May the 4th Be With You (2019); Acceptance vs. Awareness, Revisited

Content/trigger warning: abuse mention, cursing, slurs (censored)

Happy Star Wars Day!

Honestly, one of my favorite parts of Star Wars Day is that it’s in May, meaning that fucking April is over. (I should just call it Fucking April from now on. It’s no longer April. It’s Fucking April. Or Autism Hell Month.) Unfortunately, when I escaped domestic abuse back in January, I forgot to bring my glitter eye shadow with me. So I’m wearing a glittery shawl, glittery nail polish, glittery earrings, and eye shadow that has at least some glitter in it. And a shirt with Carrie Fisher’s signature on it.

Anyway, May. May is also Mental Health Awareness Month, which…yeah, I’m not big on that name. As I’ve mentioned on this blog before–specifically in regards to autism–“awareness” is not the best concept to use in pro-ND activism. So I’m going to use this entry to talk a little about the terminology surrounding Mental Health Awareness Month and similar concepts related to pro-ND activism.

In my acceptance vs. awareness entry, I said the following:

Needless to say, I don’t like awareness campaigns. This makes me nervous when I see awareness campaigns for mental illnesses. “Awareness”, to me, will always have the connotation of “be aware, these people are Other”. It matters quite a bit, though, who runs the campaigns. Autism $peaks’ flavor of “bewareness” is motivated by allistics who hold an inherently bigoted view of Autistic people. Many mental illness awareness campaigns are actually run by people with the illness. That makes a huge difference. I would still prefer to see acceptance campaigns because I don’t like the connotation of “awareness”, but that might be me.

Yeah, I don’t think it’s just me. “Awareness” isn’t enough. Mentally healthy people are aware of psychotic disorders and they still use “psychotic” to describe violent assholes. Mentally healthy people are aware of cluster B disorders and still use “n*rc*ss*st”, “p****path”, and “s****path” to describe abusers. Mentally healthy people are aware of PTSD and they still use “triggered” to mean “offended”. Mentally healthy people are aware of depression and they still don’t know not to call the police for “wellness checks” when a loved one is suicidal.

We have awareness. What we need now is acceptance. This is necessary in part because acceptance requires understanding. I’ve seen the pattern so many times of mentally healthy people claiming they support their mentally ill loved ones but freaking out and being unsupportive and straight up saneist as soon as their loved ones start showing symptoms. Acceptance means knowing that being mentally ill means having certain traits and symptoms and not being a dickweed when a person shows those traits or symptoms.

Of course, this means that mentally healthy people need to be educated about how mental illness actually works. That, to me, is what “awareness” campaigns should actually be; not just saying “whatever percent of people have X diagnosis” but saying “X diagnosis means [symptoms A, B, and C]” and “X diagnosis does not mean [saneist stereotypes D, E, and F]”. I’m not so naive that I think that all mentally healthy people are going to learn from acceptance campaigns and stop being saneist as soon as they learn the truth about mental illness, but I do think that acceptance campaigns would be a good place to start.

As long as I’m yammering about terms, I don’t like the term “mental health advocate”. A lot of people call Carrie that, but it doesn’t make sense to me. Most “mental health advocates” are actually mentally ill people who talk about the absence of mental health. Being Autistic, I like the term “self-advocate”, which we in the Autie community often use–hell, there’s an entire big Autistic justice organization called the Autistic Self-Advocacy Network–and I think “self-advocate” would make more sense than simply “advocate”. “Mental health advocates” don’t advocate for mental health so much as they self-advocate for a particular kind of disability justice: psychiatric disability/mental illness justice. So “mental illness self-advocate” or “psychiatric disability self-advocate” make more sense to me, because those terms seem to actually mean “mentally ill person who self-advocates for justice for mentally ill people”. If “mental illness advocates” can’t self-advocate because aren’t actually mentally ill, then…well, they probably need to shut up and pass the mic. I also like the idea of “[psychiatric] disability activist” as a term if “self-advocate” seems too, well, self-centered and not focused enough on fighting for justice for the mentally ill community.

Continuing to yammer about terms, I also said this in my last acceptance vs. awareness entry:

Side note: “stigma” is really a manifestation of neurotypicalism. It’s a system of oppression, not just an unfortunate opinion. That’s important to keep in mind.

Still true. Because of this, I don’t like it when people talk about “destigmatizing mental illness” or “mental illness stigma” without mentioning the larger context. Just saying “stigma” isn’t enough because it doesn’t get at the root of the problem. I’d prefer that people say “mental illness stigma as a result of saneism”. Talking about stigma is fine–it totally exists and is a real problem–but the reason why stigma exists is that society is set up to oppress mentally ill people and privilege mentally healthy people. The big picture is always important in social justice. And this includes acknowledging intersecting axes of oppression as well; there are some denizens of Disabled Twitter who I really admire, especially @autistichoya, who often talk about how white supremacy supports ableism and that there is no dismantling ableism without dismantling white supremacy. I really hope to feature a guest blogger on that topic one day. Speaking of passing the mic.

That’s all I have for today. May the Fourth be with you. Wear #glitterforCarrie and fight for justice for mentally ill people in her honor.

Thanks to my only Patreon supporter, Karina! To become as cool as Karina, please consider supporting my work on Patreon: My Patreon.

Walk in Red Instead Challenge

Content/trigger warning: mention of person-first language, discussion of ableism

The Walk in Red Instead challenge was originated by the runner of the Tumblr blog walkinredinstead. I fully admit I didn’t have the spoons to put a lot of effort into this, but for what it’s worth, here is my completed challenge. I did a similar entry last year for the Autism Acceptance Challenge; I did the challenge again this year on Tumblr, but I’m not putting it here because that seems kind of redundant.

Day 1: Favorite autism resources. ASAN and AWN (now called the Autism Women and Nonbinary Network) have some great information. Also, Autistic Hoya (http://www.autistichoya.com/), and @ebthen on Twitter. To be honest, though, I haven’t always seen eye-to-eye with ASAN, and a particular big-name Autistic advocate (who I’m terrified of because she bullied me to the point of triggering my CPTSD like whoa over a misunderstanding, but still) has spoken out about issues she has with ASAN, most notably their events not being accessible to people with photosensitive epilepsy. And one of their co-founders and former president is…uh…I don’t agree with his politics on some crucial issues. But ASAN’s resources on why Autism $peaks is a garbage fire are still good.

