When apples talk to oranges about steak

I’m sure you’re aware by now of the dialogue going on over at The Thinking Person’s Guide to Autism, and if not… it’s probably a good time to give it a once over. Keep in mind that there are some very long posts and, depending on when you read this, more coming soon… make sure you set aside some time before popping over.

I’ve been biting my tongue through this “dialogue” for a variety of reasons. If you don’t want to go into it with any preconceived notions from yours truly, go there now before reading my post.

How this all started

Let’s just be clear on where this all originated. The “non-disabled parent” wrote a post (that you can read here) about an imaginary parent going to a movie that made rude remarks about Down Syndrome and used the R word and so forth… he imagined how that parent would feel if that parent had a child with Down Syndrome and had to hear this in the movie and all the rest of the audience laughing at it.

In response, the “disabled adult” (autistic) took great offense (you can read it here) to this in that he can’t possibly know what it’s like to be disabled and has no right to be so offended.

Obviously this is a very short summary and I’m paraphrasing, so please feel free to read those two posts to understand exactly what transpired.

But to reiterate… there is now a “discussion” about what parents can and can’t understand, can and can’t discuss and who the real “advocates” are… based on a parent writing about how another (imaginary) parent might have felt.

He didn’t imagine himself being a child with Down Syndrome… he wrote about how a fellow parent might feel.

Apple, meet orange… begin discussion about steak.

Where does this discussion lead?

Hopefully to a good place, hopefully some really good mutual understanding and maybe… if we’re really lucky, even teamwork toward the future will come of this.

However, there’s always different people who find different meanings from all things and therefore, there may also be some much more… well, I would call them “less positive” possible outcomes.

As one person linked to the discussions, I replied to their link saying that I’m biting my tongue.

A woman replied to me, this is what she wrote:

Me: Autistic parent of an autistic child
I’ll comment on this tomorrow

Person without a disability
Why can’t you just come out and say it?

I did not reply to her, I once again bit my tongue because I did not see any possible good outcome from a discussion that begins in that tone.

Still, I really wanted to ask… Is this how we are to address each other from here on out? Is this truly what it’s coming to? Are we, two groups who are fighting the labels that people place on us, going to now refer to each other using labels?

What’s better is… this woman has no idea if I have Autism or not. This was a completely presumptuous reply based on my “biting my tongue” comment.

Is this truly the road we’re going to go down? Is this going to be a benefit to anyone?

Communities?

Adding to the further separation and division, adding to the need to be labeling people in the effort to come together and abolish labels… we now have the Autism Community, Autistic Community, Disability Community and Non-Disability Community… and those who feel that some people belong in multiple communities while others don’t belong in any communities at all.

What does this all mean?

As a group, we’re asking society for acceptance of those that are different… yet we can’t even accept the differences in each other.

We fumble over ourselves declaring superiority, inferiority, privilege, rights, responsiblities and more… in an effort to separate and divide ourselves, to judge one another, label each other and “feel about” each other… all the while telling outside observers to simply accept the differences within us all: gender, race, income, special needs, etc.

You might as well get money management advice from a random homeless person.

Steak

The meat of the discussion, which everyone is discussing but few can seem to agree on, is that we need to listen to each other, talk to each other and work together.

There’s an old saying… “Believe in yourself and others will believe in you too“. In this case, we have to accept each other so that others will accept us as well.

And by us, I don’t mean “non-disabled parents”, I don’t mean “disabled adults”… I mean us. All of us. Advocates. People. Human beings.

Telling each other to shut up or to speak up or what to say or what not say is not the best message to send to the world, it’s not the lesson we wish of others to learn, it’s not the example we need to set.

We all have a vision of how best to educate the world, we all have a vision of how everything would work the best… we all have our own visions. That’s part of what makes us all unique. Those visions all come from having a different life, different experience, different education, different soul…

So long as our visions create conflict, none of them will ever come to life. And it won’t be society’s fault. It will be our own.

Apples and Oranges are different, but they’re both good for the world. They both grow, reproduce, respond well to proper caring and nurturing… and at the end of the day, they’re both fruits.

In fact, maybe they’re not so different after all.

I really hope for the best in these discussions so that we can accept each others differences, rejoice in our commonalities and find a way to work together in educating others how to do the same.

About Stuart Duncan

My name is Stuart Duncan, creator of http://www.stuartduncan.name. My oldest son (Cameron) has Autism while my younger son (Tyler) does not. I am a work from home web developer with a background in radio. I do my very best to stay educated and do what ever is necessary to ensure my children have the tools they need to thrive. I share my stories and experiences in an effort to further grow and strengthen the online Autism community and to promote Autism Understanding and Acceptance.

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33 Responses to When apples talk to oranges about steak

  1. Sarah September 26, 2011 at 2:11 pm #

    Dude, I love you. Seriously,I have been thinking/feeling EXACTLY this from the beginning. I could not for the life of me figure out WHY Autistic Self Advocates were being pitted (yes, that’s what they did) against a parent advocate of a disabled, NON AUTISTIC child… and somehow expected to come up with a balanced discussion.

    Thank you for the apples/oranges/steak analogy, it’s exaclty what this is – nice to know I’m not the only one who thinks so!

