Thoughts on Carrie Fisher’s Cause of Death Being Released

Content/trigger warning: death, addition

“My mom battled drug addiction and mental illness her entire life. She ultimately died of it. She was purposefully open in all of her work about the social stigmas surrounding these diseases. She talked about the shame that torments people and their families confronted by these diseases. I know my Mom; she’d want her death to encourage people to be open about their struggles. Seek help, fight for government funding for mental health programs. Shame and those social stigmas are the enemies of progress.” –Billie Lourd

So the coroner’s report is in. Kind of. (Manner of death is still undetermined.) But essentially, Carrie Fisher died of her mental illnesses.

I don’t want to think about it. I don’t want to think about how I’m on an atypical antipsychotic that’s known to cause heart problems, but damn does it help with unreality and mood swings. I don’t want to think about how, considering I have found the idea of suicide comforting since I was 10, there’s still a high chance that I will die of my illnesses too. I don’t want to think about how I have hyperempathy and a master’s in biomedical sciences, so it feels like I know exactly what Carrie was experiencing when she died.

But as long as I am thinking about it–can’t exactly help it; fucking hyperempathy–I’m not wild about how Billie went on to talk about “a cure” for mental illness. I could see that for addiction and bipolar, sure, but some mental illnesses aren’t curable. I will always be borderline. I will never know the person I might have been had I not experienced trauma. But I do think Billie is right that Carrie would want her death to encourage people to be open about their struggles.

Well, right now I’m on the struggle bus. Part of me wishes I were dead so I could be with Carrie. (Look, mental illness causes irrational thoughts. Get over it. My brain will latch on to anything that makes me want to die.) I also know that my idolizing of Carrie probably is because I’m borderline, and I genuinely have zero idea how I feel about that. When Carrie first died, I couldn’t help but feel that it was unbelievably unfair that so many disgustingly saneist people were still out there and Carrie, who was so famously open about dismantling saneism, was gone. That’s hitting me again.

I’m also dealing with some residual suicidal ideation because my CPTSD got triggered to hell and back last weekend when someone I was trying to protect myself from told me my attempts to protect myself made her suicidal. I also got gaslit about my sexual orientation and some important personal choices I’ve made. I had hella suicidal ideation on Sunday and Monday, and I’ve been sort of fragile since. I also am going through a career change; I’m going from [redacted because I have a cyberstalker, but it has to do with improving the human condition] to [redacted because I have a cyberstalker, but it isn’t so impactful]. When I was younger, I decided to devote myself to [redacted] because I used to believe that my existence was a cosmic mistake and that I had to contribute to humanity in a major way in order to make up for the fact that I’m alive. So I’m having Feelings about that.

So for the most part, I agree with Billie. Be open about your struggles. Find coping mechanisms that work for you. Donate to mental illness advocacy organizations. Take care of yourself.

Especially if you think you might relapse.

Yes, I heard about the drugs found in Carrie’s system after her death. I think she would be okay with me saying that that means it’s important to know that with many illnesses, relapse is always possible. Recovery is a lifelong process. There will never not be a possibility of relapse. In this case, it looks like Carrie may have paid the ultimate price for her relapse (even though it looks like she was sober when she died). It’s not fair. And it hurts. But it happens. And I think she’d be okay with me saying to my fellow MI people that there is no shame in relapsing, but if you think you might, seek help. I may be reaching, but I would think she would want other to learn from her death, and to know that while relapses do happen, it is always best to try to prevent them with every resource available to you.

I miss you so much, Carrie. It hurts so badly that you died of the illnesses you fought so hard against. I’m trying to keep my head up. For you, Carrie. I miss you. And I swear I will smack the living shit out of anyone who shames you for relapsing.

Carrie Fisher quote of the day: “The only lesson for me, or anybody, is that you have to get help. It’s not a neat illness. It doesn’t go away.” (To me, that doesn’t necessarily mean therapy and meds; it means whatever works for you. But yeah, it doesn’t go away.)

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 Mental Illness Awareness Challenge

I should really do an entry on how mental illness “awareness” is usually useless inspiration porn. But I’m in the middle of a career change, which is keeping me pretty busy, so have the 30 Days of Mental Illness Awareness Challenge created by Marci of “Marci, Mental Health, and More”.