Day 2: Selfie day. Not doing this for my safety.

Day 3: Stereotypes. Oh boy. Well, I fit the stereotype that all Autistic people are white, as PoC are hella underdiagnosed. Other than that, I fit the nerdy Autistic stereotype, and while I am socially awkward, I’m not an asshole like Sheldon Cooper the Ultimate Autistic Stereotype. Actually, you know what, I feel like talking about that.

Ways in which Sheldon Cooper is an Autistic stereotype:

-He acts like doesn’t care about the other people in his life
-He’s desexualized for most of the show (because Disabled people can’t be sexual beings, right?)
-He reacts badly to change
-He is an academic hotshot
-He had nerdy intense interests as a child
-He currently has nerdy intense interests
-He’s white, male, and cis

Of course there’s nothing wrong with having nerdy special interests, but the whole asshole thing? That’s a negative stereotype. A lot of autistic people have difficulties with nonsensical allistic social skills, but we tend to be more accommodating than most allistic people because we’re used to needing other people to be understanding. Of course, some autistic people are assholes–there are assholes in every crowd–but being Autistic does not make one an asshole.

Also, being white, male, and cis is…how allistic people seem to think of Autistic people, but it seems like a lot of Autistic people aren’t straight or cis. And I already mentioned that too many Autistic people who aren’t white, male, and cishet are diagnosed late or not at all.

The nerdy special interests are a somewhat justified stereotype, but special interests can be in anything. Pop music, explosives, orchids, cyberpunk, pretty cell phone cases, Victorian literature, anything. It doesn’t have to be trains and superheroes.

Regarding the academic hotshot thing, that’s more of an…ugh…Asperger’s stereotype. IQ is an everything-ist metric that doesn’t measure much of anything useful (more on that in another entry), but Autistic people can run the gamut from being intellectually Disabled to being members of MENSA. To put in a less ableist way, Autistic people can have a wide variety of academic skills and learning difficulties.

Day 4: Support. I could ramble at length about how allistic people can support Autistic people, but the gist of it is: believe Autistic people and organizations who are in the know about neurodiversity and ableism, and forget everything you’ve ever heard from autism parents™ or allistic-run organizations. We–Autistic people–are the real experts on our brains and the accommodations we need.

Day 5: Labels. The correct label for an Autistic person is “Autistic”. Not “person with autism”. Being Autistic is an inherent part of the way an Autistic person experiences the world. Person-first language is both inaccurate in its implication that autism is a disease and ableist in its need to “put the person first” and distance the person from the disability as if disability is an inherently bad thing. Autistic people who use “person with autism” should be referred to as such–people are allowed to have internalized ableism and not value their own existence, fine, whatever–but there is no non-ableist reason for person-first language with regard to autism. There’s a reason I’m putting a content warning on this post for person-first language.

Of course, a caveat with labels is that some people eschew them altogether. I don’t understand that–even if I don’t identify as asexual, I still don’t experience sexual attraction, which means I fit the definition of asexual regardless of whether or not I use the term–but some people don’t like labels and don’t like being referred to with labels. Which is fine. If someone doesn’t want a label applied to them, don’t apply it to them, even if it’s accurate.

Day 6 was Autistics of Color Selfie Day, so needless to say, it wouldn’t have been appropriate for me to post a selfie even if it were safe for me to do so.

Day 7: Special interests. Oh man, I have so many. They are specific enough that I don’t want to list all of them, as there are people out there who would read the list and figure out that it’s me writing this. (People who I don’t want to know that I write this blog.) But here are a few:

-Science fiction, especially if it’s progressive, gay, or both
-Role-playing games
-My harem of fictional wives, most of whom come from science fiction
-Queer stuff
-Cats
-Disability justice (of course)

Day 8: Routine. Oh boy. I actually have a kind of a strange relationship with routines. I am generally productive and (somewhat) emotionally stable when I stick to a routine, and if I’m locked into a routine, I am prone to anger and mistakes when I have to break from that routine. But part of me hates routines because I long to be able to just do whatever the hell I want and relax for a little while.

Day 9: Favorite characters. Well, there are my aforementioned fictional wives, but I’m too identifiable by those, so instead I will also list a few characters I headcanon as Autistic. (Not all of them, as some of them are from obscure fandoms by which I could be identified.)

Steven Universe:
-Pearl
-Peridot
-Steven Universe

Harry Potter:
-Luna Lovegood
-Hermione Granger
-Neville Longbottom
-Arthur Weasley

The Hunger Games trilogy:
-Wiress
-Katniss Everdeen
-Primrose Everdeen

Other:
-Andy Dufresne (The Shawshank Redemption)
-Mako Mori (Pacific Rim)
-Prince Zuko (Avatar: The Last Airbender)
-Sarkan, the Dragon (Uprooted by Naomi Novik)
-Alexander Hamilton (Hamilton: An American Musical)
-Georgette “Buffy” Messonier (Feed by Mira Grant)
-Mel (Sunshine by Robin McKinley)

Day 10: Diagnosis. I was self-diagnosed at about 13, professionally diagnosed approximately 10 years later. I don’t really want to reveal too much personal, so have some bullet points about autism diagnosis:

-Autistic people who aren’t white, male, and cishet are underdiagnosed (as previously mentioned)
-Being a combination of non-white, non-male, and/or queer decreases chances of correct diagnosis
-Being professionally diagnosed has a lot of disadvantages, and it is a valid choice to not seek professional diagnosis
-Self-diagnosis is valid
-Being anti-self-diagnosis is a whole host of -isms (more on that in another entry, probably)

Day 11: Sensory. Oh, wow, where do I start? I have sensory processing disorder and can’t process any kind of sensory input if there’s bright light or loud noise. Simultaneous bright light and loud noise give me crying meltdowns. Some noises, textures, and sounds–especially textures–are…well, I used to have a good phrase to describe them that I can’t use anymore because it reminds of an abusive ex…uh, they’re just fuckawful from a sensory point of view and I can’t stand them. Wet sponges are about the worst. On the other hand, I love to stim…to be continued on day 14.

Day 12: LGBT+ selfie day. Well, I’m really queer, but I’ve mentioned that I can’t post selfies for safety reasons.

