And in some cases, is still used to do evil things.) But that’s not because of the group advocating.. It’s because of what they’re advocating for. The distinctions need to be dropped. I don’t mind there being parent organizations (and yes please, parent organizations that use ND ideals. because I seriously want a parent organization I can belong to without bending on my morals!), and yes, there needs to be a larger Autistic organization (as much as I love my work for ASAN, it’s just not as big as it really needs to be. plus, there need to be adjustments made for locales and junk). My point is… it’s not about who’s advocating but what they’re advocating for that’s the problem.
Amen, Melody.
I agree with so much that you wrote. I see that you are passionate and straightforward. You bring up points that resonate with something I wondered about.
Jonathan, I’m moving my response to you down here because we’ve reached the limit on nested responses in our exchange.
The original comment started out with: “It is a bit amazing to note that we are on Day 7 of this dialogue and as yet, a non-disabled parent of a child with autism has not held the floor. Yet we are the target of the criticism.” To me, that is a charged statement, right out of the gate. I’m not surprised that people got defensive. Why couldn’t this have been phrased with a little more context about the evolution of the Dialogues in mind? Or why couldn’t it have been phrased as an inquiry to Shannon?
I’m not at all surprised that people got defensive, especially by Day 7, when there had already been so much hurt all around. If I’d been moderating, and the conversation had been relatively productive up to that point, I’d have worked with the commenter to get things said in a way that came out sounding less aggressive — not because it’s not okay to be aggressive sometimes, but because it might not be the most productive thing in that instance. (Of course, I wouldn’t have her or anyone else change the content). But by Day 7, after things had degenerated so badly, no amount of rewriting would have helped. After all, I attempted to restate what the commenter had said, more than once, and people weren’t able to hear it. And that’s an indication that things had already gone very much awry.
But this is a crucial question you’re raising, because it speaks to the difference between what one feels and how one chooses to respond in the face of it. Feeling defensive to a comment that strikes you as aggressive is natural; whether the person intended to be aggressive doesn’t matter when it comes how you feel. But how you respond to that feeling is everything. If you respond with hostility or derision, accusing the person of all kinds of things, you’ve made a choice. So I can be very, very angry at something a person says, and I can make clear that I feel angry, but I can do it in a way that respects the dignity of the other person and doesn’t result in even more hurt. Believe, I can, and under a great deal of provocation. It’s something I’ve worked very hard at, because at one point in my life, I was quite reactive and let every feeling I had come straight out of my mouth. It caused a lot of hurt to people, and the responsibility for that hurt is mine, and mine alone. Yes, those people were saying and doing things that upset me, and yes, I was absolutely right to feel angry, but I had a choice to respond in a different way and I didn’t take it.
Of course, I’m talking about how one engages other people in dialogue. I’m not talking about situations in which people are in danger and have to respond aggressively. And if people feel so unsafe in the Dialogues that they feel they have to respond aggressively, that’s an indication of the very problem I’m talking about, and an argument for a moderated space along mutually agreed-upon guidelines.
Your point, “Regarding what you’re saying about what happens to people who are just interested in the conversation, but not members of a specific “tribe” — that’s my point exactly. It puts people absolutely nowhere except outside the circle.” So why is it so important to represent those “tribes” if they are, in fact, harmful to inclusion? Why is it so important to draw that line so clearly when setting up the Dialogue?
It’s important because that’s the line along which the divide already exists. So when you set up a dialogue to heal that divide, it’s important that people on either side of it be heard equally as members of their respective groups. None of us are responsible for how the lines have been drawn, but we have to start from there. Once people can start talking to one another, those “tribes” aren’t sources of division anymore; they’re just a matter of identity for the people in them. It’s not a bad thing to be a member of a tribe, and there is nothing that says that being a member of a tribe is, in and of itself, a divisive thing. It’s how people treat the members of other tribes that’s important. And yes, autistic people get trampled by other tribes, for sure, every single day. But in a dialogue, we just can’t be taking it out on the people who represent the other party. Just as I’m not responsible for everything my government does, parents who show up in a dialogue aren’t responsible for everything the autism community does.
P.S. Thank you for engaging in this dialogue. I really appreciate it. These are exactly the issues that need to be discussed, and unfortunately, what was happening in the Dialogues didn’t lend itself to this discussion for a lot of people.
Susan,
Thank you so much for sharing your thoughts on this with me. I sincerely appreciate it.
You said: I am invested, I am committed, and I am passionate. Am I infantilizing autistics if I want to stand as an ally? And if you decide to tolerate me, do I have to keep opinions to myself because I am not autistic?
