Tuesday, October 7, 2014

"No, Fuck YOU!" When Your "Allies" Are No Longer Your Allies.

Note: this is a long post. It cites a lot of stuff and attempts to address why the post is being made for people who aren't aware of what is being reacted to and to create a more general post about allying. If you know about what I am reacting to, you can skip the majority of the first part. 

The Thinking Person's Guide to Autism recently fell into some self-inflicted controversy lately because of the managing of their facebook page. The Thinking Person's Guide to Autism (or TPGA) is a book which attempts to educate parents and other caregivers of autistic children on the world of autism and especially its dark sides--anti-vaxxers, medical quacks, and others. It also strives to be an online community and an autistic safe-space. This is where there has been significant controversy. 

The commenting guidelines of TPGA's facebook page is this (edited for length):
We would also like commenters to be thoughtful about how they offer critiques. If a commenter requests advice but uses problematic language, consider that it may be more important to address the concern first and language issue second, as an aside, or not at all -- especially with issues we address frequently, such as "autistic" versus "with autism," or functioning labels.

The editors reserve the right to remove or hide comments that violate our comment policy. We will also consider removing comments if approached by the author of the comment. In general, comments containing the following will be deemed inappropriate: 

  • Vulgar or abusive language;
  • Personal attacks of any kind;
  • Unsupported accusations;
  • Offensive terms that criticize individuals based upon neurology, race/ethnicity/nationality, religious beliefs, sexual orientation, etc.;
  • Spam or unsolicited advertisements;
  • Marketing copy or links promoting services or products;
  • Deeply personal information about other people, including children
  • Comparing autism to deadly diseases like cancer
In addition:
  • Comments should remain on-topic and follow the thread of conversation. We want our discussion archives to be useful.
  • Unless a commenter specifically identifies as Autistic or otherwise, please do not presume the neurology of the person commenting. If a person identifies as Autistic, please do not question their diagnosis, even if they are self-diagnosed.
  • Be thoughtful when contradicting or disputing previous comments. Again, please consider that an opinion in opposition to yours may be put forth due to lack of information, and not to intentionally harm.
  • If you have personal triggers, please consider whether you should participate in specific conversation threads. Conversely, please be considerate of those triggered by certain topics due to past trauma. In all cases, listening is often the best way to learn from discussions.
  • Do not presume all parents are the same. Do not presume all Autistics are the same. Sweeping generalizations can do more damage than good, and hold back those who are trying to move advocacy forward. Statements such as "You parents always..." "Autistics never...." may be grounds for having your comment removed.
    Repeated violations of these guidelines may result in being banned from the blog or Facebook page. [emphasis mine]
    This is largely good policy and it has served TPGA well for a number of years. Compared to many places in the Autism Community, this is just plain radical--in that it treats autistic people as people. TPGA is also run by genuinely nice people from what I have heard. I am friends with an "editor emeritus" on facebook who is pretty awesome. For this reason, TPGA has been viewed as an asset to the Autism Community. However, that is, sadly, no longer the case. 

    TPGA in recent months has experienced a unprecedented growth in terms of "likes" on facebook. That alone has made most threads visually and time-wise, inaccessible to me because of the large amount of comments. TPGA at current has only three moderators for its facebook page and they are not especially diverse in terms of times awake. This means they cannot monitor the comment threads effectively. 

     In addition, there has been a large number of so called "martyr moms" invading the comment section. This term, by the way, is not some sort of epithet the Autistic Communities came up with, but the literal self-identification of martyr moms. Sometimes they call themselves "mother warriors--" a term created by Jenny McCarthy and used widely by organizations like Age of Autism and Autism Speaks. Martyr moms believe they are in a battle against autism, a race against time, and are willing to do anything so that they get their desired child. That includes abusive "therapies" and other forms of dangerous, abusive, and sometimes lethal pseudoscience. They are also verbally abusive to autistic people they meet online for having the audacity to exist and be happy about it. Martyr moms/mother warriors are bullies. Bullies create unsafe space. 