Day 1: What is/are your mental illness(es)? Explain it a little.

-MDD (major depressive disorder), characterized by low self-esteem (and self-hatred in my case), suicidal ideation, self-harm, sleep disturbances, false beliefs (e.g., my existence is a cosmic mistake), and low energy

-GAD (generalized anxiety disorder): constant excessive and irrational worrying about everything

-CPTSD (complex post-traumatic stress disorder): unstable sense of self/lack of sense of self/the personality is subsumed by reactions to trauma and the need to avoid further trauma, nightmares, flashbacks (may or may not involve full-blown reliving trauma; may just be flashbacks to feeling unsafe), dissociation, hypervigilance, tendency to view people and situations in black and white, tendency to idolize and cling to people I feel are “safe”/intense fear of abandonment by said people, rage in response to feeling unsafe/controlled, and chronic feelings of emptiness

-OsDD (otherwise specified dissociative disorder): trauma-related dissociation (best described as “my soul fucked off”) in response to stress

-BPD (borderline personality disorder): unstable sense of self, unstable interpersonal relationships, self-harm, self-hatred, splitting (black and white thinking)

…it’s a miracle I can do anything ever.

 

Day 2: How do you feel about your diagnosis?

What a weird question. Mostly I’m glad I’m properly diagnosed, so I’m aware of the shit my brain likes to pull and can as such address it properly.

 

Day 3: What treatment or coping skills are most effective for you?

EMDR. EMDR is my shit. It has done more for my flashbacks than any other form of treatment. This includes techniques I learned in EMDR such as grounding and going to my safe place. Also, cognitive behavioral therapy has been very helpful for my depression.

 

Day 4: What are the pros and cons of having a mental illness(es) or your specific illness(es)?

Being mentally ill turns you into a badass. You have to fight with your brain, sometimes daily, in order to get through the day. If you can do that and survive, you pretty much have to be a badass.

On the other hand, I have to fight with my brain over things that neurotypicals find easy, which leaves me exhausted at best, and at worst, there are things I’m unable to do or only able to do while suffering. Which does suck.

Oh, and saneism. That’s a real bitch and a half. Especially in the field where I work.

 

Day 5: Do you believe nature (biology/physiology), nurture (environment), a mix, or something else has an impact on mental health?

Wait, really? This is a question? Mental illness can come from nature, nurture, or a combination of both. That’s just a fact.

 

Day 6: Do you have a family history of mental illness or mental health issues?

Yes. I’m fairly sure I inherited a serotonin imbalance.

 

Day 7: Do you think there are any triggers or patterns to how your illness(es) effects you?

Yes. My depression and anxiety rear their ugly heads when I’m already under a lot of stress, especially when I’m having interpersonal struggles or I’m feeling a lot of impostor syndrome. My CPTSD symptoms show up when I am reminded of the person who caused it. That means I have some pretty weird triggers, unfortunately.

 

Day 8: What age you were diagnosed at? At what age do you think your symptoms began? (You can make a timeline)

TW: suicide, self-injury

I learned what suicide was when I was ten, and I found the idea of it comforting. I’ve never been afraid of death. I think that was when I first told my parents that I felt like I wasn’t in control of my life and that I wasn’t happy. I started self-harming about a year later. So I think my serotonin imbalance started kicking my ass right around puberty.

I was diagnosed with major depressive disorder at 19 when I ended up in the psych ward due to suicidal ideation. My next diagnosis was borderline, at 22. After that, I was diagnosed as Autistic and with GAD and CPTSD at 23, then I was diagnosed with OsDD at 26.

 

Day 9: What are some of the important events in your life, that may have effected your mental illness(es) for the worse or better? (You can make a timeline)

There are too many events that affected my brain for the worse. Complex PTSD comes from repeated trauma.

I spent four days in the psychiatric unit of a hospital once. That got me on medication and helped affirm that my problems were real and I wasn’t just “throwing pity parties” or being overdramatic.

 

Day 10: What is the best thing in regards to your mental illness(es)?

I’ve learned a lot about myself and how my brain works. And I have really made some great breakthroughs with my mental health that made me…realize how strong I can actually be. See my earlier note about how being mentally ill makes you a badass.

 

Day 11: What is the worst thing in regard to your mental illness(es)?