I don’t think anyone in the Dialogue (comments or otherwise) would answer “yes” to those questions. I wish that was apparent, but maybe it’s so apparent to some self-advocates that they feel it doesn’t need to be explicitly said. They couldn’t be more wrong; it’s obvious that it does.
What I’ve felt from many of the self-advocates commenting on the Dialogue (funny, it’s a capital D now…) is a sense that they are trying so very hard to reach out to parent advocates to help them understand their experiences, and from that hope for the same thing that you hope for: working together to make the world a better place for autistic (and disabled) people.
Non-disabled allies are crucially, vitally important because they occupy the platform where people are listening. They have the ears of people who take them seriously. Imagine if someone at my workplace started making fun of someone with a disability. Said person with a disability has far less leverage to change the behavior of the person making fun of him/her than, say, a non-disabled co-worker. The non-disabled co-worker can outright condemn the behavior and nip further escalation of bullying and abusive behavior in the bud. But the point of all that isn’t, “I’m a non-disabled co-worker and you hurt my feelings because you’re making fun of a disabled person.” The point is, “I’m a non-disabled co-worker, and by talking like that you are hurting the person with a disability. I have to call you out for that because it’s not okay and you need to hear it from me because I’ve already earned your respect.”
That’s the point that Zoe was trying to make on Rob’s blog. That’s what started this whole thing. It’s gone in different directions, and there’s been a lot of talking at each other instead of with each other. But that’s the crux of the matter.
I think that, to avoid talking at each other (instead of with each other), this dialogue really requires acknowledgment from the receiving person, acknowledgement and demonstration of that understanding by the receiving person. It’s my impression that that acknowledgement and demonstration was never expressed effectively by the original receiving party (Rob). It was perceived as, “Yeah, yeah, I don’t know a lot about autism (shuffle shuffle)… but let me tell you how I feel about these issues.” I don’t believe Rob intentionally avoided doing this, but it unfortunately set up the Dialogue with the impression that Rob wasn’t listening to Zoe or Ari. Of course, the Twitter conversation really only exacerbated this impression (despite the reality). For awhile, it seemed that many comments by parent advocates were met by self-advocates with, “You’re acknowledging I’m talking but you’re not demonstrating that you understand what I’m saying!” Unfortunately, I believe that led to a whole ton of frustration on the part of both “tribes,” and many people left out of that frustration. It just became a shouting match.
However, acknowledgement and understanding from parent advocates has been happening on some level, even if it’s in the quiet part of the comments (i.e., not the comments with 35+ angry replies). That is why I’m so hopeful about something very positive coming out of this discussion. And I believe Caitlin sees the same glimmers of hope that I do. Of course, I’ll be the first to admit that I’m a sickeningly unbridled optimist, so maybe I need a reality check.
To Rachel’s point about guidelines for having good dialogue, I think that this acknowledgement and demonstration of understanding step is absolutely essential for good dialogue with these “tribes” that we have. (I hate that word, but I’m not sure what else to use here.) If someone doesn’t acknowledge and demonstrate an understanding before launching into their opinion, I think good moderation involves pointing this out and getting said person to take a step back, think this aspect through, and then demonstrate an understanding before talking about their opinions.
And as for, “This is our advocacy movement. Not yours…” I couldn’t agree with you more, Rachel. That’s not helpful rhetoric at this stage of the game… and I believe you did an admirable job attempting to moderate through that. While I see what this person is saying, I believe he’s putting the cart way before the horse in that regard.
I’m very interested to see where this PFLAG-like concept for a group goes. I think rallying around the conception and birth of such a group is a needed first step. I haven’t see any comments yet that object to the formation of such a group. Can we at least start new and have a dialogue around this, without all of baggage of the current Dialogue?
Again, thanks again to both you and Rachel for continuing this discussion. I’ve been trying to wrap my head around the Dialogue for quite some time, and it’s only now starting to make a little more sense.
Hi Jonathan,
I agree with you 100%: for dialogue to be fruitful, people must demonstrate that they understand what the other person is saying before launching into a response. That gives the other person a chance to clarify, along with the confidence and comfort of being understood. Mirroring what someone says is also an excellent way to keep from being reactive; it’s the equivalent of taking a deep breath and stepping back.
All people need to know they’ve been heard and understood. For autistic people, it’s especially important, because so often, people don’t hear from us at all, and don’t pay us much mind when they do. And for parents, it’s equally important, because parents live in a world in which family and friends often don’t get it, in which school districts make a habit of not getting it, and in which the rest of the world complains about what “burdens” their children are on the system.
Perhaps this is part of where the over-reactivity came from in the Dialogues these past two weeks — people wanting desperately to be heard in a world that ignores them, and feeling that other people are still not listening.