  2. JC Mitchell September 26, 2011 at 2:16 pm #

    I like your metaphor of the fruit talking about steak. I do believe there is something to having these discussions more often on-line rather than in person that leads us away from the steak. I am guilty of coming across poorly or worse as the final word, even if that is truly not my intention. It sometimes even gets worse when we are writing to dialogue but comes across as an attack for it is not caught as quick. I try to assume we are all on the same side and honestly that works well if others hang in there and/or do the same getting to the steak. I agree that we need to listen to everyone and even if we disagree I highly suggest specifically trying to write the others argument out so they are at least aware you are aware (hope that makes sense) for a verbal conversation has tone that some of us depend on for context. I can not emphasized enough the power of “I” statements for we are in charge of our own experiences and interpretations.

  3. mdusoe September 26, 2011 at 2:16 pm #

    We also need to remember that what we say now will be available for our children to find later. The internet has taken away the “do as I say, not as I do” mentality, since “what I do (did)” can no longer be hidden.

    Stuart, your children will be proud to find this, and your other articles like it.

    Hopefully, the author of the comment “Why can’t you just come out and say it?” will be able to show her children long term growth, that starts right here.

  4. Shannon September 27, 2011 at 1:47 am #

    I’m going to be frank, Stuart, because you are coming perilously close to the ableist version of mansplaining. If you really are interested in a better world for your son, then you’ll stop pontificating, and start listening to the very real concerns of autistic advocates — who don’t have the privilege of asking for everyone to please get along as their concerns and needs are constantly dismissed by well-meaning posts like this one.

    As Rob acknowledged in the update to his original post, he could have had an inclusive instead of a defensive reaction to Zoe’s post. That means he could have tried to understand Zoe’s original reaction, and acknowledged that he hadn’t considered her perspective or how his post would sound to someone who actually experiences discrimination because of disability.

    As Rob demonstrated, it isn’t easy to take such criticism gracefully. But, again, if you’re truly interested in learning how to make a difference for people like your son, people with disabilities including autism, then you’d better start listening to that community’s advocates, even if what they say isn’t easy to hear.

    That means doing the hard work of participating in the somewhat thorny but very necessary discussions you are criticizing from afar, asking honest questions and making mistakes, and legitimately trying to work towards change even though you may not be applauded for it as you have been for “biting your tongue” here, and on Autisable.

    It can be nasty and challenging and thankless to strive for social justice. But it’s worth it, and it’s possible — the Dialogues are riddled with Eureka moments, not just the conflict and detente you’ve focused on here.

    I am being frank with you because I believe we both want a society that actually accepts/supports our children now, and the autistic advocates they may very well become. Thank you for listening.

  5. Sarah September 27, 2011 at 3:57 am #

    Shannon –

    I have been biting my tongue as well, and NOT because I am an “ableist”, the neat little term you and the self-advocates are slinging like rotten tomato at those of us who are not disabled, and wrongly so.

    Stuart has pointed out VERY well, the absurdity of what you’ve done over on TPGA. Guess what? Just because one of the advocates SAYS something? Doesn’t make them right. The way you are behaving here suggests that they are always right and everyone else can suck it. There have been some good posts, but mostly a great deal of “us” vs “them”. How can you possibly think that what you were doing made any sense at all and wasn’t just going to turn in to a big blood bath?? Which is EXACTLY what happened, with very little discouragement from you, or any of the other editors. You should be ashamed of what you did to Robert. Regardless of whether or not you agree with how he decided to write about his thoughts on the movie? He didn’t deserve this vilification that you enabled. I know for a fact that you assured him when he had misgivings, that you wouldn’t let this turn in to a RRH bashing session. Very sadly, and shockingly, that’s exactly what you allowed to happen. You turned TPGA in to AoA, just on a different subject and it’s sad. It was one of the few places left on the internet I could go to get away from the angry mob – of which there are many, about everything apparently. But that is gone now. You have self-advocates in the comment threads referring to parents as though we shouldn’t even BE coming to TPGA, like we don’t have any right to be there in the first place… “when THEY come here, THEY… ” they being parents of autistic children. Funny, I thought TPGA was created BY parents, FOR parents. Wow, just wow. Such a pack mentality that you have fostered it’s unbelievable. There are many of us who feel this way. But no one can say anything – you’ve even come here, to Stuart’s OWN blog to chastise him because he doesn’t agree with what’s happening at TPGA. Really Shannon? Why don’t you try to aim a little of that “learning to take criticism more gracefully” speech at yourself and your fellow editors. Your intent with this whole thing may have come from a good place, but your execution was misguided at best, unbalanced and more divisive at its worst.

    I know what you were trying to do. You just did it badly. Plain and simple.

    Stuart – I’ll understand if you don’t want to keep this, but I’m done with the self-righteousness of everyone over there.

  6. Stuart Duncan September 27, 2011 at 8:59 am #

    Shannon, thanks for the comment.

    You mention that I need to start listening and also that I am posting from afar, here and on Autisable. Here’s the thing, the post you’re reading on Autisable is on this site, dated August 14th. I wrote it over a month before you started the dialogue on your site. You can verify here: http://www.stuartduncan.name/autism/when-autistics-write-about-autism/

    Autisable syndicates my blog and just now put it up. Amazing how it’s so relevant now though, isn’t it?