TW: suicidal ideation

The near-constant need to tell myself I deserve to live kinda sucks. And ugh so do the flashbacks. It’s a tough call.

 

Day 12: What do you think about your diagnosis in general? (Some ideas are: stereotypes, commonalities, misdiagnosis, over diagnosis)

Content/TW: self-injury discussion

Ohhhhhh boy. Let’s go over the diagnoses one by one, in chronological order of diagnosis:

-MDD (major depressive disorder): Oh man I’m such a stereotype here. I’m a white woman with a socioeconomically privileged upbringing who self-harmed in high school. While we’re talking about stereotypes, I’d like to debunk some. I like debunking stereotypes. Self-injury does not just take the form of white women cutting their wrists. It can be depriving yourself of something you enjoy, triggering yourself, restricting food intake or purging, exercising past what you know you can handle, or any other number of things. People of genders other than “female” can self-harm.

-CPTSD (complex post-traumatic stress disorder): More stereotype debunking! You don’t have to be a veteran to have PTSD! Also, there’s a difference between CPTSD and PTSD. Many differences, actually, but the main one is that CPTSD is caused by repeated, similar traumas and PTSD is (usually) caused by one event. CPTSD flashbacks can also be different; they can involve reliving only the feeling of being in danger or out of control, instead of the full-blast reliving-the-memory-in-its-entirety flashbacks you see in movies. I’ve had flashbacks I didn’t know were flashbacks until later.

-BPD (borderline personality disorder): Borderline people are not any more manipulative, selfish, or abusive than neurotypicals. Personality disorders do not inherently make people abusive. I REPEAT, PERSONALITY DISORDERS DO NOT INHERENTLY MAKE PEOPLE ABUSIVE. If you disagree with this, stay a good distance away from my fists, or they may collide with your face.

-GAD (generalized anxiety disorder): Yes, anxiety is an actual mental illness that can be very debilitating. No, it isn’t just being nervous about stuff. No, it can’t be overcome with kale and yoga. If someone with anxiety says they can’t do something because of they’re anxiety, they’re not overreacting or being too sensitive, and if you push them to do it anyway, you’re being a cockwaffle.

-OsDD (otherwise specified dissociative disorder): This is more of a side effect of CPTSD than its own thing, hence the label “otherwise specified”. Um…hmm…oh, here’s a misconception I can debunk. Not all dissociative disorders are dissociative identity disorder. I dissociate when I feel threatened, but I don’t have alters.

“Mara, you forgot autism!” you might say. No, I didn’t. That’s not a mental illness, it’s a neurodevelopmental disability. And good thing too, because if you got me going about autism and stereotypes, I’d type out a post longer than my grad thesis.

 

Day 13: If you know the criteria of your illness(es) which ones do you think you meet? Or what are your most common symptoms?

Well, this is gonna take a while.

Major depressive disorder:
-depressed mood: yes
-loss of interest in usually fun things: not really
-suicidal ideation: yes, often; probably my most common symptom
-self-harm: yes, from age 13-19
-sleep disturbances: kind of

Generalized anxiety disorder:
-fatigue: eh, kind of
-nausea: yes
-stomach upset: yes
-body aches: sometimes
-insomnia: no
-inability to control anxiety: I’m gonna say yes

Complex post-traumatic stress disorder:
-“classic” flashbacks: yes
-emotional flashbacks: yes
-nightmares: yes
-hypervigilance: yes
-lack of sense of self: yes

Otherwise specified dissociative disorder:
-alters: no
-dissociative trance: I’m in one now
-identity disturbance: yes
-depersonalization/derealization: sometimes, usually depersonalization more than derealization

Borderline personality disorder:
-impulsive behaviors: thoughts, yes; behaviors, no
-substance abuse: no
-unstable sense of self: yes
-unstable interpersonal relationships: kind of?
-splitting: ohhhhhh yeah; probably my most common symptom after suicidal ideation
-“favorite person” attachments: yep
-self-sabotage: sometimes
-self-harm: we’ve been over this
-being constantly convinced that everyone I love hates me: and here we have another super common symptom

 

Day 14: Have you ever experienced stigma?

“Stigma” is a manifestation of saneism and, more broadly, ableism. I feel like that’s important to mention when talking about stigma against mental illness.