And I also wanted to say… I seem to have mastered the use of <em>…</em> tags. I didn’t know that the blog used traditional HTML markup (many don’t because of some of the security risks of doing so). So many sites these days use some form of abbreviated “mark down” language that varied from site to site.
Rachel, I don’t know if there’s a way for you to say something like, “The use of <em> tags are encouraged for emphasis” somewhere near the comment window, but such a note (maybe written in a different way for the less tech savvy) would be extremely helpful and I’m certain would help some people to avoid using all caps for emphasis.
As a “sickeningly unbridled optimist” myself, albeit a grumpy one, I do feel it’s important to note the increasingly positive dialogue happening in the comments on this week’s posts. While the overall number of comments has been fewer, the behind-the-scenes readership hasn’t — because fewer misunderstandings and disconnects are occurring, and are being replaced by more genuinely fruitful conversations. Which tend to have less back-and-forth.
Still imperfect, still important. Thanks again, Rachel.
Shannon, I’m glad to hear that people are still coming to the forum in the same numbers and reading the posts. I thought the posts were all very valuable for getting people to think about the issues in different terms.
Jonathon, I hear what you are saying about that need to be heard and acknowledged, and I too felt how much the autistic community wanted that reaction. That was why I didn’t speak other than to say “great stuff” (and to hint that I felt Robert wasn’t necessarily speaking for all parents) until Day 7. I thought that each autistic poster was speaking powerfully and I wanted to listen. But as the comment section degenerated and the editorial perspectives continued without ever actually being addressed by the other side, I began to feel very frustrated.
If there is anyone in the country who knows parents who have strong and empowered attitudes towards autism, it is the editorial staff at TPGA. Shannon and I have known each other over a period of years through Northern California advocacy circles and while we don’t always agree, our hearts are in the same place on some big stuff. You’re right that I sounded ticked off in the first sentence of my post. I had to stop and think about that when you called it out above. And while I understand that editorially this Dialogue mushroomed from where it began, I also felt that offering Robert as the voice of autism parents was not right. I expect his kind of speech in other places. But this was TPGA! I couldn’t understand why they didn’t reach out to any of a great many parents we know in common who would have offered a different perspective.
So yeah, I was feeling mad, misrepresented. Allowing that to be the first thing I said was a mistake and a petty indulgence. One I take responsibility for. Should I have taken it up with Shannon privately? Perhaps. I did consider it. But the picture of parents had already been painted out publicly, and it said we were either claque or clueless. I let my feelings of rebellion get the better of me.
I want to respond also to this need to be heard, to have personal experiences validated by the “other side.” I heard that need, and also the frustration around the demands of the “self-narrating zoo.” Over time I began to feel these were becoming incongruous. On the one hand, advocates were explaining their anger at being confined to talking about their personal experiences instead of being allowed to talk about advocacy issues. They have been given the clear message that this is what society (especially parent society) wants to hear from them. And then on the heels of that: Until parents truly understand our experience, we cannot move on.
I question whether this need to be heard and understood will ever feel satisfied, or satisfying in the context of a dialogue with autism parents. There will always be those who don’t listen, who refuse to see themselves in the history, or who don’t understand. Autistics don’t have to cure that! And they don’t have to convince the thinking parent community that they matter, because plenty of us believe they matter. As to those who don’t, at some point we’ll need to stop trying to get them on board and just move on.
I am impatient, it is a personal failing. I’d like to build a relationship as allies, advocate for change, craft messages that help to educate, otherwise take things forward. Not to dismiss or deny the importance of the history, but to begin to move past it. The collective impact of the editorial and the comments on parents was “Shut up and listen. You have nothing to say worth hearing.” That sends parents away in a poor frame of mind.
Mostly I want stop shaking each other and saying “You Just Don’t Get It.” It is true, I won’t ever fully get it. But isn’t that partly what autistics want me to understand? Can we agree that while I don’t know what it is to be autistic I still have value to a movement that seeks to hear and recognize and value autistics?
I thought this Dialogue might be a place where it emerged that there are parents who want to be part of a better picture than what is out there with our name on it. TPGA is the only place I know of where such a thing might actually have been said. Not on Day 1 necessarily, but eventually. But by Day 7, it was clear that no parent was going to speak to the points made by the autistic writers or stand up for our interest in having a voice that isn’t derided and met with anger in this community.
I do hear the pain and I am sorry for what you (collectively have been through. You matter so much more than the world has led you to feel.
I continue to hope I matter too. I know that even if we cannot work together, I won’t stop working.
Susan
P.S. I did send this to Shannon before posting to make sure she was OK with it. I don’t want to attack TPGA, which is doing important work. My expectations were my own. TPGA is a forum with an incredibly diverse audience, perhaps the first of its kind. It is a heroic effort.