    What’s more, if you read the comments of that post here on my blog, you’ll see that I was applauded here too.. by people with Autism!! They not only support that post but LOVE it. In fact, some of those people are the ones commenting at TGPA during the dialogue. Actually, the most adamant person is Kassiane, the person who has the honour of being the guest poster on your blog today! She loved what I said.

    Allow me to be frank with you as well, if you please.

    This post of mine, while phrased differently, essentially says the same thing as Melody did here: http://thinkingautismguide.blogspot.com/2011/09/self-advocateparent-dialogues-day-six.html

    Also, another autistic person wrote about this “dysfunctional community”, a commentary on your dialogue here: http://theautisticme.blogspot.com/2011/09/peek-inside-our-dysfunctional-community.html#comments

    Here’s a third autistic, not necessarily asking us to work together but saying many things along the same lines here: http://autisticspeaks.wordpress.com/2011/09/27/everybody-has-2-cents/

    What gets me is that you were not frank with them. Is it because they are self-advocates and I am not? They all said the same thing I did. In fact, C. S. Wyatt, an autistic, was much more harsh in his criticism of the dialogue than I was. Why are you not over there asking him why he is being so dismissive, posting from afar or pontificating?

    I think, and this is just my opinion, that what really has you upset is that this isn’t the first time you’ve heard of a parent biting their tongue. This isn’t the first time that you’ve heard about parents not wanting to get involved.

    I know you never would have imagined this would happen, I don’t think anyone possibly could have, but the very “shut up” and “shut down” attitude that self-advocates are trying to educate us all about is the exact thing that is happening right in your very dialogue… only it’s not the self-advocates being shut down, it’s the parents.

    A LOT of parents feel that Robert walked into a “let’s make an example out of him” trap where it didn’t matter what he said, didn’t say, felt or didn’t feel… he was made to be wrong no matter what. And actually, parents did support him… by email, comments on his blog… posts on their own blogs. But not on TGPA.

    Why? They were afraid the same would happen to them.

    I’m not saying that was your intention, obviously it was not. It is not even the intention of the self-advocates. I’m just saying, that’s how many parents felt. Right or wrong, true or false… they were scared to speak up.

    I know I was.

    And now, I speak up for unity, for us all to work as equals, to move forward in team work rather than division.. and you accuse me of being dismissive? Despite the fact that at least two well known autistics said the very same thing earlier than I did. Despite the fact that the very self-advocates speaking on your blog right now support what I have said here on my blog before all of this?

    Do you now see why parents are reluctant to get involved? What can we possibly say?? What can we possibly do??

    I like to think that I’m the biggest supporter of self-advocates I know. I wrote that post over a month ago in support of self-advocates, in an effort to get parents to “shut up” sometimes and just support self-advocates.

    And I’m afraid to get involved.

    I speak my mind, no matter what… and I’m afraid to get involved.

    And for what?

    A guy who wrote about how he thought an imaginary parent might feel in a purely hypothetical situation.

    And now, I, a person who writes what (at least 2) autistics have written, who supports autistics through and through, is afraid to speak.

    And when I do, I get a comment like yours. I’m dismissive, not listening and pontificating.

    You’re right, the dialogue does have a lot of “eureka moments” and I do hope that everyone is paying attention to those. But it also has gone off track because it started off track.

    An apple talking to an orange about steak.

  7. Emily Willingham September 27, 2011 at 9:36 am #

    You’re not afraid to get involved. You have done so, but you’ve done so here, in your safe house, while other people have done so over there, autistics and parents and autistic parents alike, and waded right in. Rob is among them. The dialogue started where it naturally arose, between Robert and autistic adults, and it has now already been directed down a profitable, useful path. It could have sat there, that original exchange, an open wound to fester. Instead, TPGA has taken it as a springboard for airing what needs to be aired so that maybe, a plan for mutual action can emerge from it.

    No great change comes without pain, effort, and people putting themselves out there on its behalf. Without people laying the courage of their convictions there, on the line, to make something happen. Conflict isn’t the end of the world. It can be, however, the start of something positive as the roots of it are untangled.

    What can you say? What can you do? Come over there, contribute what you say here to the conversation, and deal with whatever blowback arises from it, there, where the discussion is taking place. Try to address issues being raised, rather than people. Look at the list Melody has provided of what actions might be part of the agenda for moving forward. How can you contribute to those?

  8. Caitlin Wray September 27, 2011 at 11:21 am #

    I think you’re missing out on so much Stuart. Sarah too. There’s an awful lot of good – painfully difficult but good – stuff going on over there. We have all said things we shouldn’t have, but I think that’s been far outweighed by saying things that needed to be said. People have tried to help you understand, but that ultimately is in your hands, not theirs.

    As with any social change, there will be people at the forefront who “get it” and help lead the way. And then there will be those who, for a variety of reasons, take a little or a whole lot longer. The movement will continue on, regardless.

    It’s easy to post your musings here in your territory Stuart, where as the first few comments show, you can count on your regular readers to high-five you. But the thing about learning – real hard-core learning – is that the WORST thing you can do is surround yourself with people who are likely to share your own views. If you are genuinely interested in learning and listening, you’ve got to be brave enough to step out into a group of people whose views are radically different.