Day 13: Community. (Presumably that means the Autistic community.) I’m fairly active in it, and it’s mostly pretty awesome, but I’ve seen a lot of anti-cluster B saneism in a lot of Autistic-run Facebook groups. Because there’s anti-cluster B saneism everywhere besides cluster B communities. *sigh*

Day 14: Stimming. Stims stims stims stims stims 😀 what a good topic. I have a hand spinner that I love, and I often stim with music, but something I do that I feel like is pretty rare is olfactory stimming. I often wear perfume so I can sniff it and just luxuriate in the scent or feel more relaxed. I love going through my perfumes and sniffing them all. When I was younger, whenever I was in a restaurant or store where there were scented candles, I would smell them all. Olfactory stimming is my jam.

Day 15: Family. Blood is not thicker than water. The actual quote is “the blood of the covenant is thicker than the water of the womb”.

Day 16: Friends. I have some wonderful and supportive friends and I’m very grateful for them.

Day 17: Animals. I’ve always related to animals, especially cats, more than people. I currently have an amazing cat who is not a trained ESA, but she sure acts like one.

Day 18: Coping. Something I’m not doing too well right now. Which is why I’m not doing a very good job with this challenge.

Day 19: Mental health. Something I don’t have. A lot of Autistic people develop anxiety and depression due to dealing with ableism, and we’re especially prone to PTSD. As you know if you’ve been reading this, I have all three of those. And BPD. And OsDD.

Day 20: Free day. Can I go back to sleep?

Day 21: Communication. This is an important one. A lot of Autistic people can’t communicate verbally, either always or some of the time. AAC, ASL, writing, and even so-called “behaviors” are communication. Allistics will bang on endlessly about how “mysterious” Autistic people are and how impossible we are to understand. But they’re the ones who refuse to learn how we communicate.

Day 22: Fear. Hmm. Interesting prompt. I would have to say my biggest fear as an Autistic person is that some kind of “cure” (that will probably be based on insufficient evidence or poorly done research, since you can’t cure who a person is) will be promulgated by the mainstream scientific community. Either that or autism genetic markers will be “discovered”, leading to eugenic abortion.

Day 23: Emotions. My emotions are, um, fucking ballistic. I feel everything on a River Tam level. Is this because I’m Autistic? Is this because I’m borderline? Nobody knowwwwwwws!

In all seriousness, though, Autistic people’s emotional tendencies are as varied as allistic people’s; it’s just that not all Autistic people express emotions like allistics do.

Day 24: Autistic girls selfie day. I’m female, but again, safety reasons.

Day 25: Awareness vs. acceptance. I’ve already done an entry on this. Awareness hurts because it makes autism seem like a disease and is generally ableist in every way. Acceptance is necessary for Autistic people to live our best lives in a society that currently rejects us.

Day 26: Free day. Thank fuck; I don’t have the EF for this. I’m going to sleep.

Day 27: Rules/authority. Fuck both. They’re usually ableist.

Day 28: Peers. I don’t understand this prompt. I…don’t get along well with my allistic peers, I guess? I never have. I usually interact well with other neurodivergent people, especially Autistic people.

Day 29: Future. The anti-ableist future where I don’t have to tirelessly put up with and confront ableism constantly? Yes, please.

Day 30: Autistic pride. Okay, here’s my Autistic pride collection on Redbubble. https://www.redbubble.com/people/autisticbanshee/collections/510801-autistic-and-awesome

 

Awareness vs. Acceptance, Revisited

I’m tired.

Mental Illness Awareness Month isn’t as hellish as Autism Bewareness Month. That’s partly because autism awareness and mental illness awareness are two different forms of bullshit. Autism awareness is ableist fearmongering, while mental illness awareness is…a little more complicated than that. But all too frequently, mental illness awareness takes the form of cheesy inspiration porn about people ~overcoming their illnesses and doing ~inspiring things like rock climbing or walking across the country. And putting up with that doesn’t fill me with wrath like autism bewareness does, but damn is it tiring.

An excellent example of this inspo porn—which, much to my chagrin, comes from an actually MI person, but we all know internalized saneism is a thing—is the music video for “Sick of Me” by Beartooth. It can be found here: https://www.youtube.com/watch?v=GCCEhNYOJbk&spfreload=10. Beartooth is a metalcore band fronted by Caleb Shomo, who has, in the past, been locked in a fierce battle with depression, anxiety, and eating disorders. Many of his lyrics ring true to me, and Beartooth is one of my go-to bands for when my brain is being a douchebag. But unfortunately, Caleb doesn’t seem to have gotten the message that every MI person deals with their illness differently, and that presenting only one narrative on dealing with mental illness isn’t all that helpful. In fact, it can hurt.

The video for “Sick of Me” details the experiences of three people with depression. All three of them “overcame” their depression through hobbies. One took up rock climbing, one walked across the United States to raise awareness of mental illness in war veterans, and one took up cosplay. Although I will admit it was cool to see cosplay presented in such a positive light, there’s a major problem with this: depression frequently saps people of the ability to enjoy hobbies. The message that getting into a new hobby is the best coping mechanism for depression flies in the face of how depression actually works. Did certain extracurricular activities, especially music, keep me alive when I was undiagnosed and suicidal? Yes, but I also don’t go around claiming that getting into music or any other hobby is definitely going to help a person deal with depression.

And the “get a hobby” message isn’t the worst part of the “Sick of Me” mental illness ~awareness video. No, the worst part is that Caleb Shomo said “If you can choose, like really choose, to not let anxiety and depression run your life, you’re gonna make it…it’s your body, it’s your life, it’s your choice.”

Fucking excuse me, Caleb? 

Yeah, it’s my body and my life, but it’s also my serotonin imbalance. I can’t choose to change my neurotransmitter levels. I can choose to seek help and support, and to engage in healthy coping mechanisms. But I can’t snap my fingers and say “depression and anxiety can get fucked; they won’t affect me anymore”. Simply saying that a mentally ill person can choose how their mental illness affect them is reductive at best and saneist at worst. I know Caleb’s heart was in the right place, but way the message was transmitted? Yeah, it left a lot to be desired.