I do want to very briefly address some of this.
I hope no one thinks I have ever or would ever offer myself up as representing the voice of autism parents. As the parent of a child who is not on the spectrum, I had reservations, which in fairness I did express to Shannon, about getting involved in this discussion before it ever started. I am flattered that Shannon believed otherwise, but in retrospect, I believe I was a poor choice. I should have listened to my instincts, and I didn’t, and I have no one to blame but myself. I was woefully unfamiliar with the culture and the past history of the autistic self-advocacy movement, and I ended up couching my discussion in terms that many found deeply offensive.
I’ve been active in the advocacy community, particularly regarding AAC issues, since my book came out in 2008, and I think I’ve served that particular community pretty well. I will continue to do so for as long as my efforts are wanted. But the autism community is a very different world, and I made a number of serious errors, most of all in trying to encapsulate what I felt I had gleaned from Ari and Zoe rather than answer them point by point. As a writer, that was my most comfortable way to express myself, but it absolutely didn’t work in the context of this dialogue, and again, I have no one to blame but myself.
In looking back, I see that many parents who tried to get involved in the discussion did so almost as clumsily as I did, and I think it is deeply regrettable that so many of them ultimately felt unwelcome and chose not to continue. I don’t think any of them made the ignorant blunders that did, and they certainly didn’t deserve the treatment they got.
Again, I was quite simply a poor choice as one of the original posters in this series, and for personal reasons (and at the request of my family), I’ve kept a low profile for most of the past week. And frankly, the discussion hasn’t suffered much from my absence. But a lot of other people did want to participate, and the loss of their voices is a real shame.
Hi Robert,
Thank you so much for commenting and for speaking to these issues. I do not think that you were the only one who blundered here. There was a quite a lot of that to go around, on all sides, which is largely why so many people found the discussions so unproductive. I appreciate your owning your part, though; if more people were able to do that, I think we might begin to find some healing here.
As I was reading your comments, so much went through my mind about the particulars of what happened and why. And then I realized that I’m starting to get so caught up in the details that I can’t see what’s in front of me. What pained me so terribly about watching the disagreements is how little kindness there was in them. When people were responding to the posts themselves, thanking the posters and acknowledging their appreciation, there was kindness expressed; but when people started getting into disagreement, it went away almost completely and was replaced with tremendous amounts of anger and pain.
Tonight, after almost two weeks of processing all this, I’m realizing that what I need most — and what I hope for most — in my life is to give and receive kindness. It’s very easy to extend when things are good and everyone is in agreement. It’s much more difficult in the midst of pain and conflict, but that’s precisely when it’s most needed. So as I watched autistics and parents rip into one another with so much pain and anger, all I wanted to see was some kindness in the midst of it. I’m crying as I write this. I don’t know what else to say.
Oh, Rachel…… when you are at your most tender (which seems to me to be most of the time), then tears of part of my experience of reading your words. Like you, unkindness cuts me to the bone and I yearn for kindness to rise again. Once, in the midst of a work conflict, I consulted with my daughter and her input was, “Rarely, Mom, will everyone swivel around and follow you to a peaceful destination.” Maybe that “true,” but I’ll never stop yearning for peace and kindness and I suspect you never will either.
You’ve got that right, Jan. It’s so good to hear that you feel the same way.
Robert, while I will agree with you that you were put into a position out of your element, I honestly don’t think it really mattered it was.
It seems to me that, in this “dialogue”, the self-advocates could say no wrong, while you could say no right.
For example, in the latest post… she loves Melody’s post, which says: “So how can each side help the other? Parents, when you are called on to advocate publicly, privately, in your communities or in your own home, invoke that self-advocate you know. … Self-advocates, be willing to stand with the parents. They are our only hope to be heard.”
But then takes you to task for the same sort of statement: “Then, when I read Robert’s post from Day Five, it at first strikes me as another “we have to present a united front or no one will get anywhere” speech. I have heard this sort of speech from people in positions of power who wield political power and hold the purse strings to various funding sources.”
This is why it was never a dialogue to begin with. The way I read it, a non-disabled parent can say the exact same thing that a self-advocate says and one will be ripped apart while the other is praised.
And it’s a real shame too because that sort of double standard takes away from the over-all message since it means alienating all non-disabled parents to make it.
Rachel, I’m jumping in way late here because I’ve been overwhelmed with keeping up over at TPGTA (on top of suddenly being slammed with work). On the whole, I actually thought the dialogues were ultimately productive and not as painful as they could’ve been, but…completely overwhelming, and if I can say that as a hardened debater, I can only imagine what they were like for some others. My head is ringing a little bit.