    Recently, TPGA posted a piece meant to stir discussion on the abusive technique known as "Applied Behavioral Analyses" or "ABA." ABA also happens to be popular among "autism parents" in general, despite vocal dissent from traumatized autistic people who have been subjected to it (and not just the Lovaas kind, mind you: all ABA) and the Autistic Communities in general. Martyr moms, however, came out in full force declaring that even if ABA was abusive, that it was necessary to control the "animalistic behaviors*" of autistic people. (*These are their actual words.) 

    This, and other offensive comments (which often contained ableist slurs), were in direct violation of TPGA's guidelines. And just to get the point across about how many horrible things were said, I actually have a favorite group of comments: the ones calling autism a "prison." That night, I was studying for my American Criminal Justice class. I wrote this in response*: "I'm doing my American Criminal Justice homework right now and at no point in my readings have I thought 'you know, this kind of sounds like my autism!' Weird, right?" *(Not on TPGA but rather on a friend's comment thread which was being used to debrief.)

    To say the least, these comments were triggering to a great deal of people--although the martyr moms don't exactly care; they just want to hurt autistic people. The comments were left on the site for hours. Meanwhile, comments made by autistic people were being deleted for swearing. Only after significant prodding, did TPGA relent and delete some of the offending comments.  

    I want to reiterate what had happened. TPGA, The Thinking Person's Guide to Autism, thought that swearing was more offensive than calling autistic people "animals." You know, blatant dehumanization--it's perfectly okay! Saying "fuck" out of exasperation? NO, THAT IS TOO HORRIBLE. DELETE, DELETE!!! TPGA wasn't being indifferent here as horrible as even that would be, but they were actively silencing certain voices--the ones of marginalized people. 

    Fucking ridiculous. And to be fair? This has been a goddamn pattern from day one of TPGA. They have regularly assumed autistic people can "bear the brunt" of abusive while they cushion the blow to parents that maybe, just maybe!, they should give a fuck about Autistic lives. Essentially, it reminds me of how I would get punished for swearing at bullies when someone was bullying me in school--because it's "all about the reaction." (I cannot help but write a note that some serious cringing was involved by even typing that phrase.)  

    And yet, they are supposedly my ally. Well let me tell you something about the term "ally:" it is a verb, not a noun. By this I mean, you cannot "identify" as an ally. You either act like on ally, or you're not an ally. It's that simple. The state of being for people who think a certain group should have rights but are not invested in it happening is called being "sympathetic." In terms of being an ally to autistic people: 

    if you are trying to be an ally, you need to recognize that it’s not about you. If you are talking over Autistics or otherwise bringing the discussion back to center on ‘allies’, you are not a real ally. Real allies tell these people “don’t do that shit. This isn’t about you.”

    If you are really an ally, you are not going to make it about your feelings. Declaring yourself an ally isn’t something you get to do. If you are really fighting with us and for us, it should be because it’s right, not because you want an “Ally!” sticker for your Good Person collection.

    A conditional ally, by the way, is not an ally at all. Anyone who says they’d be for your cause if you weren’t so mean/if you personally educated them on every issue/if you were more appreciative is not an ally. Again, it’s not about the privileged group’s feelings here-it’s about equal rights and about our very existence. My exasperation with nearly everything does not reduce my personhood or the fact that I should have equal rights.

    Let me expand on that a bit: if you’re only for my rights when I give you warm fuzzies, you aren’t at all for my rights. I’d rather know this in advance-before I put effort into you. Building strong allies from relatively clueless people who want to do the right thing is one hell of an energy investment. I do not have the time or the energy to squander on people who are ultimately faux allies. 
    --Kassiane S. http://autisticadvocacy.org/2012/10/what-is-an-ally/

    So while TPGA might be allegedly sympathetic to autistic people, they are most certainly not our allies. Sure, they used to be. They kept the comment section from outright exploding, but the lack of moderation and the double-standard when applied has made them allies no more. So, we responded. I personally sent an email to TPGA reminding them that they have an obligation to keep their supposed "autistic safe space" actually safe for autistic people. As of the time of this writing, two days after I sent the email, I have received no response. On TPGA's comment section, however, there have been more immediate responses--albeit initially delayed by a number of hours. One such person who called TPGA on their bullshit, was Kassiane or Neurodivergent K. 