And yeah. Yeah, I’ve experienced it. Every time I hear some fucker calling immoral behavior “cr*zy”, it feels like I’ve been fucking stabbed. Need I say more? Actually, I could, but I won’t. It’s been bad and I don’t feel like talking about it right now. Maybe in a later entry.

 

Day 15: How has your life been effected by your illness(es)? (Some ideas are: relationships, career, school)

TW: mention of suicide

My illnesses damn near ended my life. Or at least, they made me come pretty close to ending it. They also seriously affected my attendance in college and grad school, and they’re kicking my ass so hard now that I’m seriously considering (read: desperately aching to do so) leaving my chosen career for something less flagrantly inaccessible.

 

Day 16: How many people are you “out” to with your mental illness(es)? Why?

I’m out to basically everyone because I’m naturally open about mental illness. And it’s kind of hard to combat saneism while hiding that one isn’t sane.

 

Day 17: If you could get rid of your mental illness(es) would you? Why or why not?

I wouldn’t get rid of the BPD because it’s an inherent part of who I am. I wouldn’t want to change who I am. The others can fuck right off, especially the ridiculously inconvenient CPTSD.

Although that brings up an interesting quandary, come to think of it. I wouldn’t be who I am without the trauma I experienced, and CPTSD means a huge part of who I am is a reaction to trauma. But I’ve accepted that. I amend my statement: in terms of the CPTSD, my personality can stay the way it is, but the flashbacks, hypervigilance, and nightmares can fuck right off. So can the anxiety, depression, and dissociative disorder.

 

Day 18: What do you wish people would understand in regards to mental illness and/or mental health?

I could write an essay longer than my grad thesis on this topic. I’ll just make a list of my top 10:

  • When a mentally ill person says their illness is keeping them from doing something, they are being truthful. They are not being “lazy” because their disability is not immediately visible. (Not that physically Disabled people don’t get called lazy too, but you get my meaning)
  • Yoga/kale/acupuncture/exercise/acai berries/nature walks will not cure a mental illness. Full stop.
  • Medication isn’t right for every MI person.
  • Therapy isn’t right for every MI person.
  • It should be more acceptable for MI people to not seek treatment. The medical-industrial complex is ableist and violent. That I choose to make use of it doesn’t mean all MI people should. Also, there are a lot of shitty therapists out there. Trust me. I’ve had plenty, and heard horror stories. Try finding a good therapist while being queer outside a liberal metropolitan area. Go ahead. I’ll wait.
  • Mental illnesses often have measurable and statistically significant effects on the brain. On one hand, this demonstrates that mental illnesses are valid…and on the other hand, rights and respect should be granted to MI people regardless of what an fMRI shows.
  • Personality disorders don’t make a person abusive. Don’t “what about ASPD” me. No diagnosis means a person will become abusive.
  • No mental illness makes a person violent.
  • Functioning labels are used to deny agency to “low-functioning” people and legitimacy to “high-functioning” people. I see this all the time with autism and now I’m seeing it with mental illnesses, especially anxiety. Can we not?
  • Instead of flat discouraging unhealthy coping mechanisms, healthier alternatives should be offered. That’s more helpful.

 

Day 19: Have you ever read a self-help book or a book related to psychology? What is your opinion on them? If you have read them do you have a favorite?

Self-help books. Ohhhhhh boy, that’s a lot to unpack.

If it’s written about a particular disorder and it’s not by someone with that disorder, I don’t trust it. If it’s about a personality disorder or other “scary” disorder and it’s not by someone with that disorder, I REALLY don’t trust it. The only exception to this is The Body Keeps the Score by Bessel van der Kolk, which was recommended to me by one of my few therapists who wasn’t shit.

Why am I like this? Because mentally ill people are the real experts on our conditions. I’m not saying neurotypical psych professionals can’t have helpful insights and ideas, but damn have they given me no reason to trust them as a group.

 

Day 20: Where do you get your support?

My friends! And the awesome woman I’m dating. I have an excellent support system. Unfortunately, no family members are in it, but I deal.

 

Day 21: Many people say stress triggers symptoms, do you agree or disagree?

…seriously? Of course stress triggers symptoms. What the hell kind of question is this?

 

Day 22: What is your opinion on medication used to treat mental illness(es)?

I think it’s an excellent tool that helps many people and saves lives, but that it isn’t necessarily right for every mentally ill person.