I appreciated everything you wrote over there, Rachel–while there was a lot of pain to be expressed, and I did my share of expressing it, I just felt like there were so many times when an explanation to somebody of the problems with what they were saying would’ve gone soooo much further than an accusation of deliberate derailing. I was particularly upset by the parent who said that she would accept personal insults/abuse from self-advocates if that’s what it took…because I know we can do better than that, and because that approach can only really make more people too afraid of being attacked over politics they know nothing about to decide they want to be our allies.
But considering the length of time that these same arguments have been going on between parents and self-advocates, sometimes in much more painful ways, I’m actually a little impressed with what got talked out in 9 days, and that even a few people were able to say at some point, “okay, I never heard that concept before and I’ll think about it.”
I just felt like there were so many times when an explanation to somebody of the problems with what they were saying would’ve gone soooo much further than an accusation of deliberate derailing.
I agree completely. This is precisely what I’m talking about when I make a distinction between impact and intent. There’s a huge difference between “When you say xyz, it has the impact of moving the focus off the issue I’m raising, even if you don’t intend to do that” and “When you say xyz, you’re intending to derail the conversation away from the issue I’m raising.” Even if the person is intentionally attempting to derail the discussion, making a statement of impact does no harm, as people are always free to disengage when something is getting derailed; in fact, the statement encourages people on the other side of the “line” to speak up in support. But if you accuse someone of an intention that may not be there, many people are not going to support you in bringing the conversation back on point because they feel that, by doing so, they’re complicit in the accusation. And then you’re derailed the discussion yourself, however unintentionally.
Should we have to explain these things? In a perfect world, no. Everyone would just get it. But that’s not the world we have here and, if we’re going to get anywhere, we have to talk about the impact of these things on us with people who show up to try and understand.
Robert, I said this privately but I’d like to say it publicly: Thank you for stepping into the minefield as you did.
I made the assumption that you knew what you were getting into and now I realize that you probably couldn’t have known.
This past week I reached out to families from different special needs communities to try and understand if this divide (and its hostility) was unique to autism. In some aspects it does seem to be specific to ASD, particularly in its intensity.
You took a lot of knocks and you did it to get people talking. It took courage.
Susan, I think that much of the intensity derives from the fact that people with autism are much more excluded from decision-making positions in autism organizations than people with other disabilities are in their respective communities. With visible disabilities, particularly, you see disabled and nondisabled people sharing positions within organizations dedicated to treatment and policy-making. In the autism world, the only organization like that I can think of offhand is the Asperger’s Association of New England.
In addition, there is the issue of more services being available for people with visible disabilities than for people without, and there is greater understanding that people with visible disabilities need accommodations. So, for example, when the Multiple Sclerosis Society holds a conference, it’s in a space that is accessible to people who use wheelchairs. When there is an autism conference, however, the space is not accessible to people with auditory and other sensory processing issues, or with difficulties keeping up with verbal conversation. For instance, I could not show up to something like IMFAR because the environment would get aversive in about 5 minutes. This kind of exclusion makes it difficult to even get in the door and lobby for greater representation within organizations. There are very few attempts to meet us halfway — or even a tenth of the way.
Plus, on the parent side, there is quite a bit of hysteria whipped up about “the autism epidemic,” and the necessity of getting your child every last expensive therapy yesterday, and the Unfairness Of It All — as though autistic people haven’t been here for generations. So that adds to the level of intensity. Autism is the monster du jour. In America, at least, we’re always looking for monsters; in 10 years, I have no doubt, it will be the turn of some other beleaguered group.
So I understand what’s behind the anger, on both sides. But, of course, anger is one thing, and treating people badly is another.
[...] about the Dialogue on the Thinking Person’s Guide to Autism and the reactions like this one A Protest March is Not a Dialogue from the wonderful blog Journeys with Autism and I remembered that quote, I noticed this is one of [...]
Commenting again, sorry, I just wanted to thank you Rachel for this post, it made me realize many things, I have been thinking a lot about it, I’m sorry that you and others were hurt by this and sorry about being rude and hurtful there.
Alicia don’t apologise, you have lent much to discussions both here and at TPGTA. And personally, you bought me back into this ‘conversation’ when I was close to walking away. I hope Rachel won’t mind me mentioning here that I have finally blogged about some of my thinking since Kristina’s post today. I couldnt do it at TPGTA as it required more thought and consideration than I can do in a comment. Yourself and Rachel are working hard at this, and I hope you realise how I and Im sure many other people appreciate it.
