The panelists:
-Janet Freeman
-Kamila Miller
-G David Nordley
-Joyce Reynolds-Ward
-Karen Black
I have never heard of any of these people. When we're talking autism, that's actually a very not-good sign. I know all the big names, I know all the local people, I know a fairly large proportion of the not-so-big names. This is what I emailed them. I want you to note how nice I was:
Good morning, I hear with trepedation that y'all have a panel on autism. I hear with more trepedation that I do not know a single one of these people (I know a lot of Autistic people). Are any of the panelists Autistic? If not, why?
(Full Name Redacted)
Thinking Person's Guide to Autism Associate Editor (http://thinkingautismguide.blogspot.com) Radical Neurodivergence Speaking Sole Proprieter (http://timetolisten.blogspot.comThe short answer to my question is "no". I still don't know why, though it seems to be "because fuck you that's why" or "because parents are honorary autistics right?" or "because our one Aspie board member hates public speaking & we couldn't be assed to find an Autistic person who doesn't mind public speaking". Their stated reason was "we can't ask potential panelists if they're autistic!" Except, um, yes you can. If you're talking about a disability, it is absolutely appropriate to ask you if you have that disability. They gave the example of "someone can be straight and be for gay rights"-which is true. But you can't have a whole panel of straight people talking about queer issues! No! Nor can you have a whole panel of white people talking about PoC issues, or a whole panel of men talking about women's issues, et cetera!
All of these emails came in & were sent out again while I was in class. Please have your Bingo cards ready.
I would like you to note, again, that my initial question was "Are there autistic people on this panel?" and that this query has 2 answers: yes and no.
Response the First (Summary: Panelist confirms she isn't autistic but her kids are).
Response email the second:(summary: more parents)
Response email the third(summary: yet another parent)
This one is my favorite for the sanctimony and arrogance with one's own "autism savvy": Response the fourth
I share my perception of the answer (and was nice, ish): My First Response
Dudeguy didn't like my response, also alludes to an email that he never sent me: What that Rickguy said
The email he was alluding to. Which is still a steaming pile, since asking people talking about autism if they're Autistic is actually totally legit: The email alluded to
What I had to say to that: But...what
The chair weighs in, also has no idea what defensive means, and makes a laughable comparison to gay rights: What does defensive mean?
And my response to them: Nice try but no
And some splainin: We're geeks so we totally grok autism
My response to that: Um. No. again.
Allistic person tells me ALL ABOUT AUTISM YOU GUYS: Splainsplainsplain
And then the splainin' privileged tears bingo all in one email: ALL OF THEM
Kind of a let down after the last one, but last panelist confirms he also isn't autistic: But stepdad is totes the same amirite?
Sooo Orycon doesn't even want my money badly enough to give a simple yes or no answer or to do anything about it but to tone police me & give me BS reasons that people who are not like me can talk about people like me without any oversight.
I am disappointed as fuck in Orycon, but I guess I'm glad that they made it very clear that they do not see me as the kind of person worth talking at their event.
**WEDNESDAY MORNING EDITS!!**
Too little too late in the trying to not suck (summary: maybe my autistic kid will talk): Nice sentiment, I guess, but you shouldn't have to be shamed into it.
And some more splainin, with a side of "you should come and be niiiiiiiiiiiiiiiiice to us": Condesplainin'
Look, Orycon, you don't get it. I am not giving you money. Because of this. You got your 'friendly suggestion' in email-like many Autistics, I don't have the money to drop on a con where this sort of oversight was made. I am a fan of stuff, but not enough to bargain my commitment to nothing about us without us.
Aiyo! This is problem. And by problem I mean they should all go be platypuses, since this would prevent them from talking over autistics about autism and make them more awesome at the same time.
ReplyDeleteCan someone explain to me why a scifi con is having an autism panel anyways?
ReplyDeleteI mean... I don't go to an autism conference expecting to watch a panel on Star Trek. I know there's some overlap but sheesh. Can't we keep the medical/neurological conferences and sci fi/cosplay/gaming conferences separate?