“Oh, Mara,” you might be saying, “that’s just one music video! What about organizations like To Write Love on Her Arms?” To which I would reply, “TWLOHA is bullshit and The Semicolon Project can kiss my borderline ass”. Harsh? Especially in light of the fact that the person who started The Semicolon Project just died by suicide? I don’t think so.

TWLOHA claims not to be a Christian organization, but the “story” of TWLOHA, about a girl named Renee who had carved the phrase “fuck up” into her arm, includes the line “[we would be] her body of Christ, to write love on her arms”. The founder of TWLOHA and writer of this story—Jamie Tworkowski—gives all the credit to God instead of the actual members of the church community who helped Renee with her recovery. Why do I have a problem with an anti-suicide organization being Christian? Because pushing religious conversion on mentally ill teens isn’t healthy, and I have a major problem with the evangelizing tendency from Christian orgs even when they aren’t targeting vulnerable young people. In its early days, TWLOHA was also promoted by Christian bands, which…yeah, I’m all for bands using their fame to promote important causes, but not only were these all Christian bands, TWLOHA ended up smacking of a desire to get famous and sell T-shirts as opposed to actually helping anyone. Speaking of which, TWLOHA commercializes the issues of self-harm and suicidality. It makes money because neurotypicals want to sport apparel that makes them feel like they helped when they didn’t actually do shit. Writing “love” on one’s arm doesn’t help one learn how to care for a loved one with depression. A rubber bracelet with a so-called charity’s name on it doesn’t make one more aware of the warning signs that a friend is suicidal. It’s pointless, money-making ego-stroking.

The Semicolon Project isn’t a scam, but it is faith-based, which makes my skin crawl a little, as I mentioned above. And the reason I say The Semicolon Project can kiss my borderline ass is because while the Project claims expertise in all (or at least most) mental illnesses, their information section on personality disorders on their Web site? Yeah, it leaves something to be desired. When I first read it, I thought it was vaguely stigma-enforcing, and then I got to the end of the section and nearly put my fist through the computer screen. The Semicolon Project suggests that people with family members with PDs get therapy because living with someone with a personality disorder is that harmful. Talk about lateral saneism.

Mental illness awareness: usually useless, money-making ego-stroking, occasionally lateral saneism, and very, very frequently bullshit. And I think that’s all I have to say on the subject.

“Wait, Mara, you can’t end the entry there!” you might be saying. “What about acceptance? What would contribute to mental illness acceptance?

Sigh. Fine.

Honesty. Honesty and openness.

Mentally ill people sharing their numerous and varied experiences, acknowledging that different coping mechanisms work for different people, and that no two MI people—even those who share illnesses—are the same. Mentally ill people speaking out against saneist stereotypes. Mentally ill people talking about the ugly realities of mental illness, no matter how much it might scare mentally healthy people, because being aware that a mental illness exists doesn’t mean knowing anything about what it’s like to have that illness. Mentally ill people discussing how therapy and medication helped them. Mentally ill people discussing how therapy and medication weren’t right for them.

Mentally ill people, speaking. Speaking for ourselves. Not mentally healthy people speaking for us or selling T-shirts and bracelets to make themselves feel like they did something good. Knowing mental illness exists is a poor, poor substitute for accepting mentally ill people’s lives and experiences as deserving of respect.

Carrie Fisher quote of the day: “We have been given a challenging illness, and there is no other option than to meet those challenges. Think of it as an opportunity to be heroic—not ‘I survived living in Mosul during an attack’ heroic, but an emotional survival. An opportunity to be a good example to others who might share our disorder.”

 

30 Days of Autism Acceptance

Let’s do something a little different for this entry.

This is from a Tumblr called, well, “30 Days of Autism Acceptance”. They did a 30-day Tumblr challenge that I participated in for Autism Acceptance Month (April).

***

Day 1. Make yourself known.  Tell the world your name and age.  Talk about your diagnosis.  Are you self or professionally diagnosed?  Do you think self-diagnosis is valid?  When did you realize/find out you were autistic?  Post a photo of yourself if you’d like.

I’m Mara Lee, and I’m not comfortable giving my exact age.

I was self-diagnosed circa middle school and professionally diagnosed at 23.

I absolutely think self-diagnosis as autistic is valid, especially because there are so many barriers to paper diagnosis: race, socioeconomic class, disability, and hell, even gender. Autistic women are so underdiagnosed that even the World Health Organization still believes autistic men are five times as common as Autistic women. For all their training, doctors will never know our brains as well as we do. And sometimes they’re wrong! I have an Autistic friend who was misdiagnosed as ADHD! The real experts on autism are Autistic people. That means sometimes we can’t rely on doctors for diagnosis. Especially if they were taught bullshit like the “extreme male brain” theory (gag me).

I realized I was Autistic almost as soon as I found out what Asperger’s was (back when that was still in the DSM). It described me perfectly, although I pass as allistic very well because my mom devoted herself to making me not autistic and forced me to learn allistic social skills.

I’m not posting a photo because I have a cyberstalker.

 

Day 2. Talk about passing and/or being out. Are you out as autistic? How have people reacted? Do they treat you differently after they found out? Do you attempt to pass? If you do try to pass have you experienced autistic burnout from trying to pass?

I’m out as Autistic to almost everyone. Most people are surprised because I am hyperverbal and female, and they don’t see my stims as, well, stims. When I give the example of happy- or stress-flapping as one of my main stims, I usually get “but a lot of people do that”. (UUUUUUUGH.)

I mostly haven’t noticed people treating me differently after I disclose that I am Autistic. If they had in any way besides being openly ableist, though, I probably wouldn’t notice. I think most people don’t believe me or don’t “see me” as Autistic because I’m not a young nonverbal math genius boy who’s obsessed with trains. (This is also ableist, btw.)

I pass, much to my chagrin. I was trained from a young age to act allistic, especially with “social skills” that still make no sense to me. I don’t think I’ve ever burned out from trying to pass, but I am constantly fighting the impulse to elope when allistic social interaction is too much for me. I honestly don’t know how I have the self control to not constantly bolt from interactions at work; on Friday, I had to talk to several coworkers in a row about a work-related issue and nearly went nonverbal and came about this close to bolting three times. It was exhausting.

 

Day 3. Talk about relationships, both platonic and romantic. Have your relationships been affected by your being autistic? Have you found it hard to make and maintain friendships? Do you have a lot of friends or very few?