Susan,
I’m so glad that you took the time to explain yourself and your feelings. Putting your statement about non-disabled parent representation into that context now makes so much more sense to me. I think most of us, when we’re angry and frustrated, have a hard time putting our best feet forward. I’ve definitely been guilty of angrily-phrased wording in the past. I’ve had to live with those decisions sometimes, but I never regret making them. I don’t live with regrets. I believe that we make the choices that we do at any given time for a reason.
And, in fact, I’ve learned that I was wrong to suggest that most people who bowed out of the conversation weren’t ready to have it. While there may have been some, I think your reasons for staying on the sidelines speak for most parents who felt shoved away from the Dialogue. I realize now that my insinuation about unpreparedness was dismissive, and I apologize.
It’s hard to realize in such a passionate debate that, when something is not said, it doesn’t mean that what is said is exclusive. For instance, when Kassiane said, “It is absolutely your job to advocate for your minor child. Please don’t take this as me saying it isn’t…” I think you took that to mean it was your exclusive role as autism advocate. “It sounds like autistics (not just Kassiane) are saying that as a parent, my role is to advocate while my child is a minor and specifically for his needs.” That should be true for any parent, whether their child is disabled or not. Kassiane (or even Shaun, I’ll dare to say) wasn’t implying by any means that, as a person, you’re not allowed to advocate for or advance the cause of civil rights for all autistic people. Indeed, you’re probably a fantastic ally already.
Mostly I want stop shaking each other and saying “You Just Don’t Get It.” It is true, I won’t ever fully get it. But isn’t that partly what autistics want me to understand? Can we agree that while I don’t know what it is to be autistic I still have value to a movement that seeks to hear and recognize and value autistics?
Wow, Sarah! This is a really powerful statement that needs to be heard elsewhere. They are your words, so I wouldn’t repeat them without your consent… but I’d encourage you to repeat them, and, if not in this Dialogue, a future one. I think that there are advocates that are part of this conversation that don’t fully understand why so many parents backed away, and this type of statement may help further an understanding.
Thanks again for engaging in a conversation with me about this. I feel incredibly enlightened!
Please note: I have edited a few of the comments on this post for tone, and to move some statements away from “These are the facts of what happened” to “This is how I see what happened.” I did not change content. I made the edits in the interest of keeping the conversation on track, and so that we can talk about the way we see things, rather than arguing over whose assessment is correct.
I have not marked out which comments I’ve edited; I feel that if I did so, it might appear that the people who wrote them had said Something Really Awful, and no one did. Given the topic of conversation, and given that most of us are feeling pretty battle-weary after the past two weeks, I am erring on the side of caution. I do not in any way wish to stifle discussion; in fact, my goal is to keep it on track so that everyone can feel safe participating.
For those whose comments I’ve edited, if you are unhappy with how I’ve gone about it, please let me know, as I’m certainly open to re-editing. If this were a moderated discussion, with all comments being held in moderation before appearing, I would have talked over possible edits before making them; but since I don’t know whether people have the time to go through that process with me, I didn’t want to hold back comments and create a delay in anyone being heard, since so many people feel that they were not heard in the Dialogues.
I’m sorry if any of my comments were hurtful to anyone reading them. I want to try to do better, but actually wish I had commented less. I agree with this statement you made, Rachel:
“Most people do not want to deal with the stuff that happened on TPGA these past two weeks, and it doesn’t mean that they don’t care about autistic people and our human rights.”
It was painful for me on a number of levels, but mostly because of my own way of approaching things. Thanks for writing there and here.
Thank you for all of your efforts, Dixie, even the ones that you feel fell short. Everyone involved in the Dialogues made an effort, and I want to acknowledge that flat out. The problem, for me, is that the effort fell so far short of the hoped-for results. I’m hoping that we can debrief what happened so that all the energy that people put into these things has the effect of creating greater understanding rather than adding to already very deep divisions.
I didn’t even know about the deep divisions, Rachel. It has been a learning experience and that’s a good thing. I appreciate very much your viewpoints and how you have shared them. Reading the discussions at TPGA has definitely helped me to listen to my own son in a different way. So I see a positive result already.
Oh, thank you, Jonathon. Unbelievably.
Susan
[Site owner's note on this comment, which inadvertently ended up out of context: This comment is in reference to the comment thread on TPGA regarding the impact of the statement "We'll try anything to help you." Amanda noted in her post that when her parents said that to her, it caused her feel as though she were "a natural disaster." A parent observed that her own interpretation of that statement was that Amanda's parents loved her and would "move mountains" for her. I personally did not read the parent's comment as invalidating Amanda's feelings -- I thought the parent was simply saying how the statement appeared to her -- but others disagreed.]