Oh, and Orycon, shame on you. "But I have autistic kids and I may not be completely NT now that you ask me and push me about it" isn't good enough.
The degree of arrogance of the Orycon Concom is perfectly consistent with what I expect of Fandom. After all, I was banned from all activities forever related to MisFits (and ConVergence) because I insisted on following my son's medical plan when he, as a 6 year old, was rude enough to have a cyclical vomiting attack at their Con and barf on some of their friends.
ReplyDeleteIf I were you, I would certainly not pay them any money and would continue to publicize their idiocy. Wonder what they think of Spectrum parents who also live there. they would not like this one much for sure!
You are awesome. My favorite quote in this discussion: "I believe you all are the defensive ones."
ReplyDeleteYou wouldn't believe how many times I get told I am being defensive for my outspokenness. (People get defensive about it). These people could have reasonably discussed a solution with you. They aren't necessarily bad people, they just became insensitive as soon as they ignored you.
You are awesome. My favorite quote in this discussion: "I believe you all are the defensive ones."
ReplyDeleteYou wouldn't believe how many times I get told I am being defensive for my outspokenness. (People get defensive about it). These people could have reasonably discussed a solution with you. They aren't necessarily bad people, they just became insensitive as soon as they ignored you.
Would it be OK to forward a link to this to my friend from Portland on the spectrum who attends Orycon every year? He lives in California and takes the train up there so he can see his friends, and gets mad at me because I don't go. (I'm self-employed and not making a profit yet, and don't have enough of the right kind of merchandise to try to sell in the dealers' room.)
ReplyDeleteIt would not be surprising to find more than a few diagnosed or self diagnosed individuals on the spectrum at a sci-fi and fantasy convention, considering the special interest potential in a convention like that. At least a magnet for those on the broader autism phenotype.
ReplyDeleteThe diagnosis is rising stuff is a hot topic among those diagnosed or self diagnosed with Aspergers Syndrome. This finding a person actually officially diagnosed with an Autism Spectrum Disorder to talk about anything about Autism everywhere is no easy task. Many people talking about topics associated with Autism, identifying as autistic, don't have an official diagnosis, so there is nothing for them to disclose medically when interviewed for these type of opportunities.
It is very possible that you corresponded with more than a few in that conversation that are as autistic as others self diagnosed, talking about subjects associated with Autism. If those self diagnosed can do it, those that don't talk about their diagnosis or suspicions of their place on the spectrum have just as much right to participate on a panel discussing an issue associated with Autism.
Finding people officially diagnosed with Autism to speak in front of a convention, for every conversation associated with Autism is not an easy task, even if it were to be a required one. Not a comfortable place for many people on the spectrum, not even sitting in the audience of a convention. Determining who or who is not on the spectrum these days, is almost impossible, a personal issue, and no one's business except for the person on the spectrum. That too is part of Autistic Rights.
Biolartist, go for it. Please do.
ReplyDeleteKatemia, kindly shut it. I know at least 20 people who would have talked for them. We are not hard to find. And if you're presenting yourself as an expert, your qualifications-including status on the spectrum-IS relevant. And they made veryvery sure I knew they're geeks, not autistics.
That is so obnoxious! And I also cannot understand why there'd be a panel on "Autism Epidemic: Yea or Nay?" at a science fiction & fantasy convention! I would find that incredibly jarring. Like, say I'd just come from a panel discussing, say, the biology of dragons or was on my way to one on genealogy in Tolkien, and found one discussing actual, real people like me in the same way! Like I might as well be an Elf or a Vulcan or some other completely fictional species of humanoid.
ReplyDeleteGee, I think KateMia had a valid point about special interest conventions like this attracting some people on the Autism spectrum, considering the high special interest factor.
ReplyDeleteWhile I am behind you on "nothing about us without us" I think you are being a bit harsh on what seems like a group of well meaning lay people. Was there a point in your correspondence where you offered to help them locate people with autism to sit on the panel?