My relationships have definitely been affected by my being Autistic because pretty much all my interactions with people are affected by my being Autistic. It means I frequently don’t understand certain types of humor, take almost everything literally, and have next to no intellectual empathy. I do find it hard to make and maintain friendships because ableism is so prevalent. It’s rare that I find people I feel safe around. But I do have a few close friends who I absolutely love.

 

Day 4. Talk about your family and support. Who in your life has helped you? Have medical and mental health providers served your needs? Do you feel like your family is supportive of you being autistic?

My friends have been wonderful. They are always open to hearing me talk about ableism, how harmful Autism $peaks is, and what accommodations I need. I have some genuinely great friends ❤

 

Day 5. Talk about employment and your career. What do you do to support yourself? Are you on disability? Was it hard to get?

I work full-time, but do something unique enough that I don’t want to say lest my cyberstalker see this. I often am out of spoons before the workday ends and am sort of useless for the last few hours, but I still wouldn’t trade being Autistic for anything.

 

Day 6. Talk about music, art, writing, and other forms of creativity. Are you a creative person? What do you create? Do you include autistic themes in your creations? Does your creativity help you to deal with your autism?

First of all, I don’t have to “deal with [my] autism” and I do not appreciate that phrasing. But I do a lot a lot a loooooot of creative stuff.

I write constantly. I churn out fanfiction at a rate that I’m not sure is impressive or embarrassing, and many of my fics involve characters I headcanon as Autistic. I have three novels in progress, one of which is on draft four. And the main character in that one is Autistic, as is her best friend. I also have an Autistic character who starts out as a side character and then ends up saving all the “main” characters’ asses at the end of a different novel. My third novel…I’m sure somebody or (multiple somebodies) in there is/are Autistic and it hasn’t hit me yet. I don’t really get allistics, so I probably write plenty of Autistic characters without even realizing it. And very few of my characters are neurotypical. Oh, and I’m also writing a rock opera in which the main character is undiagnosed Autistic.

I have been writing lyrics since I was about 13. I have written several songs lambasting ableism. I wrote one in particular about how Autism $peaks is the devil and that’s an insult to the devil.

As for art…well…I’ll let my Redbubble speak for itself http://www.redbubble.com/people/autisticbanshee?asc=u

 

Day 7. Talk about community. How are you treated by your local community? Do you participate in any online communities? How have they reacted to you being autistic?

Almost nobody in any community reacts well to me being Autistic unless it’s an Autistic community. I’m not in any LGBTQIA+/DSGROI/MOGAI or feminist communities because of how ableist they tend to be. A lot of social justice communities are ableist as hell and are convinced they can’t be ableist because they’re “woke”. It disgusts and disheartens me. And gaming communities? Writing communities? Music communities? Don’t make me laugh. Academic communities? I could write an essay on ableism in academia. A long one.

This is why I don’t have many friends. Finding groups of people willing to see me as Autistic AND a human being? Not easy. People tend to pick seeing me as one or the other.

 

Day 8. Talk about traditional media. Have you been influenced by autism themes in the media? Have you had to correct misinformation about autistic people that others got from the media?

Uuuuuuuuuuuuuuuugh.

Autism is basically never done right. There are a few stereotypes I’ve seen:

-Impossible hell-child (an episode of House M.D. had parents of an Autistic kid be indifferent to their child not dying because he was Autistic)
-Social awkwardness presenting as raving assholery (Sheldon Cooper from The Big Bang Theory)
-Quirky savant (Rain Man)
-Mysterious innocent angel (I can’t think of an example, but trust me, it happens)

I wouldn’t say I’ve been influenced at all by autism themes in the media aside from being blisteringly angry at the terrible representation. I am constantly correcting misinformation about autistic people, some of which i’m sure comes from the stereotypes shown in the media.

And while we’re talking about autism themes in the media, fuck The Big Bang Theory. Fuck fuck fuck fuckity fuck The Big Bang Theory in the ear.

 

Day 9. Talk about Autism Speaks. Do you support them? What’s your opinion about their policies? And/or Talk about special interests. Do you have a special interest? What is it? Feel free to infodump.

Ohhhhhh boy.

Autism Speaks is an ableist hate group that needs to burn to the ground. They support eugenics, ABA, and shocking disabled children as an aversive. They are the worst kind of insidious, evil scum.

 

Day 10. Talk about a cure. What is your opinion about seeking a cure for autism? Do you want a cure? Why or why not? And/Or Talk about stimming. Do you stim? How? What are your favorite stims? Do you have different stims for when you are happy or agitated?

A “cure” = eugenics. Being Autistic is an inherent part of who Autistic people are. If we weren’t Autistic, we wouldn’t be ourselves. “Curing” us would kill who we are. Jim Sinclair said it best: “This is what we hear when you pray for a cure: that your fondest wish is that we will cease to be and that strangers you will love will move in behind our faces.”

Not a happy topic, but something I feel is important. And it made grad school awkward because I knew professors who researched autism, so…yeah, being taught by someone who doesn’t want you to exist? Kind of uncomfortable. I actually put a poster about how A$ is The Worst on one of my professors’ doors when I found out he supported them. I still don’t know if he ever saw it…but how could I not do something?

 

Day 11. Talk about sensory issues. Do you also have sensory processing disorder? What kind of clothes do you wear? What foods do you eat? Are you sensitive to light or sounds? How do you deal with overstimulation?

I do have SPD.

Clothes alone don’t usually bother me, but seams on socks are the devil–actually, fuck socks in general–and itchy tags are also the devil. My SPD makes itself very known when it comes to food. Anything slimy or anything that smells even remotely of fish is a giant pile of not gonna happen. I also hate the texture of kidney beans and anything with a similar texture. I’m not sure what you call that kidney bean-esque texture, but it’s prime nope for me.

As for light and sounds, sudden loud sounds have been known to startle me into shutting down. Being unable to stand loud noises was probably my most obvious Autistic trait as a kid. Loud music is different, but you still won’t find me and my sensitive ears at Warped without earplugs. People noises are also The Worst. Loud cafeterias or restaurants? Oh man I am so out of there. Once in grad school, I eloped the hell out of a noisy cafeteria when the last straw was not being able to hear a pissed-off cashier over the people noises. I’m also hella sensitive to bright light. I have literally said “I can’t hear you; it’s too bright” because my senses were overwhelmed by the light. I see best in low light.