I felt uncomfortable when I saw three people correcting her at once, and I went to her blog and apologized. The reason I didn’t say anything in the thread itself was because normally I’d probably be really grateful that they said what they did, and especially given that two of them were non-disabled parents I didn’t want them to remember this as an instance where they tried to support a disabled person and the disabled person told them off for it. Given that the dialogue threads have gotten so much less parent-centered than most threads on the Internet in parent spaces, I didn’t think they needed to be so blunt and I didn’t think they all needed to run to correct her. If they hadn’t said anything, I might not have even said anything at all either.
But in most spaces I would think something needed to be said. Not because she wasn’t trying to say something kind–but because intent isn’t always the most important thing and that’s exactly what my post was about.
I’ve had parents comment on super personal posts on my blog about supercrippery and SI and stuff, saying things like, “I’m sure your parents did their best and loved you more than life itself!!” They always seem to think it’s going to make me feel good, but it just makes me feel like they’re trying to give me a grade on my own feelings.
I would never write a blog post that was really hateful about my parents, not because they read my blog but because it just doesn’t feel right to do that. I try to be mellow and somewhat vague. But it changed my life when I was able to realize that some things my parents had done were wrong and I didn’t have to feel those things were okay just because they love me. So when I write about something being wrong, and someone comments and goes, “Your parents really loved you, if I was them I’d have said the same thing and meant that I really loved you,” I’m not necessarily mad, but I do have a kind of “…?” reaction.
I think once one person had responded to that comment, those other two people shouldn’t have responded. It wasn’t a big deal and it didn’t need to be a dogpile. But to be honest I was kind of relieved that other people had a “…?” reaction.
Amanda, I think it’s awesome that you went to her blog and apologized, even though you were not the person correcting her. It’s an acknowledgment of her feelings and the possible impact of the responses; that’s just what I wish there had been more of in the series.
I completely agree with you that intent isn’t always the most important thing; it’s often the impact that matters most. And I don’t particularly mind that people responded to what the parent had said. I just wish it could have been less of an attempt to correct (which assumes that the commenter had done something wrong) and more of an attempt to clarify what was behind her statement. So, I think it would have been more productive to have asked a question along the lines of: “I just want to clarify: You’re not saying that Amanda’s perspective isn’t equally valid, are you? And you understand that words don’t always have the intended impact, right?” Or some such. That would have been an attempt to find some common ground.
I know there are spaces in which people attempt to erase our experience of impact by talking about intent (and sometimes, when they do, they make assumptions about intent they have no way of validating), but I didn’t read that particular comment that way. I just read it as a parent wanting to share a parent’s perspective. She might have phrased it better — that is, she might have said, “I think your parents meant that they would have moved mountains for you, but I understand why it caused you to feel as you did.” Of course, I may be reading too much into her comment, but given that her tone was very friendly and that she seemed supportive, I think it’s as good an interpretation as any.
My “…?” reaction came from the fact that I used what my parents said as an example of something parents and professionals thought would be encouraging, but wasn’t. Her comment was basically a restatement of what I said and that’s why it reminded me of situations where “compassion” and “perspective-taking” is used to stand in for something else. I don’t think she had any ill will though, she’s really nice.
I totally understand your point. I’ve had the same “…?” reaction when I’ve talked about some of the things that my parents did and gotten the response of, “Yes, but I’m sure they really loved you.” (“…?”) Of course, whether they felt love for me or not wasn’t the point; the point was how what they had done affected my sense of my self and my life.
In the case of the parent’s comment to you, you’re absolutely right: it was an example of just what you were talking about in your post. I understood that when I read it. But by that point, I was bracing for impact, and was upset at the nature of the responses, which ran the gamut from judgmental to hostile. I’m concerned that those sorts of responses aren’t going to help change hearts and minds. There were much better ways to address the question, I think.
I followed TPGA for a few weeks before the ‘dialogues’ started. I really had just joined the autism blogosphere, and would add or follow any site that I felt had merit (whether it was humorous, venting, informative. . . )
So as someone whose sole experience with autism was “Rainman” and my own daughter (age 5). . . here is the POSITIVE that I took from the dialogues.
1) Apart from all the stabby little back and forths. . . I was exposed to a lot of people who cared deeply about helping other people in the autism community. Whether that meant helping adults with autism, children with autism, parents with autism, parents with autism raising children with autism, or just parents raising children with autism (I know that was really drawn out, but there seems like so many lines of “battle” i wanted to mention the parties I observed). I think it’s very hard for any party who has an emotional stake in the issue to be un-emotional and detached at perceived slights. Very hard. But I think the positive is. . . they all clearly care VERY much and all want to help other people (and themselves). All good.