Just re-read the email excerpts and I see that you suggested that they look up ASAN (a roundabout way of suggesting where they might find people with autism willing to be panelists? Why not be more direct?). And then one person's compromise suggestion that her son with autism speak on the panel, which you characterize as "too little too late".
ReplyDeleteIt is too little too late. Once you've started rewriting the manual on HOW TO FUCK UP, you need to backpedal harder than that.
ReplyDeleteAnd not every autistic person wanting to talk on a panel is vastly different from no autistics wanting to talk on a panel.
Further, "autistics might be there" juxtaposed with "how dare you expect representation at a SCI FI CON" is just flat out dishonest. And lazy. And it went nicely with the defensive person calling me defensive.
http://paulacdurbinwestbyautisticblog.blogspot.com/2012/10/the-big-and-ableist-difference-between.html#comment-form
ReplyDeleteThis statement from Katie Miller on the topic, from the link above, speaks volumes:
"Some people choose not to seek professional diagnosis because they have the very legitimate fear that a diagnosis will be used against them in a divorce, custody battle, adoption proceedings, military career, or another situation where one's medical history is revealed."
People that do not reveal a diagnosis, a self diagnosis, or who have adapted and do not fathom the potential they might have an ASD, have autistic rights to participate in these conferences as well, without disclosing a diagnosis, self diagnosis, or not understanding they might be diagnosable, without criticism from others accusing them of being neurotypical. And furthermore, because of these same exact reasons it is an ableist action to assume people are neurotypical unless they disclose that information, of their own free will.
I have been accused of being non-autistic countless number of times, in part, because I don't always hold the majority viewpoint or communicate like some others. That is also an ableist action. I personally know autism research scientists diagnosed on the spectrum that do not release information about any potential of being diagnosed on the spectrum, because of career implications.
Unless the information is released that everyone in these autism conferences are neurotypical, it is an ableist action to assume they are. And considering the genetic roots of Autism it is an ableist action to use the term NT Parent for any parent of a child on the spectrum, unless they disclose they are a neurotypical individual.
The term neurotypical is often used as a tiered weapon of criticism to identify the "nothing with out us" status of people in and out of the identified full autism community in addressing issues associated with Autism. That too is an ableist action, unless a personal status of neurotypical is disclosed from whoever is being identified as neurotypical, from an armchair analysis of their behavior, communication, or identified social status.
Not fully understanding the intentions of others in communication is a commonly experienced phenomenon in the Autism Community. Not at all unusual that two people diagnosed/self diagnosed/undisclosed status on the spectrum communicating would each think the other person is being defensive or offensive. Perhaps ironic in this situation, but not unusual.:).
Also, it appears to me, that at least the folks from this conference took the complaint seriously enough to address it in many different ways to attempt to reach middle ground. In many cases one would have received a standard form letter email response, and no further attempts to reach a resolution.
ReplyDeleteFor example: Ms. "Name",
Thank you for contacting us. We value your input that people on the spectrum should be involved in our conferences in panel discussions on the topic of Autism, and will consider it in our future decisions regarding selection of panelists. (Most common professional organization response)
Instead, one received about 10, perhaps unacceptable, but what seemed like sincere answers from real live human beings.
That's refreshing, in my humble opinion, and also at least some evidence that one was dealing with people on the broader autism phenotype, approaching the situation from the complexity of details, instead of a much broader approach of a standard consumer relations response.:).
Basic disability rights are legally enforced per the laws that currently exist.
ReplyDeleteThere are no disability rights, per current US legal code, that require private organizations to include people disclosing a diagnosis of an autism spectrum disorder in the volunteer or paid employment efforts of the private organizations.
The most that any of these private organizations can do is to provide the opportunity for qualified individuals on the spectrum to volunteer their efforts, or to apply for paid positions, where they meet the qualifications.
However, in most cases, the private organizations cannot legally require people to disclose a diagnose/self diagnosis of an autism spectrum disorder, or legally release that information if they are made aware of it, unless the individual diagnosed/self diagnosed publicly releases that information.
