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.

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.”

 

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.”