2. I read some fantastically written posts from all the parties in question. In almost every case someone said something that made me think. I overlooked the stabbiness to the best of my ability and read the content, and in almost all cases I found an author whose content I’d be interested in following. As someone on the outskirts of all of this. . . just getting my figurative feet wet. . . it was a gold mine of sites to investigate.
3. I had some of my preconceived notions about the adult autism community turned on their ears. Let me confess something that makes me feel a little . . . small-minded now. When I first read Zoe’s post, for example, despite inwardly acknowledging how masterfully written I felt the post was, i poo-pooed some of its content because it wasn’t a point of view I’d ever been exposed to and so I immediately questioned it (again, inwardly. . . frankly, the comments (like this one)got too long, and since I was reading at work, I only ever read the posts). It wasn’t something I really thought was an issue. Abled people disregard the viewpoints of disabled people??? Preposterous! I will disregard that viewpoint immediately! Which, in hindsight is tragically hilarious, since it proved her point, but at the time was very innocent and naive and . . . yes, biased, ablist, and ignorant. Since her post I see it EVERYWHERE. I NEVER saw it before. I was so busy in MY little corner of the autism community, worried about MY issues and MY struggles. . . it’s nothing that even troubled my mind. It troubles my mind now.
There are probably other positives I took from the dialogues; links to informational sites, tidbits of which I wasn’t aware. I’ve seen a lot of negative about the dialogues since their conclusion, and I share a lot of negative feelings about it all. In the end I was praying for them to just die. . . BUT. . . I did take a lot of positive from them. And I hope others did too.
Hi Jim,
I loved your comment, particularly the irony of discounting the statement that typical people dismiss the views of disabled people! Yup. Been there, done that, before I realized what it meant to be disabled. Like you, I found that once my eyes got opened to the problem, I began to see it around me in a number of different ways.
Rachel,
I only stopped by one day after Shannon e-mailed me about it and I notice the same things you mentioned in your blog, so I left without commenting. We are dealing with other issues at my house right now that are a result of bullying rather than autism so my focus is elsewhere at the moment. I still hope at some point the autism community will actually become a community because otherwise I do not see how either side is going to win. It seems to me that coming from a place of anger only helps if you can actually contain your anger long enough to get others to listen.
It seems to me that coming from a place of anger only helps if you can actually contain your anger long enough to get others to listen.
I agree completely.
I appreciate this post very much.I read all the posts and many of the comments in the dialogues. I guess I’m glad the dialogue was started. I was surprised to hear it said that non disabled parents don’t want to hear what disabled people have to say. I spend the better part of my life trying specifically to help my son communicate. The minute he becomes able to advocate for himself is the day I gratefully and cheerfully hand over the job to him. Maybe I’ll even take a vacation. Personally, I just don’t have the energy to listen to the kind of vituperation I heard, mainly from self advocates, while giving everything I have to raising a nonverbal child with a severe sleep disorder and painful gi problems. I felt kicked in the stomach, I won’t read anything like these dialogues again for a long time, maybe ever. So, yes, I was listening but now I’m not anymore. But I do appreciate this post very much,
Carla,
I understand how you feel, but I would suggest finding self-advocate voices you can hear, who will discuss with respect (like Rachel). I’ve learned a lot from certain self-advocates, and that knowledge is invaluable.
Don’t let the voices of the loud and the raucous steal away the voices of those who truly want to engage in dialogue.
Carla,
I agree with Stephanie. Rachel has been an asset to my family, as have others. The key is to learn to avoid the negative conversations, but to listen to those that offer positive advice. There are people who share information in a positive way.
I also think it is too easy to get “overheated” when we feel we are being attacked in some way and there is no way to know everyone’s “trigger” words. I try to see the pain behind the anger and to realize that the anger may seem like it is directed at me, but in fact it is probably more about years of being misunderstood and even mistreated by people in their lives. That does not mean I have to stay for abuse, but I do try to take it less personally.
Carla,
I’m sorry you had such a painful experience with the dialogues. Please feel free to hang out here. I have a safe space policy for autistic and non-autistics, and I don’t let people have at each other. Passionate disagreement? Yes. Incivility? No. The only person I’ve ever let be nasty around here in three years was someone whose work I’d critiqued; I put up with a certain amount of hostility from her — directed solely at me — because I hoped that once she got her feelings of upset out, we might have a conversation. It didn’t happen, and I now block her posts. She didn’t get hostile with anyone else, though, and I would not have let her if she’d tried.
I think what you’re saying also applies to politics. I am put off by the shrillness of the demonstrators of both the right and the left. They may have good points, but wisdom doesn’t come in bumper-sticker sized soundbites. It comes through patience and understanding. But then again, what do I know- I lack empathy.
Yes, and you obviously have difficulty understanding the necessity of perspective taking, too.