01 November 2012

A Troubling Trend at Sci-Fi Cons (or why we need more Autistics speaking)

Trigger Warning: Ableism, brief cissexist and binarist quote, and descriptions of ableist encounters. 




A Troubling Trend at Sci-Fi Cons
(or why we need more Autistics speaking)

Like many geeks around the world, two Autistic friends of mine, Kassiane Sibley (Radical Neurodivergence Speaking) and Terry Falk*, wanted to attend sci-fi conventions near where they live this year. Terry attended Arisia 2012 in Boston back at the beginning of the year. Kassiane has been planning to attend Orycon in Portland this weekend.

Several months ago, Terry sent this email to a private list-serv (posted with permission) about their experience at Arisia.
I was recently at a panel about autism with no one on the panel who was actually diagnosed or self-identified as autistic, and when I asked about it, the moderator (who was completely ableist even aside from this) said that the people who put together the panel had specifically selected against autistic people because "we would dominate the discussion with our own experiences."  Like that was a bad thing.  And like parents of and professionals who worked with autistic people who were on the panel were not "dominating" it by discussing their experiences. 
Asked for further explanation, Terry shared this formal complaint that they had sent to Arisia's organizers.
I am an Autistic person.  I attended the autism panel at Arisia this year expecting it to be largely a "101" panel, so to speak, about the autism spectrum and issues currently facing Autistic people, with unintentional ignorance that the members of the (hopefully representative) panel would correct and discuss.  Instead, there were no self-identified Autistic people on the panel - it was composed of one researcher, two educational/treatment providers, and two parents of Autistic people.  When I asked after introductions why there were no Autistic panelists, the moderator, Justine Graykin, responded that whoever had put the panel together had specifically opted not to include Autistic people, as it was thought that including us last year had resulted in us dominating the discussion by talking about our own personal experiences.  This was in spite of the fact that both parents of Autistic people were asked about their own personal experiences in that capacity.  When asked about this, two of the panelists - one of the parents and one of the providers - said that they could be Autistic (one was diagnosed as such earlier on in life and was unsure as to whether he believed that diagnosis, while the other was an undiagnosed mother of an Autistic person who suspected that she might be Autistic as well) - but neither of them were there in the capacity of representing the Autistic community as Autistic people.  This lack of representation goes against a key principle of the disability rights movement, that there be "Nothing About Us Without Us," and the fact that this was intentional is incredibly shocking and disappointing. 
In addition, Ms. Graykin did and said a number of ableist and otherwise disrespectful things.  Most notably, in discussing the children she works with in providing educational services, she - a(n at least seemingly) neurotypical and able-bodied individual - got up to do an imitation of the posture and movements of a person with a developmental disability to demonstrate what was "wrong" with it.  She went on to say that Autistic parents of Autistic children should possibly be sidelined or outright excluded from the process of developing their children's educational plan in favor of leaving it to neurotypical parents to make these decisions.  Additionally, she relied on categorizations of Autistic people as "low-functioning" and "high-functioning," which are considered inaccurate and offensive within the Autistic community, and refused to back down from using this terminology when the problems with it were pointed out to her.  Nobody on the panel questioned these statements or actions, though one of the parents, Aimee Yermish, did a nice job of explaining how the educational system and the people working in it could be the problem in a situation just as easily as the Autistic person having to navigate it and how trying to force an Autistic person to act in a neurotypical manner could be very traumatic and counterproductive.  The best thing I can say about Ms. Graykin's contribution to the discussion is that she stated that vaccines do not cause autism, but that should be a starting point, a bare minimum, not the standard to be met. 
I also felt that Ms. Graykin was incredibly disrespectful to me, both in her capacity as a moderator and otherwise.  At the beginning of the panel, I specifically asked (as this had been a problem in other panels and I wanted to be able to participate in the discussion) whether the discussion would be conducted by audience members raising their hands or calling out, and was told that it would involve hand raising only.  I followed this rule in attempting to participate in the discussion, but was repeatedly ignored, while she recognized members of the audience who did not raise their hands and instead called out.  When finally recognized, I re-asked about the rules of the discussion for clarification purposes and as a subtle way of calling this out before making my original point.  After the discussion finished, I went to ask Ms. Graykin about who had made the decision to exclude Autistic people so I could file a complaint with all the necessary information.  Instead, she told me that I was "out of line" for having asked for clarification of the rule, and said that she was "explaining how things worked" to me since apparently admitting that I was Autistic meant that I needed to be treated like a misbehaving child.  She insisted, in spite of my and two other audience members' observations, that she had been observing the rules, and that I was simply being disrespectful in questioning the moderation of the panel.  Thankfully, after the panel, the researcher, Stuart Ferguson, who seemed genuinely interested and receptive to the disability rights angle of this discussion, confronted Ms. Graykin about her excluding me from the conversation, and seemed interested in having an Autistic presence on the panel in future years.  Nonetheless, I was incredibly upset at having spent an hour being discussed in an exclusionary and ableist way in a space I expected to be at least somewhat safe and then being talked down to, arguably on the basis of my disability, for trying to bring attention to the ways in which this was problematic or even trying to be involved at all. 
While I do not object to having parents and professionals take part in a panel discussion about autism issues, I think that it is absolutely essential to have an (openly) Autistic presence on such a panel, representing Autistic people as equal voices in the discussion.  I also think that it's inexcusable to have someone - the moderator, no less - on the panel who can't be aware of their position as an outsider of sorts in this nor be respectful of the people that they are talking about.  I am convinced that many if not most Autistic people, if told what the focus of the panel is, can manage to stay on subject as easily as neurotypicals.  I also can't imagine that at a science fiction and fantasy convention it would be that difficult to find a qualified Autistic person to serve on the panel.  I hope in future years, Arisia will reconsider its position on allowing Autistic people to talk about their own lived experiences and general understanding of the issues involved with being on the spectrum.
Terry described Arisia as a sci-fi con with a social justice bent and mentioned that the convention had been both queer and kink friendly. This is a common problem in so-called "social justice" communities--when people who are good on one set of issues and inclusive of one marginalized community turn around and display staggering bigotry and privilege on another set of issues and toward another marginalized community. I know of a disabled person excellent on disability issues who referred to a non-binary person as "he-she." I know of a person of color very active on issues affecting people of color who confronted me to my face with the suggestion that I'm "too high-functioning" to understand what I'm talking about when I discuss neurodiversity and Autistic rights. 