  9. Stuart Duncan September 27, 2011 at 11:43 am #

    You both mention that this is my blog, and it is, but it’s certainly not the “safe house” that you make it out to be. If you read my post on this subject from over a month ago (http://www.stuartduncan.name/autism/when-autistics-write-about-autism/), you’ll see that of the 26 commenters, a lot of them are autistics, many of whom are in the discussions on TGPA. They are as free to disagree with me here as they would be there. I do not delete comments.

    If I was to have made this post over there as a comment, who’s post should I have added it to? Who’s discussion should I have derailed off onto some other tangent? Who’s post should I have tried to interrupt for the sake of my own post? That wouldn’t have been fair to anyone. I certainly wasn’t asked to write a post. In fact, of the 5 participants so far in 7 posts, only one non-disabled person has been asked. So, to not take the focus of those who have made great statements and since I won’t be holding my breath on there being any other non-disabled parents asked, I posted here.

    Besides, I think Liz’s ever growing list (http://lizditz.typepad.com/i_speak_of_dreams/2011/09/difficult-but-essential-conversations-week-one-roundup.html) is indication enough of just how many others also feel compelled to post about it on their own blogs.

    And why not? Should a world wide discussion of this magnitude be confined to one website? Are all things Autism to now only ever be discussed on TGPA or, if this is truly so important, wouldn’t it serve the people better to branch it outward so that all people be made aware of it?

    In fact, my very first sentence of this post is a link to it and even encourages people to leave this site and go read it. The first sentence! (I clearly need to rethink how I keep readers around longer.)

    I also don’t think I’m missing out on much. I have read every post and every comment. And if you mean it’s the message I’m missing out on, well, as I’ve stated, I was writing about this before this whole dialogue even began.

    If I wanted to surround myself with people who share my views, they would be self-advocates who feel dismissed, unheard and treated unfairly. Instead though, I post publicly, share publicly and wish to be surrounded by everyone… at least, those willing to talk to each other, listen to each and work with each other.

    You see, my views and my opinions are very much on the side of the self-advocate and how much is still wrong with the world in how it treats those with Autism…

    But because I’m a parent, assumptions are being made about me. That because I want us all to work together, that I am dismissing those self-advocates. Because I am a parent, I am not listening.

    That couldn’t be further from the truth.

    I do find it ironic though.

  10. Caitlin Wray September 27, 2011 at 12:37 pm #

    But you can’t have it both ways Stuart. You argue that this isn’t your ‘safe house’ but you yourself chose to “bite your tongue” there, but post your views here.

    And the old “everybody’s doing it” argument isn’t really a legit defense, is it?

    I’m talking to you because I’m a parent and you’re a parent and as I’ve said at TPGA, I’m disappointed in the parental contribution overall.

    I think we can do better. Throwing around a lot of wistful analysis of fruit and steak doesn’t get us there any faster than empty conflict does.

    There are specific, tangible, visible examples of common ground and progressive movement over at the TPGA dialogues. There are people putting themselves out there to be a part of it. Heading back here to complain about it, while claiming you want everyone to “work together”, just doesn’t seem sincere.

    I know you’ll respond to this with more defensiveness and plenty of justification for your own position, and that’s what I’ve seen from most of the parents. But every time we do, we are letting our OWN children down.

  11. Shannon September 27, 2011 at 12:51 pm #

    Sarah, I came here because Stuart cited @thinkingautism when he promoted this post on Twitter.

    Rob is a grownup, as he reassured us several times during the Dialogues. He didn’t back away even when things became heated. He continues to be involved with other projects that have stemmed directly from the Dialogues, with the original participants. No one likes being criticized the way he was, but he seems to be moving forward.

    The Dialogues are a messy, imperfect process. And not everyone is ready for them, true, but they need to happen even if how they happen isn’t pretty — social justice rarely is. We expected fallout, reactions like yours and Stuart’s. This process cannot happen without confrontation and reactions — though we hope people will get past any defensiveness, start thinking about why they are reacting, and start listening and learning.

    It’s true that TPGA was created by parents and professionals, but to be a resource for the entire autism community, not just parents — and we continue to evolve. Again, imperfectly.

    Stuart, I’m still seeing a lot of talking and redirection and defensiveness, and not much in the way of listening. I suggest you solicit feedback on this post from a wide range of autistic advocates, and see what they have to say, see if they support your proclamation that “I like to think that I’m the biggest supporter of self-advocates I know.” Otherwise, you’re using the autism version of that old standby “I’m not racist, I have friends of all different races.”

    • Stuart Duncan September 27, 2011 at 1:32 pm #

      Shannon said: “Stuart, I’m still seeing a lot of talking and redirection and defensiveness, and not much in the way of listening. I suggest you solicit feedback on this post from a wide range of autistic advocates, and see what they have to say, see if they support your proclamation that “I like to think that I’m the biggest supporter of self-advocates I know.” Otherwise, you’re using the autism version of that old standby “I’m not racist, I have friends of all different races.””

      A lot of talking, redirection and defensiveness… there’s that word again. Yet you didn’t respond to anything I said.
      Once again, it’s “I won’t hear anything you say unless you agree with me” which is kind of the heart of what this whole dialogue is supposed to be, right?
      And yet… every concern I’ve had is met with a lot of talk, misdirection and defensiveness.