How do I deal with overstimulation? I wear my sunglasses a lot, usually carry earplugs, and if neither of those are available or helping, I get the hell out of there.

 

Day 12. Talk about ableism. Have you experienced discrimination? Have you been the target of hate speech or slurs? Have you been a victim of abuse or violence? What’s the rudest thing someone has said to you about autism or you being autistic?

I have experienced discrimination, mostly from academic professionals who were supposed to be helping me. I have also survived abuse aimed at making me less Autistic, which gave me CPTSD, but I’ve been in therapy for that and am handling it pretty well.

The rudest thing anyone ever said to me about being Autistic was “you’re not r*****ed, you have Asperger’s” when I tried to explain that the r-slur is a slur. I also pretty frequently get the stunned “I never would have guessed”, which is hella insulting.

 

Day 13. Talk about something funny. Has anything humorous or ironic ever happened to you because you were autistic?

*crickets*

Um. Not that I know of. You’d think my brain would be good for a hilarious misunderstanding or two, but I can’t think of anything.

 

Day 14. Talk about role models. Who are your role models? How have they influenced you?

Well, if you’re reading this, you already know.

Carrie. Carrie Fisher. She was my everything.

She was so open and honest about her bipolar disorder. She advocated for everyone getting the treatment that was right for them and removing the stigma around mental illness. Hell, she was even buried in a ceramic Prozac pill.

RIP, Carrie. I miss you.

 

Day 15. Talk about identity. How do you identify? Autistic? Asperger’s? Person with Autism? What’s your take on person/identity first language?

I am Autistic. I was diagnosed Asperger’s at 23, but that is no longer and should never have been a separate diagnosis from Classic/Kanner’s. I support identity first language because being Autistic is an inherent part of who Autistic people are, so saying “person with autism” like it’s a disease or separate from the person is inaccurate and dehumanizing.

 

Day 16. Talk about treatment. Have you been through any therapies? What ones did you like? Which ones didn’t you like? Do you think autistic people need therapy for their autism?

I have had a number of therapists in the double digits, but have never had therapy specifically for being Autistic. I think whether or not any individual needs therapy for any condition that affects them will depend on the individual, and that therapy for Autistic people should focus on getting accommodations and dealing with ableism, not forcing us to act allistic.

 

Day 17. Talk about empathy. Many people think autistics do not have empathy. What’s your experience with empathy? Are you hyper empathic or not empathic at all?

Ooookay.

First of all, unusual empathy is very common with Autistic people. This refers to multiple kinds of empathy as well as being hyperempathic or hypoempathic. There are two main kinds of empathy: affective empathy, the ability to feel what other people are feeling, and intellectual empathy, the ability to think what other people are thinking. Some Autistic people have empathy of any kind, which is okay. Some Autistic people are hyperempathic at one or both, which is also okay. There’s this really unfortunate tendency of hyperempathic Autistic people to be all “Autistic people have empathy! we have too much empathy!” which…A+ lateral ableism, there my guy.

I have absolutely trash intellectual empathy and am hyperempathic when it comes to affective empathy. I feel what other people are feeling way too easily, and it can actually be really debilitating when I take on other people’s negative emotions to such a degree.

 

Day 18. Talk about functioning labels. What is your opinion about functioning labels? Where are you on the spectrum? If you don’t like functioning labels how would you describe your functioning ability?

UGH, functioning labels. They are inaccurate at best, dehumanizing at worst. I don’t like support labels either. I mean, I think they’re better than functioning labels, but I prefer to just be specific. Instead of saying “low-functioning” about a person, say what trait is debilitating to them that causes you to think “low-functioning”. Are they nonverbal? Incontinent? Do they have frequent meltdowns when they leave the house? Do they have zero interest in interacting with other people? Instead of saying “high-functioning” about, say, me, people usually mean “hyperverbal”, “having a high IQ”, or “has a job at a prestigious university”. I once had such a hell of a meltdown on public transit that someone else on the bus asked me if I lived in a halfway house. I was a graduate student living independently and caring for a pet at the time. Functioning labels need to die. They’re useless garbage.

 

TW: suicidal ideation

Day 19. Talk about your struggles and strengths. What things are difficult for you because you are autistic? What are the positives of being autistic? Do you have a special skill or talent?

Oh fuck me upside down, my struggles. Well, right now I’m fighting with suicidal ideation that cropped up over my CPTSD-born sensitivity, and my CPTSD is from someone trying to abuse the autism out of me, so there’s that. I’m also feeling suicidal right now because I feel completely hopeless about the state of the world in that it will never be safe for me as an Autistic person, so I might as well just remove myself from it.

Aside from that sunny thought, my executive function is shit sometimes–I especially can’t keep a living space clean for anything–and grocery shopping is sensory hell and I need Xanax to do it. I also go nonverbal under times of high stress, especially when talking on the phone. That is super inconvenient, mostly because I have been dragging ass when it comes to learning sign, and I don’t use AAC.

As far as positives, my favorite positive is stimming. I also love how much I can enjoy a special interest and how much I can enjoy repeated stimuli that allistics would get tired of. I can usually rhapsodize about how awesome being Autistic is, but right now I’m trying to talk myself out of jumping in front of my train to work tomorrow, so I’m not in the best mood.

 

Day 20. Talk about communication. Are you verbal? Nonverbal? Partially verbal? How do you usually communicate?

I am hyperverbal in most situations. In stressful social situations, I have trouble finding the right words, and if the stress gets bad enough, I become nonverbal. The easiest way to make me go nonverbal is to make me talk on the phone. I started learning ASL to communicate when I’m nonverbal or partially verbal, but I didn’t keep up with it. Bad me.

 

Day 21. Talk about comorbid conditions. Do you have any other disorders commonly related to autism? Were you misdiagnosed as something else first?

I have prosopagnosia, auditory processing disorder, and sensory processing disorder, which I’m not even sure I’d consider comorbid conditions as much as Autistic traits. (Some people consider them comorbid conditions, though.) I also have anxiety and depression, which seem to be fairly common in Autistic people. I also really wish there were more studies about PTSD in Autistic people because it seems like a ton of us get abused for being Autistic and end up with PTSD from it, not to mention we are more susceptible to trauma because we’re sensitive. I have CPTSD, which makes me particularly curious about this.