But evidently, Arisia isn't the only sci-fi con that has this problem of discussing autism without Autistics. 

Kassiane published a post earlier this week describing her experiences with Orycon after learning from a friend that the con "is having a panel about autism & whether there's an increase or not." Kassiane didn't recognize the names of any of the panelists. That was the first warning sign. After emailing the conference organizers, they sent several email replies, some of which included the panelists, essentially explaining away the exclusion of actual Autistic people as convenient and not-that-bad. Each of the panelists are non-Autistic parents of Autistic children. Kassiane received perfunctory responses from each of the panelists confirming their expertise and "sophistication" on the subject matter based on their having Autistic offspring. 

Among the more insulting of the emails that Kassiane received was one from Orycon's chair, self-identified as having Asperger Disorder, who defended the decision because it wouldn't "make the panel more valid" if he were to sit there uncomfortably in front of the attendees (given that he evidently dislikes public speaking). The conference's programming coordinators also called Kassiane's inquiry unnecessarily hostile and judgmental. This is the text of Kassiane's original email. 
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?
I may not have a doctorate in English or writing, but I can speak to my own experiences as a paid freelance editor and writer when I say that I'm fairly certain that the tone of that paragraph isn't unnecessarily hostile or judgmental. The only hostility I could detect in the entire set of exchanges came from Orycon's staff, the panelists, and the convention chair. (You can read all of the emails through links on Kassiane's blog.) Yet even were Kassiane's perceived tone unnecessarily hostile and judgmental, the frequency with which argument from tone is used to de-legitimize Autistics who dare to question systems designed to work against us is astounding. The condescension and derailing from the conference chair with Asperger's is not merely egregious in its paternalism and de-legitimization, but profoundly disappointing in its unveiling of the ableist and dismissive attitudes that even fellow Autistics can take toward their own. 