      As for soliciting feedback, why do you think I wrote this? Although, I’m not sure whether or not they can “support my proclamation that ‘I like to think I’m the biggest supporter of self-advocates I know'” since I said “I like to think” and that no one else knows all of the people I know… but if my opinion of who’s the biggest supporter that I know is something that can be supported, I look forward to it.

      Again, I hope for the best from these discussions, some good has come from them already. But I have my concerns. I’m sorry I’m dismissing people by having concerns.

  12. Sarah September 27, 2011 at 1:02 pm #

    I’ll tell you why they so badly want the “discussion” back on TPGA and nowhere else, so they can continue to ram their idea of “getting it” down everyone else’s throat. They can’t do that everywhere else where they don’t have the Mob to back them up. Caitlin, like Stuart, I am not “missing out”, I have been reading along, which is why I finally felt compelled to comment yesterday as well as here and on my own blog. It’s you, and clearly the editors, who have this un-deserved self-righteous notion of what’s happening there. You disguise everything you say and do as “getting it”, and please reward me with a gold star! But can I blame you? The only other options there, as have been clearly demonstrated time and time again, are to post a possibly contrary opinion or thought – and if you are not a disabled person and you do that? Watch out, because the “you have no right to disagree with us so we’ll twist your words and claim you meant something else gang” will beat you in to submission.

    Go ahead. You stay over there where you are the star pupil of reverse discrimination 101 and tell yourself you “get it”. Don’t presume, however, to tell anyone else that they don’t, that’s just arrogant.

    Am I angry? Yes. Why? Not because I don’t think this topic or these issues or anything that anyone has to say here or there is bad. On the contrary, I simply think this was handled terribly, and that despite the little rainbow pictures some of you are trying desperately to paint about what has gone on, ultimately, I believe it’s done more harm than good.

    Stuart makes so many excellent points which, frankly, no one ever addresses. It’s just the same silly line over and over… “oh, don’t do this HERE, come over to where we can bash you to do this… oh WE get it, we’re so sorry you don’t… we have done such an important thing even though we ripped a man to shreds for caring about how parents feel and even though this has become an all out attack on him, even though he doesn’t even have an autistic child, and even though the only self advocates we’re using are autistic, no other disability is represented nor are any other non-disabled parents… it’s necessary!”

    Right.

  13. Caitlin Wray September 27, 2011 at 1:18 pm #

    Sarah, I’ve posted a comment on yesterday’s discource which I think helps parents to understand why the initial incident that got this ball rolling, was not in fact “apples talking to oranges about steak”. I hope you’ll read and consider it.

  14. Stuart Duncan September 27, 2011 at 1:19 pm #

    Caitlin Wray

    Defensiveness? Is there any other way to reply to someone? Unless you mean I have to say “yes, you’re right. I’m sorry”… because if I feel that you’re not right, ANYTHING I say will be taken as defensiveness.

    The fact that you didn’t even respond to anything specifically that I said, other than to once again point out that I am here instead of there… I could simply dismiss you as being defensive as well. But I’m not.

    I’m actually not being defensive. I’m giving exactly what is supposed to come of this dialogue.. a discussion. However, unlike you, I do not feel that this dialogue nor all subsequent discussions there after should be contained to only one site on the entire internet.

    And for the record, I have commented on TGPA in these dialogues as well as elsewhere on other people’s blogs.

    You may only see fruit and steak but many others see a woman that labeled herself and I as a direct result of the dialogue on TGPA. A lot of other people see, in this post, a very real and sincere desire for some great things to come of this discussion but also a very real concern of some less positive outcomes as well. That’s what my post is about.

    You talk about people “putting themselves out there” but my site actually ranks higher than TGPA’s on Alexa… it gets more traffic. So yes, this is “my home” but it also means that by bringing the discussion here, it gets in front of many more eyes than it would have otherwise. I’m putting myself out there just as much or even more here. I’m certainly not hiding, as you seem to imply. Also, all the people that come here, will go to TGPA to read it.

    I’m not complaining about the discussion, if I was I would have said that it shouldn’t be happening. Instead, I’m saying that I’m hoping for the best but I have my concerns.

    If I was to complain, I’d have made very clear how it is that in 7 posts and 5 contributors, there’s only 1 NT person to post. If I was to complain, I’d have made it very clear the irony of how a parent wrote about a parent’s perspective, was attacked for “dismissing self-advocates” and then informed that he can’t possibly write for self-advocates because he can’t possibly understand. So what? He can’t write as a parent because it’s dismissive but he can’t write as self-advocate because he isn’t one. Is that the lesson here? Because that’s how this started.

    I didn’t write all that in this post. I did just now, but only to make a point. It’s what many parents are thinking, it’s what many parents are confused about. And rather than just complain about it all, I expressed what I hope will be a really great outcome despite all that.

    This whole ordeal is about self-advocates being dismissed, ignored and shut down, meanwhile parents have 1 representative in a 5 person discussion over 7 days where most parents are confused and afraid to get involved.

    And when we talk about it, we’re told we’re being dismissive. Even though we’re talking about it. When we bring that information home, we’re told that it has to stay where it is. When we have our concerns, we’re told we’re just being defensive and letting our children down.

    You may be upset that I post about it here rather than on TGPA.. which makes it about me, that’s fine. But what’s obviously being dismissed in these *ahem* defensive *ahem* comments is that many other parents feel this way too. Many parents are confused, many parents are afraid to comment, many parents are blogging about it elsewhere and many parents feel shut down and dismissed themselves.