People like John Elder Robison, Temple Grandhin, Alex Plank, Ari Ne'eman and others are in demand as speakers across the nation, as they make their diagnoses made known to the general public, their areas of knowledge specific to the spectrum are advertised and well known across the nation, and their willingness to speak in front of large audiences.
One way to effectively increase the "nothing without us effort", is for more people with autism spectrum disorders or those that identify as self-diagnosed, willing to disclose this information in public, to seek the opportunities that are widely available across the nation.
Compiling a list of people on the spectrum that are willing to travel for volunteer efforts to speak at various places across the nation, and advertising it somewhere like the Autism Society of America or ASAN websites is one idea, but the well known individuals with advertised areas of expertise are usually paid for their efforts, at least per travel and hotel stay, in larger events, than a volunteer supported Sci-Fi convention.
In the last Autism support group I attended in a metropolitan area of about a half a million people there were about 10 in attendance, one comfortable enough to organize the event and speak to the audience of 9, and about 4 people comfortable enough to share information with others.
While this might be an achievable goal in your area, for those that might be interested in volunteering their speaking services it is at most a rare potential in my area, and would most likely require someone to travel from a distant area to provide volunteer speaking services in a panelist discussion related to autism in a convention on the spectrum in my local area.
And, only possible if there were recognized individuals on the spectrum willing to travel and speak on a volunteer basis.
I think there are more than a few on the spectrum that might like to do this, but the travel and hotel expenses for a volunteer effort, don't make the odds too high that it is ever going to happen on a wide scale ongoing basis, across the nation.
I'm listening to you K, and I'm taking in all the information you have provided and attempting to analyze and provide reasonable suggestions.
ReplyDeleteEven if the director of the convention who disclosed she had a diagnosis, had never heard about ASAN, or neurodiversity, by default this was not a nothing with us effort, not only because she is diagnosed on the spectrum and in charge of the convention, but also because this is the type of convention that some people diagnosed with Aspergers show a great deal of interest in, and at least some were likely in attendance. The fact that the convention director was diagnosed with Aspergers, is not likely just a coincidence.
However, it provides some evidence of how far removed the real world is from the internet ideology of neurodiversity, limited to a relative few online sites and blogs, as well as the nothing with out us ideology. If it is important enough it is worth sharing with other people, and providing a detailed account of why it is important, and hope that others can see a valued purpose in it.
However, if these folks you were talking to never heard about it, that's not their fault, it is the responsibility for those that are behind the ideology to get the word out, in a manner where people will notice it, and be interested enough in it, to read about it.
In the general culture the demands on attention are literally beyond reasoned comprehension. This is the type of barrier that charitable organizations face for awareness and support of their missions. Without emotion laden public relations efforts no one will even notice. But on the other hand, if they are abrasive in their efforts they will likely be averted in the future.
There was the highest of potentials that someone would pay attention to you in this "Aspie" friendly convention, with the Convention Director diagnosed with Aspergers. But again, it appears now that it is at least some direct evidence that the word about neurodiversity and "nothing about us", is not on the radar in the real world, not even among those diagnosed with the condition, who are very successful, in some areas of life, even areas that usually attract some people on the spectrum, because of special interests.
The only answer I can see here, is to tactfully inform with positive passion, and hope someone will see similar purpose in the ideology to effect change in the future.
That potential is probably real with this convention director, but this is softball territory, still far removed from the other 99% of the general population without an ASD.
In the real world, abrasive efforts at change, are at best usually ignored with or without a sugar coated email form letters to continue "good" public relations. I'm pretty sure you are fully aware of the worse responses.
It bears keeping in mind that the positive response of Autism Speaks from abrasive efforts in the past was not part of that real world; instead part of the real fuller autism community, similar to this Sci-Fi convention, that cares to some degree, whether or not that is perceived or not.
in NYC the last HOPE conference had Mary and Jack Robison and Alex Plank on a Panel.
ReplyDelete