The idea that it is perfectly legitimate to allow panels consisting entirely of Autistics to speak about issues affecting Autistics is an infantilizing and erasing affront to our dignity. It happened at Georgetown around the same time as the Arisia incident, when the Psi Chi Psychology Honors Society was hosting a panel on "multiple perspectives" on autism with no Autistic speakers. It occurs with depressing frequency around the world in political, scholarly, and social settings. Yet it would never be considered appropriate within the Black community to host a panel consisting entire of white people to discuss any issues affecting the Black community, nor would it ever be considered appropriate within the Queer community to host a panel consisting entirely of cis straight people to discuss any issues affecting the Queer community. 

The common excuse that the organizers can't find Autistics qualified to discuss the specific topic at hand (whether therapies, parenting, education, public policy, research, etc.) is and always will be invalid. If Autistics represent slightly more than one percent of the general population, that means there are over three million Autistics in the United States alone and over seventy million among the global population. Among those millions of Autistics in the United States and in the world, there are researchers (including autism researchers!), educators (including special education teachers!), public policy advocates (including disability policy advocates!), parents (including of Autistic children!), therapists and service providers (including those who serve other Autistics!), and any other group of subject matter experts or professionals imaginable related to autism and developmental disabilities. Certainly, not every Autistic also falls into one of the myriad categories of ambiguously professional experts regularly called to speak on autism, but of the millions of us in the world, there are plenty who do. Your argument is invalid. 

(The same goes for Autistics uncomfortable speaking in public. For as many Autistics who cannot or will not speak in public, there are many others who can and do.)

In almost every venue where autism is a topic of discussion, including on almost every panel discussion about some topic related to autism, there are few if any Autistics involved with the organizing and planning behind the event, and rarely, if ever, any Autistics invited to speak alongside their non-Autistic peers. The absence of Autistic voices in political, scholarly, and social settings when autism is a topic of discussion only further perpetuates the myth that Autistics either cannot communicate at all or else have nothing worthwhile to say or to be heard. This erasure serves primarily to contribute to the overarching perception of Autistics as either unable to understand (because we are Autistic and therefore incapable of grasping complex topics like other people's perspectives--sarcasm) or unqualified to contribute (because we are only capable of understanding and communicating our own personal experiences and lives and never capable of discussing broader, macro topics). Both forms of de-legitimization result in the near complete silencing of Autistic people from every mainstream forum of public discourse. 

I've asked people if they know of any famous Autistics. The only name I hear consistently is Temple Grandin. (Fictional characters and dead people who may or may not have been Autistic don't count.) If I ask people if they know of any famous women or Asians or Muslims or queers, I'll get several names. If I ask if they know of any famous Autistics, I get one. Sometimes none. The absence of our voices is striking.

I need not spend much time explaining that the geek, gamer, and fan communities frequently overlap with the Autistic community. Many neurominorities are disproportionately represented in the very neurodiverse geek, gamer, and fan communities. A huge number of my Autistic friends and acquaintances fall into these categories and frequently attend sci-fi/fantasy/gaming cons. This reality gives these encounters a particularly painful sting that would not have occurred in a context with much fewer Autistics from the beginning. It flavors them with bitter disappointment. You would have expected better from a community already full of Autistics. This would have been expected from parents-only communities, from any community with few to no out Autistics. But not from places that Autistics call home.