    So, I’m sorry for not throwing all of this into the middle of someone’s comments over there. I’m sorry for bringing this to the attention of people who didn’t even know there was a discussion over there, and then sending them there. I’m sorry for having concerns about people using a label to address me.

    I’ll say this once again though… I do find it all ironic.

  15. Shaun September 27, 2011 at 1:37 pm #

    LOL @ Sarah’s reverse discrimination 101. Yeah, as soon as I’m done here I’ll go right back to making sure able people get turned down for jobs while I use my massive societal influence to only hire Autistics.

  16. Angel G September 27, 2011 at 1:59 pm #

    It’s a sad day when someone is told how and what to post in their own blog.

    It’s a sad day when people are attacked for expressing their valid opinion and perspective.

    It’s a sad day when only three out of 17 comments have to do with the post itself.

    To call Stuart an ableist is so far from the truth it’s laughable. If you knew him at all, you would know that it’s quite the opposite.

    This must stop. This mudslinging, name calling must stop. We MUST agree to disagree and be able to talk without resorting to schoolyard behaviour. We have to set an example to the world. If we cannot at least agree that each person has a valid opinion that deserves (yes DESERVES) respect, then it is all lost.

  17. Caitlin Wray September 27, 2011 at 2:43 pm #

    Sarah and Stuart, there is a remarkably insightful comment near the end of yesterdays discussion (just posted) by a parent named Cath. I really encourage you to read and consider it.

  18. Shannon September 27, 2011 at 3:03 pm #

    The point is not to get more people to comment at TPGA, but rather than it is hypocritical of Stuart to criticize a process about dialogue when he claims to want dialogue, instead of rolling up his shirt sleeves and doing the hard work of participating.

    Sarah, I’d suggest walking away from the Dialogues for a while and coming back when you’re in a cooler space. Then you’ll be better able to judge the real progress that is happening, that needs to happen. Not everyone is ready for these kind of talks.

    Stuart, the crux of what I wrote and want you to respond to is simple: I don’t think you’re listening to what the autistic advocates are saying in the Dialogues. I think you’re dismissing them, and by doing so proving them right.

    Citing examples of advocates who approve of what you’ve written is self-serving; searching out diverse self-advocate opinions would give you credibility. Try posting a query on WrongPlanet.net, for example.

    What Caitlin and I are both saying, what the core of the Dialogues is about, is that you need to expose yourself to potentially non-reinforcing opinions if you want really make a difference for people with autism, including the self-advocates you claim to support.

  19. Stuart Duncan September 27, 2011 at 3:05 pm #

    Caitlin Wray

    I had read that reply… I told you I’m following along 😉

    Anyway, I agree with her but probably not in the way you are thinking.

    See, this post was to express a concern in how some people are interpreting this dialogue and in how there are some unforeseen outcomes deriving from it.

    They are not personal attacks, not even attacks on an opinion, they are concerns. I’m not even angry.

    And yet, rather than “take the dissing”, I’m being attacked for it. I can take the attack, I’m responding as honestly and truthfully as I can, I am still not angry and I still think you guys are awesome even if you all refuse to address those concerns.

    I’m even willing to be proven wrong if that’s where this will lead but I’m not being proven wrong. I’m being attacked for being defensive, dismissive, pontificating and, possibly strangest of all, for feeling uncomfortable in discussing all this in the comments on TGPA.

    So yes, I agree with Cath, but because it’s me, a parent feeling it, I’ll be the one unjustified and ultimately wrong with anything and everything I say.

  20. Stuart Duncan September 27, 2011 at 3:21 pm #

    Shannon,

    I’d love for you to explain how I’m dismissing the autistics that posted. Should I have named them each individually? Should I have praised them in song?

    I truly do love the overall message, the purpose and hopefully, if possible, the positive outcome that we’d all like to see. I especially love their courage and willingness to get involved.

    So if it’s a song that’s needed, I don’t mind. I am a terrible singer though.

    I linked to the dialogues, I encourage everyone to go read it to gain some enlightenment. Actually, I write about this very subject myself! Even in my response to you, I linked to autistics so that they will NOT be dismissed. One of which is IN YOUR DIALOGUE!

    Also, those autistics in those links didn’t approve of what I’ve written, they wrote their posts on their own, some before I wrote mine.

    Also, it’s not self serving, it’s proving a point. One that you again refuse to respond to. Why aren’t you being frank with them? I asked a while ago, you have yet to explain why I am being dismissive but they’re not. If an autistic says what a non-disabled parent says, how is one being dismissive but not the other?

    As for exposing myself to non-reinforcing opinions… that’s what I do daily. I would think you’d know that about me. It’s cute though, you’re little “claim to support”… all the while saying that I’m redirecting, defensive and blah blah blah.

    You’re being exposed to a non-reinforcing opinion and your response is to call me hypocritical and get in a little snip at the end.

    Bravo.

  21. Shaun September 27, 2011 at 3:50 pm #

    You know, Stuart, I’m glad that you’ve been so open about the source of your problem with the dialogue series, because it means you’re a great resource that I can direct others to who might be under the mistaken impression that this is about accepting the voices of parents.