    She got banned for dissent. 

    If you do not know who Kassiane is, she runs timetolisten.blogspot.com (Radical Neurodivergency Speaking). Kassiane has been doing autistic activism since she was a bit younger than I am now. She invented the term "neurodivergent." She is also one of the most important people in the neurodiversity movement and she is unwilling to let an injustice go unanswered. She truly is the "strong sword of the Autistic Communities." I first met her in February when she presented DisAbused: Rethinking the Presumption of Caregiver Benevolence at the University of Washington's Disability and Deaf Cultural Center. Since then, we have become friends. The supposed reasoning for her getting banned was because "some autistics felt too intimidated by her to comment on TPGA" (not an exact quote). 

    So I wrote this in response, on TPGA: 

    TPGA, I know this isn't true for everyone in the community, but at least for me, Kassiane is one of my biggest role models. 

    She fights back. She will not let injustice go unquestioned. She has taught me invaluable things since I entered the autistic community online. She is eloquent and an amazing teacher. She is one of the best people I have ever met. 

    If I chose anyone in the autistic community to speak for me, it would be Kassiane. 

    Banning Kassiane lets me know that you value bullies over autistic people like her and me. I cannot be in space like that. I have been in too freaking many like it. I have been hurt by too many people who have let bullies continue to bully without impunity. I refuse to be hurt by TPGA. I cannot be a commentator on here unless you un-ban Kassiane.
     I received no response about this either.

    The truth is, you cannot be an ally if you allow this to happen. TPGA, you cannot ally a community by being indifferent to its needs and silencing its opposition to your blatant indifference. We get it. You think you know better and are creating a positive environment for autistic people and parents of autistic people to come together in supporting those autistic children. We know. We know you think you are creating an environment that is educational and beneficial to all, but this is simply not the case. You need to own up to that. You either create a space that is safe for autistic people, or you don't.

    And the truth is, you already decided--and it is the latter. This is despite the fact that autistic people were willing to brave your under-moderated comment section to educate parents--most of whom were unwilling to be educated. That was our time. That was our patience. That was our energy. And you did nothing but exploit it and neglect us.

    So, fuck you, TPGA. Put your goddamn money where your mouth is.



    1. That is terrible you haven't received a response in email yet. I have invited a pm conversation on facebook but I have yet to see anything from that, and I have noticed that most of my facebook commentary has gone missing as well on their page.

    2. Ok so after a pm convo with an (not gonna name yet) mod it is abundantly clear this blog post is beyond necessary.

      I am so shocked some people can keep the "ally" mask up for so long.

    3. Eric this was spot on.. Thank you for writing this

    4. Thank you for this. I missed the whole debacle, so I have been trying to figure out what happened. This is very disappointing. It's just downright embarrassing to be part of this community of parents more often than it is not. I really appreciate what you guys do, and I know it must be so emotionally taxing sometimes, so thank you, sincerely.

    5. This comment has been removed by a blog administrator.

      1. Coming from a BCBA, I find this apocryphal and mildly hilarious.

      2. Yeah, so, apparently you lied about having a leadership role in ASAN Sacramento and apparently you have a reputation for being a misogynistic Aspie Supremacist.

        So yeah, fuck off.

      3. Okay, bruh, so I posted about this comment on my wall and since I'm friends with a good chunk of the autistic community, I've found out about a bunch of the fuckery you've done.

        The fact you thought you could waltz onto my blog with accusations against K and get away without me checking out who you are (if passively) is kind of amazing.