We need more Autistics speaking because if this can happen where it hurts, it can happen anywhere, not merely in spaces already hostile to us. Evidently, the standard that anything can happen without us exists even in spaces thought to be safe and welcoming. We need more Autistics speaking because if strangers can name more than one famous Autistic and someone other than or in addition to Temple Grandin, then we've made some bit of progress. Ending the status quo that leaves us very much invisible because of silencing and erasure begins with amplifying the voices and presences of the many diverse Autistics who comprise our communities. We cannot allow those who would erase our presence and chip away at our existence any excuses with which to do so.

We need more Autistics speaking.




__________
For additional writings on Autistic culture, see the Loud Hands Project and Autistics Speaking Day. That's today, November 1.

* Not real name.

5 comments:

  1. Let me add my experience to this. I am Autistic. Both self identified and professionally labeled. i am also a parent. My youngest son is on Spectrum and has medical issues in addition. I am and always have managed his medical and educational services - I sure know what I am doing. In 2004, at Convergence (in Minneapolis) yet another Science Fiction convention, my son had a cyclical vomiting attack. Since the best way to resolve these is to get him angry, we went looking for a blood pressure cuff. The "life support" people refused to provide this, even though it was specified in our son's medical management plan and argued that they had to call an ambulance (which was excluded from the medical management plan unless getting his adrenaline level up did not work.) While I was arguing, his dad grabbed the cuff, put it on him, and then we took it off and took him home.

    Fast forward: about one year. I receive a dertified letter telling me that because of my insistance that the medical plan be followed, I am banned from their convention, from their activities, and on and on, forever. An artist, I send work to their art show with an agent. Others send work with agents. Theirs is accepted, and mine is refused.

    I get an advocate to help me file an eeoc complaint. Apparently the Feds do not consider SF conventions important enough, even if run by nonprofits, to follow through on regarding this k9nd of direct discrimination.

    Need I say, I am not surprised? Been there, Done that.

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  2. To give the comment another perspective, if someone emailed a person identifying as an autistic blogger, but unknown to the person that sent the email, and stated I hear with trepedation(sic) that y'all have discussions about autism on this site, I don't think it likely would sound very friendly or non-judgemental, and at best not respectful if one sending that comment was expecting a respectful response. Particularly considering the email was addressed to a person that might self identify on the spectrum potentially interpreting the comment a little more literally than some others might.

    Specific to the prevalence of autism disorders in the US, the prevalence is not 1% in the general population. The high end current estimate is 2 million individuals diagnosed with spectrum disorders in the US, which is approximately .6 of the population. Of the actual 1 in 88 of children actually identified as diagnosed by the government, 38% have average to above average intelligence based on standard measures of IQ, 44% are diagnosed with Autism Spectrum Disorder, 47% diagnosed with PDD NOS, and 9% diagnosed with Aspergers Syndrome that excludes clinically significant language delays as well as intellectual disability for a diagnosis. Of that 9% of individuals diagnosed with Aspergers syndrome, per the 5 to 1 government identified ratio of males to females, approximately 2% are identified as diagnosed as females with Aspergers Syndrome on the Autism Spectrum. All this data can be referenced from the most current prevalence study supported by the government CDC agency. Not, that I agree that it is absent of methodological limitations.

    There are definitely some individuals on the spectrum diagnosed or self diagnosed, openly representing themselves as such, and providing information they are both skilled and interested in public speaking in front of large audiences, however those individuals that make themselves known to the general public are miniscule in comparison to the estimated 2M individuals diagnosed in the US with Autism Spectrum Disorders.

    An answer to improve this situation might be a concerted/directed effort at better identifying those nationwide that might be interested and provide a comprehensive list on sites like ASAN or ASA, if those people can be identified by those suggesting they know a large number of people on the spectrum.

    The Sci-Fi conventions may be only one of a few genre's of convention like activity that significant numbers of individual on the spectrum might be comfortable in attending. If there is not potential for agreement and middle ground in an area like this, there may be little potential in most other venues.