    “In fact, of the 5 participants so far in 7 posts, only one non-disabled person has been asked.”

    Melody is a parent, but you don’t think of her as one of you, do you? You don’t want more parent voices, you want more able voices.

    It is an arrogance of the privileged to expect to be the majority, or be centered in, dialogues about communities they are not a part of. To use the race example, since that seems to be popular here, I would hope you won’t go to a dialogue series about race and complain that only “1 out of 5 of the participants has been white.”

    Furthermore, this discussion isn’t about “what you are” the comments on the post are about “what you did.” The “what you are” conversation is an emotional smokescreen. I’m reminded of when Tracy Morgan went on a homophobic rant, and then all his celebrity friends came out to support and defend him and tell us he “wasn’t a homophobe.” It completely deflects from the issue of what he did, which is make liberal use of homophobic slurs.

    Similarly, all your justifications about whether or not you yourself are a friend to self-advocates are really irrelevant. The content here is is your post and the comments you have made in defending it. You could be Autistic parent Jesus and it still wouldn’t mean you get a free pass on “what you did.”

  22. Angel G September 27, 2011 at 3:55 pm #

    Shaun,

    You quoted “In fact, of the 5 participants so far in 7 posts, only one non-disabled person has been asked.”

    Then you stated “Melody is a parent, but you don’t think of her as one of you, do you?”

    Perhaps you didn’t read Stuart’s quote correctly. He said “person” not “parent”.

    Just sayin’

    As for Melody, I value her opinion greatly. Her post was informative, insightful and appreciated.

  23. Stuart Duncan September 27, 2011 at 4:00 pm #

    Shaun,

    Yes, Melody is a parent and also the person I linked to in my first comment response to Shannon.

    However, she’s also not a “non-disabled person” though. So in that respect, she doesn’t count.

    And I never once said that I expected the privileged to be the majority or the center. I don’t understand how being disappointed that only 1 out of 5 in 7 days means I want the majority. If there were 2 out of 5… that would not be the majority. Going over 7 days, there’s room for even more without being the majority.

    As for ‘what you are’… I’m afraid I miss the point on that. The ‘what you did’ thing though, I do understand, in this case is express a concern.

    Am I not allowed to do that? I don’t get a free pass for expressing a concern? Nothing justifies that?

    I’m sorry.

  24. Shaun September 27, 2011 at 4:54 pm #

    Angel: I did read his quote, very well. My point is at the beginning of the dialogue series able people were saying they wanted PARENT perspectives, that self-advocates weren’t listening to parents. Now that you (plural) suddenly realize we exist in your world, it’s all about able people.

    Stuart: She doesn’t count? Does she count as a disabled person then, since she’s also a parent? What makes you feel entitled to special focus on ABLED parents?

    Spare me your martyr complex. I didn’t say you couldn’t express concerns, I said that your previous behavior doesn’t shield you from an ableist *action*. If you’re being accused of ablesplaining or anything else, you should be able to defend yourself on the basis of your argument, not by amorphous assertions you’re an ally to the Autistic community or whatever.

    And for the record? Parents are posting Thursday and Friday according to the site (they were originally schedully to be posting MWF this week, but we have MRF instead). That’s 4/7 parent perspectives, and 5/10 of the floor.

  25. Angel G September 27, 2011 at 5:05 pm #

    Shaun: Hmmm, you do not know me. I didn’t say that I wanted just parent perspectives. I welcome all perspectives. My perspectives are not as well received – but that’s not my problem.

    And I didn’t just suddenly realize that “we exist in your world”. If you knew me, you would know that I’ve always known. That my family has always known. But that’s my family’s story.

    Stuart has never claimed himself to be a martyr and he is not an ableist. He is entitled to his opinion as you are entitled to yours.

    Painting ALL parents with the same brush would be like me painting all Autistics with the same brush and we both know that doing that is wrong. We are all different. We are all human. We are all important. We are all valid.

    Peace and blessings

  26. Stuart Duncan September 27, 2011 at 5:16 pm #

    Shaun,

    I’m talking about the numbers between disabled and non disabled, you’re talking about parents. If you insist on talking about something different than I am, I’m afraid our numbers will never match up and you’ll continue on arguing with me about a very small point made in the middle of a random post in a much larger discussion that has yet to address the original concerns of the post.

    Also, I never once said that any past behaviours sheild me from anything I do now. It was simply one out of multiple reasons as to how and why I am not dismissive. You picked that one and are calling me a martyr… that’s fine. Why you refuse to bring up the other reasons, I could only guess that you have no good response for as yet.

    I do look forward to the parents posts coming later. I look forward to all of the posts yet to come. I would remind you and everyone that I have been enjoying what the writers have said but I’m sure that would just fall on deaf ears once more.

  27. Zoe September 27, 2011 at 5:18 pm #

    Hi Stuart,

    I’d just like to clear up some things. I’ve seen some people saying that my objection to Robert’s post was that I don’t think NTs have a right to be offended by the R-word, and I’ve seen some people say that I wanted Robert to write from the perspective of someone who wasn’t a parent. I don’t actually think those things — my problem wasn’t with what he said, but what (or rather, who) he left out.