 

Day 22. Talk about autism parents. How do you feel about this section of the community? Do you feel as if they speak over you? Do you find the term ‘autism parent’ rude or offensive?

Autism parents, a.k.a. allistic parents of Autistic people, do not belong in the autism community. They need to shut up forever. The term “autism parent” is only offensive in that it implies that being the parent of an Autistic person gives you expertise on autism. Which it doesn’t, seeing as autism parents™ (also referred to as paaaaaaaaarents, by the way) are so frequently full of ableist shit.

 

Day 23. Talk about your living situation. Where do you live? Do you live alone or with other people? Are you happy with your current living arrangements?

I am not comfortable answering this.

 

Day 24. Talk about the stereotypes and misconceptions that neurotypicals and allistics have. What stereotypes have you heard about autism? How do you respond to people who have incorrect stereotypes about autism? What kind of things should people not say to autistic people? What’s something you wish NTs/allistics knew about autism?

Ooooooh boy.

I feel like allistics think of Autistic people as “screaming nightmare child” white boys, hyperverbal white boys who are obsessed with trains and excellent at math, or quiet, pure, angelic white boys. They also might think of Sheldon Cooper (as I have said before and will say again, fuck The Big Bang Theory in the ear). here are some other misconceptions I’ve heard about Autistic people:

-We can’t lie (I am an animate coffee cup)
-We have no empathy (true for some of us, and some of have low cognitive or low affective empathy, but it isn’t true that none of us have empathy)
-None of us can learn social skills (I have none naturally, but oh seven hells were they trained into me)
-Our behavior is mysterious and inexplicable (it has reasons, but allistics don’t bother to try to understand what they are)
-There are no Autistic adults/it is possible to grow out of being Autistic (dude…I’m almost 30)
-We’re all white and male (PoC and non-male people are underdiagnosed, and non-male PoC are REALLY underdiagnosed)
-Stimming is something that should be stopped (stopping stimming is abusive)
-It’s always obvious that we’re Autistic

Here’s a list of common things that are said to Autistic people that should never be said:

-”So are you high-functioning or low-functioning?” or any use of functioning labels
-”So I bet you’re great at math, huh?”
-”I never would have known!”
-”So you’re r****ded?”
-”A lot of people are like that” in response to someone explaining an Autistic trait
-Any use of ”handicapable” or “differently abled”
-”Have you been professionally diagnosed?”
-“Your poor parents”
-”You’re too sensitive”/”you’re overreacting”
-”Are you special needs?”

One thing I wish all allistic people knew is that society is set up to oppress Autistic people and that the least they could to is be accommodating and listen to us about our needs.

 

Day 25. Talk about meltdowns/shutdowns. Do you have them? How often? What are your triggers?

I will shut down in response to extreme stress, usually related to social situations. I melt down very, very rarely—about once a year, and I’ve already had one this year and hope that’s it—and I almost never have meltdowns that aren’t set off by the intensity of a post-traumatic flashback. (Ain’t comorbidity fun?)

 

Day 26. Talk about echolalia and scripting. Do you use echolalia? What about scripting?

Oh man, I thrive on scripts. If you hang out around me long enough, you will hear me say the exact same thing multiple times, sometimes in terms of entire anecdotes. The only reason my Autistic ass was good at cashiering was because I was able to rely so heavily on scripts.

I do use echolalia, mostly when I’m really happy and want to verbally stim with a phrase that I find gratifying. Usually it’s a phrase from a movie or a lyric from a song I like. Sometimes when I’m barely verbal, I use echolalia to communicate, but only under stress. My favorite echolalia for a while has been a phrase I saw on Tumblr to describe a pile of kittens: “writhing pile of cat children”. I have to roll the r’s.

 

Day 27. Talk about eye-contact. Do you make eye-contact? Why or why not? Does it make you uncomfortable?

Eye contact is uncomfortable verging on scary for me, but I am a champion at faking it. I try to look at eyebrows or the face as a whole.

 

Day 28. Talk about autism as a disability. Do you think autism is a disability or a difference? Or both? Do you feel more disabled by society than by your autism?

Being Autistic is 100% a disability, and I have never encountered anyone who believes otherwise for any reason besides internalized ableism. (Well, anyone Autistic, anyway; I’m not including allistic people in that because their opinions don’t matter.) Autism is certainly a neurodevelopmental difference, but as an Autistic person, I am disabled by the way society treats me and, yes, by the way my brain works. Society isn’t responsible for me having a meltdown because I heard a sudden loud noise.

The social model holds that disability is due only to the way society treats Disabled people, and as a person with multiple psychiatric disabilities, I VEHEMENTLY disagree. Society does not cause my brain to malfunction catastrophically. Even if there were no ableism, my brain would still malfunction catastrophically, and I would still be Disabled. This is why I favor the complex embodiment model over the social model.

 

Day 29. Talk about executive functioning. Do you experience executive dysfunction? How do you deal with it?

I do experience executive dysfunction, or, as abled people call it, “laziness” or “excuses”. Executive dysfunction can be best described as being a video game character whose abilities are on cooldown. You still know how to do productive things, and you may want to, but the ability is still recharging.

How do I deal with it? Not very well, to be honest. It’s really hard for me to keep a living space clean/organized, and I still haven’t figured out a good way to get that under control. A lot of ~adult responsibilities don’t happen due to my executive dysfunction; I recently cost myself about $400 because my mail-opening ability wasn’t happening. (I have managed to deal with this by always opening my mail right when I get it, because waiting until I have more EF doesn’t work. This will probably push me into a meltdown or shutdown one day, but oh well.)

 

Day 30. Talk with pride. Are you proud to be autistic? How do you show the world your pride?

Yes. Yes, I am. I find pride in one’s identity when it’s a marginalized identity can be pretty damn necessary. Or you’ll end up listening to society too much. I show the world my pride by making Autistic pride designs on Redbubble (mentioned earlier). And doing activities like this 30-day autism acceptance challenge! Oh, and I sang some good outsider anthems for open mic night last year. If there were any convenient open mics, I’d have done that this year.

Acceptance vs. Awareness

Content/trigger warning: Autism $peaks, eugenics, violent ableism

I don’t know what I’m doing. I feel like every other neurodivergent activist who writes as part of their activism knows what they’re doing. But I still feel like I have to try. “Stay afraid, but do it anyway,” right?