    And, the potential that there is enough margin of comfort in finding people to participate that do not choose to openly disclose a diagnosis, is much more restrictive and even ableist, as a person on the spectrum that chooses not to disclose a diagnosis, because of real life concerns of discrimination in the workplace or any other personal reason, should not be valued any less in participation in these efforts, including parents suspecting they are on the spectrum, as a self-diagnosis in any case, parent or non-parent, at most, is an educated personal analysis, where one person's personal opinion should not reasonably be valued over another, because of a non-professional judgement from another person potentially based on an armchair analysis of social communication or behavior.

    The common practice of identifying people as neurotypical based on arm chair analyses of social communication and behavior, can also be a type of ableism, practiced in and out of online autism communities. At times this analysis has no basis in fact, where the information is not disclosed, and can be used as a tiered weapon of judgement that in effect illustrates privilege of openly describing one's disability/disorder/condition, over those that exercise their right not to, even in places where there is a legal right to privacy.

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  3. Re Arisia 2012 Autism panel I was there and while I remember it not being especially well moderated I thought it was a beginning. I self Identify as Autistic. I do not have a formal diagnosis,nor am I seeking one at this time. Put simply it takes time and money and energy I do not have. And for what? I do not trust that it protect me rather that it would be used against me, for good reasons of course and with the kindest of intent.
    I did talk with several of the panelist and one mentioned that they had been diagnosed as Autistic,but that they did not believe it . Not every one feels safe in disclosing such information,I certainly do not.
    I just got back from Arisia 2013 and several panels did mention Autism and yes sometimes it me that brought it up. The conversation continues.
    Science fiction fandom does have a considerable Autistic population. It is also a literature of autistic voices.

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  4. "If I ask people if they know of any famous women or Asians or Muslims or queers"
    "If Autistics represent slightly more than one percent of the general population"

    Please request some groups that consist of slightly more than 1% of the population when making comparisons.. Apples are not oranges.

    1) Women consist of ~49% of the pop at birth, and ~66% of the pop. at age 85 (in the US).
    2) Asians consist of 60% of the world's population (but, what's Asian? do Russians count?).
    3) Muslims consist of 25% of the world's population, and are the fastest growing religion.
    4) 3.5% of American adults identify themselves as lesbian, gay or bisexual (there's a lot more social cachet/social recognition (ie: easier to get famous) in being queer). Also, 8.6% (fem) and 10.1% (male) report having homosexual experiences, so perhaps the actual number is higher.

    So, in all, what percentage of Autistic people self-report as autistic, not are diagnosed as autistic? What percentage of the population is that (like queer to homosexual experience)? Are you fluffing your numbers?

    We could have a discussion of high vs. low functioning, but I'm guessing you don't want to hear from the ableist majority on that topic.

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    Replies
    1. -Asians are not 65% of the U.S. population nor are Muslims 25%. Given that we're talking about conventions that happen in the United States, and specifically about the population that attends science fiction/fantasy conventions (which may or may not reflect the general U.S. population to a large extent in racial and religious background), world populations are irrelevant to this discussion.

      -Specifically talking about science fiction and fantasy conventions, Autistics aren't scarce. I won't go so far as to say that everyone who attends them is Autistic (which would be false) or even that a significant majority is (though I wouldn't be surprised), but if you can't find five Autistic geeks at a convention, your Autdar is really off or you aren't trying (and I say this as an Autistic geek).

      -Functioning labels are relevant how? Unless you're assuming that neurotypical parents and professionals can speak better on behalf of "low-functioning" Autistics than can "high-functioning" Autistics, which, even assuming a linear continuum of "low-functioning" Autistic to neurotypical, doesn't make logical sense, as an Autistic classified as "high-functioning" would have a neurology/worldview/lived experience/what have you that's closer to people on the "low-functioning" end of this than would a neurotypical. And since there's absolutely nothing inherently that would keep someone who, for instance, types to communicate (with speech being a typical bright line used to distinguish "low-functioning" from "high-functioning" Autistics) from participating on a panel - in fact, I've been to a couple such panels! - this comment is at best oddly out of place and at worst outright trolling given the author's known position on functioning labels.

      Delete

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