    I wrote this post to clear it up: http://illusionofcompetence.blogspot.com/2011/09/wanting-you-to-listen-to-me-doesnt-mean.html . I don’t think of advocacy as either/or — just because I ask non-disabled people to listen to me doesn’t mean I’m unwilling to listen to them.

  28. Stuart Duncan September 27, 2011 at 5:32 pm #

    Thank you so much for replying Zoe.

    You know, I never once thought those things from your posts. I know you didn’t mean those things you mentioned.

    I actually really love your posts, as I said earlier, I really applaud your courage and willingness to do this.

    I do get the crux of the overall message, I think… as I said, I’ve written about this before and largely been met with positive responses from all parties. It’s an important message.

    My concerns, which I think I made clear in the post, even with a real world example, is that some people have taken their own interpretations of it all and therefore, there have been some “less than positive” outcomes to derive from it.

    So far, no one’s addressed that here… I’ve only been accused of multiple things myself.

    You’re doing a great job Zoe, don’t ever think that I don’t think that. Please. And despite my concerns, as I said in the post, I do still have high hopes for some great things of all this.

    I just wish I could voice concerns without all the attacks. I guess I lost some friends in all of this… I’ll probably never even understand why.

    I suspect, through misunderstandings, the same may have even happened to you. I hope not. You still have the courage to keep on going either way and that is commendable.

    I hope that you always do.

  29. Shaun September 27, 2011 at 5:45 pm #

    Angel: If I’m correct from my cursory examination of your blog, you yourself are an able woman. It is not your place to determine who is and isn’t an ableist.

    That said, I’m not calling Stuart one, and I find it more productive to call actions and words ableist rather than people, except in the most extreme circumstances.

    I was actually speaking in collectivist terms, not addressing you singularly, which is why I indicated the you I was using was (plural).

    I’m not sure what I’m doing that you think I’m painting all parents with the same brush? It is possible to talk about the actions of a group without attributing those actions to every single member of the group.

    Stuart: Or maybe I don’t have the energy to address every single one of your fallacies when I know it would fall on deaf ears? One of the reasons I prefer threaded comments is it allows individual ideas to be addressed and dissected, rather than having to address huge blocks of text. This is also when having a conversation I prefer things be taken point by point rather than all at once.

    If you’re looking to be educated, there’s a very detailed discussion going on multiple posts you could always go engage in. Again, I don’t know why you feel entitled to a greater number of able voices in a dialogue for the disability community.

  30. Stuart Duncan September 27, 2011 at 6:10 pm #

    Shaun, correct me if I’m wrong, but this “dialogue for the disability community” is supposed to involve the non-disabled as well, right?

    “Because it needs to happen. Because being a parent of a disabled child is not the same experience as having a disability, and we need to figure out how we can have productive conversations about that disconnect — especially when it affects our ability to work towards common goals.”

    That’s the quote from the top of one of the posts.

    To me, “productive conversations” are a guarantee so long as you only include people that have disabilities that are all already in agreement. And getting back to the whole Melody is a parent thing… it doesn’t distinguish “non-disabled” parents in that quote but it is implied, in that having a disabled child isn’t the same as having a disability. Which is why I’d like for a “productive conversation” between the two parties to be a bit more balanced than 5 to 1. (and for your future response, I didn’t say equal or majority)

    “entitled to a greater number of able voices” is putting words in my mouth. I never said I’m entitled, I never said greater number. And I think it’s more than clear that everyone involved is an able voice… no matter how the definition has been bounced back and forth in the comments.

    If you’re going to continue swapping words, juggling numbers based on things I didn’t say and putting words into my mouth… this conversation really isn’t going to get anywhere.

    I am beginning to see why I’m being accused of being “defensive” all the time though. I feel like I constantly have to re-explain things I’ve already said and quote myself just so that you can see what it was that I actually said… I’m always defending myself from things you keep misinterpreting or rephrasing to further along an argument that never should have existed in the first place if only you had read it right.

    By the way, even with threaded comments, you’d still be replying to a big block of text. It’s just that it would be indented a bit.

  31. Sarah September 27, 2011 at 7:58 pm #

    @ Shannon – please don’t patronize me. I am allowed to have an opinion about the fact that you and the Mob flat out REFUSE to acknowledge that maybe, just maybe, you are not the pillars of righteousness you make yourselves out to be. You and TPGA made some big mistakes here, and it’s your blindness to that that keeps me away now. I have been reading all the way along.

    Have you?

    Claim what you want about the things that are happening here – yep, there have been *some* productive interactions – but refusing to see that you have also alienated and driven away MANY, should be cause for your concern, and attention. You, should be listening. Not chastising.

    I’ll bet you a million dollars that if Stuart and I were disabled? You’d be listening. And that’s really what we’ve been trying to say – you are not really offering an opportunity for balanced discussion. You have an agenda, our opinions don’t fit in, so we’re summarily dismissed.

    I don’t need to cool off, you need to wake up and take a look at this from all sides, not just the one you’ve chosen to matter.

  32. Kassiane October 2, 2011 at 7:12 pm #

    I’m late to here. And I skimmed because it is a very long post, with a very long comment thread, and all the black on white is hard for me to read. My giant font overlaps and it’s kind of illegible.

    Anyway.

    Please, please, please don’t take my agreement with one thing you said as endorsement of everything you say. My opinions on people’s views are a bit more nuanced than that.

    Thanks!

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