And yeah, I know, I know, I started this blog to work on destigmatizing mental illness. And being Autistic is not a mental illness, it’s a neurodevelopmental disability. But I’ve been talking about being Autistic a lot, right? It kind of follows that I might do an autism-related entry. And you know what? It’s my blog, and I’m officially calling it: This Is for You, Carrie is dedicated to destigmatizing neurodivergent conditions including but not limited to mental illness. It doesn’t sound as snappy, but it’s true. (Side note: “stigma” is really a manifestation of neurotypicalism. It’s a system of oppression, not just an unfortunate opinion. That’s important to keep in mind.)

Today I’m going to talk about awareness versus acceptance. And I’m going to talk mostly about autism, but mental illness too. Let’s start with autism.

April 2 was “Autism Awareness Day”. Some in the Autistic community call it “autism bewareness day”. (Note: you’ll always find an Autistic person with internalized ableism who is into awareness and says “person with autism” and believes autism is a tragedy. There will always be token minorities who are lickspittle to the kyriarchy because resisting is hard. That’s part of their journey, but it doesn’t mean they’re right.) Autism awareness campaigns are usually spearheaded by an organization called Autism Speaks, known to the Autistic community as “Autism $peaks” or “Voldemort Speaks”. Aside from promoting stigma, here is a brief list of shit that Autism Speaks has pulled:

  1. Misusing their funds. They have a very low score on Charity Navigator. Only 4% of their funding goes to supporting families with an Autistic family member. 44% of their funding goes to research, which…
  2. ..is pro-eugenics. Their research goal is selective abortion of fetuses that may turn into Autistic people. Not only is this, again, eugenics, but it doesn’t help Autistic people and promotes the idea that it’s better to not exist than to be Autistic. Read that last sentence a few times until you get it.
  3. They chased John Elder Robison, their only Autistic board member, off of their Science advisory board by being unresponsive to his feedback. For most of their existence, they haven’t had any Autistic people on their board of directors. I think they have a few now, but that’s still basically like having a women’s rights organization run almost entirely by men. Think about that.
  4. They use functioning labels and person-first language, which are inaccurate at best and dehumanizing at worst.
  5. They violated copyright and profited off an Autistic self-advocate’s writing for three years. Source: http://yesthattoo.blogspot.com/2014/01/autism-speaks-are-work-stealing-white.html
  6. -They don’t talk about Autistic adults. Apparently we don’t exist.
  7. They misrepresent Autistic people. They show the “quiet angel” stereotype and the “self-injurious, unpredictable screeching and rocking in the corner” Autistic.

Now let’s talk a little about Autism $peaks and my favorite topic: stigma.

  1. Their advertisements and films are about what a burden Autistic people are to society and the people around us.
  2. You know what? Let’s talk about those films. “Autism Every Day” featured a member of their board—their former vice president—talking about how she wished she could kill herself and her Autistic daughter. She also said that the only reason she didn’t do this was because she had an allistic child. Oh, and she said this in front of her Autistic daughter.
  3. “I Am Autism” is a short film that includes an ominous voice, meant to be the voice of disembodied autism swanning about the cosmos, saying things like “I am autism…I know where you live…I work faster than pediatric AIDS, cancer, and diabetes combined…I will make sure your marriage fails”. Yeah, you heard me. They compared my fucking brain to cancer, the thing I research for a living.

Credit to the amazing goldenheartedrose for providing a lot of this information here: http://goldenheartedrose.tumblr.com/post/17644810872/so-whats-the-problem-with-autism-speaks. The inimitable Autistic Hoya, who is a better writer than I could ever hope to be, also writes a lot of great stuff about Autism $peaks. http://www.autistichoya.com/2012/07/georgetown-say-no-to-autism-speaks.html

So I hope it’s clear why anything run by Autism $peaks is going to be shit. I’m not cursing just to curse here either. I mean reproachable, irredeemable, vile, evil shit.

Let’s talk more about their autism “awareness”. It seeks to make people aware, not of how Autistic people are disabled by society or of how we deserve accommodations, but of how our existence is tragic and how we need to be fixed. Their logo is a puzzle piece to represent how we are a puzzle that needs solving, and they have used the slogan “until the pieces fit” and the Twitter hashtag “MSSNG” to reinforce this. (They took this image from the National Autistic Society in London, which used a puzzle piece to represent how ~puzzling and ~mysterious autism is, and they included a crying child on the puzzle piece to represent how much Autistic people ~suffer from being Autistic.) They also bought into Simon Baron-Cohen’s bullshit “extreme male brain” theory to the degree that their logo is blue for boys, contributing to the idea that more boys are Autistic than girls. (Yeah, yeah, I know, the WHO says that too, but that’s because women and girls are underdiagnosed. I wasn’t diagnosed til I was 23 in part because I am a woman.) In short, autism awareness campaigns are bigoted and harmful to Autistic people.

Needless to say, I don’t like awareness campaigns. This makes me nervous when I see awareness campaigns for mental illnesses. “Awareness”, to me, will always have the connotation of “be aware, these people are Other”. It matters quite a bit, though, who runs the campaigns. Autism $peaks’ flavor of “bewareness” is motivated by allistics who hold an inherently bigoted view of Autistic people. Many mental illness awareness campaigns are actually run by people with the illness. That makes a huge difference. I would still prefer to see acceptance campaigns because I don’t like the connotation of “awareness”, but that might be me.

Of course, in a perfect world, we wouldn’t need awareness or acceptance campaigns. But in terms of what the mentally ill community currently needs, I would like to see more of an emphasis on understanding symptoms and what kind of support mentally ill people need. A lot of awareness campaigns do things like list statistics about how many people commit suicide every year or how many people have a particular mental illness. That is useful information, of course, but I would like to see it go a step further and give more information that humanizes those of us who are mentally ill. Numbers alone don’t give us faces.

I think that’s all I have for now. I meant to write more about acceptance vs. awareness for mental illness, but April is hard for me. I only have so many spoons to write about activism.

Carrie Fisher quote of the day, which feels pretty apropos: “I am a spy in the house of me. I report back from the front lines of the battle that is me. I am somewhat nonplussed by the event that is my life.”