 

Day 23: What is your opinion on therapy?

I recognize that the medical-industrial complex is ableist and violent, and sadly, that can bleed into therapy, especially when it comes to involuntary commitment *shudder*. Also, there are a lot of shitty therapists out there; neurotypicals who went into psychology because they find mental illness ~fascinating tend to make terrifyingly bad therapists. It can also be terrifically hard to find an intersectional therapist; I could tell horror stories about therapists who were shitty about my sexual orientation. And heaven knows that more MI therapists need to exist, because the real experts on mental illness are MI people. Still, I think that therapy is a good idea in general and that many MI people can benefit from the right form of therapy. Often one can go through multiple therapists or types of therapy before finding the right one, and I feel like many people don’t understand that. Some people think the therapist/patient dynamic is always toxic and abusive, and I wonder what life is like on their planet.

 

Day 24: What is your opinion on alternative treatments or treatments that aren’t commonly used? (Some examples are: EMDR, hypnotherapy, herbal or vitamin supplements, acupuncture, massage therapy, art, music, or recreational therapy, ECT, VNS, TMS, DBS)

Okay, this list puzzles me. There’s total pseudoscience in there with techniques that have a legitimate scientific basis. Being a scientist, I think that people are welcome to seek “alternative” treatments if they really like the placebo effect that much, and as for less common but scientifically backed techniques (like EMDR, which has done wonders for my CPTSD), well…they’re right for some people and wrong for many.

 

Day 25: What is your opinion on forced/coercion in mental health treatment? Can be legal (law enforcement or psychiatric holds) or a “helping” friend/family member.

It should be considered a civil rights violation.

 

Day 26: How is your day-to-day life effected by your mental illness(es)?

Well, right now I hate my job so much I’m fighting off suicidal thoughts every day, so that’s annoying. Usually the only mental illness of mine that has a profound effect on me is the CPTSD, and only when it’s triggered (usually by someone yelling at me or getting me in trouble).

 

Day 27: Explain a “good” day.

Um…I don’t have any symptoms, I guess? I don’t think I understand this prompt.

 

Day 28: Explain a “bad” day.

There are plenty of ways I could have a bad brain day. The most common one would be that my CPTSD is having such a field day that I can’t go to work because I will definitely be triggered or because I’m dissociated and having trouble grounding myself.

 

Day 29: What are a few of your goals regarding your mental health?

TW: suicide mention

The main one is to die by something other than suicide. I don’t have any other particularly concrete goals with mental health.

 

Day 30: What does recovery mean to you?

I don’t think being fully cured is ever possible, so not that. Recovery for me would mean no more flashbacks or dissociation, or at least being able to deal with them promptly if they happen. I also don’t think I’ll ever be free of suicidal thoughts, but I am in a good place regarding how I deal with them.

 

Carrie Fisher quote of the day: “I really love the Internet. They say chat rooms are the trailer park of the Internet, but I find it amazing.” I know, not mental illness related, but this is a blog on the Internet.

 

This is the most literal mental health day ever

Content/trigger warning: suicidal ideation, self-harm

I took the day off work because I was triggered badly on Sunday night and spent most of that night looking up the LD50 of my psych meds to see if I could kill myself with them (I can’t, and decided not to anyway), and was a wreck most of yesterday. And I’m realizing something.

I was diagnosed with BPD once. The doc who diagnosed me didn’t believe I was Autistic, so I didn’t want to believe anything he said. But he also realized I had PTSD. And he was obviously angry at the person who had caused my PTSD, and that person believed I “had Asperger’s”, and I didn’t the doc wanted to lend credence to any of that person’s ideas.

Here is a list of BPD symptoms I have:

-paralytic fear of abandonment
-splitting (failure to bring together the dichotomy of both positive and negative in people, leading me to believe the person who gave me my CPTSD is nothing but a big scary monster as opposed to a flawed person who fucked me up by accident)
-self-hatred, feelings of worthlessness, and constant self-deprecation (although some of that may be depression-related, because my SSRI does help)
-self-harm (over bad grades because my identity was dependent on my grades)
-imprinting on people and idolizing them (they become my “favorite person”, or “FP”)
-unstable sense of self/easily influenced by other people’s ideas (this is why I’m such a hardass about ableism; it keeps me from being swayed by bigots)
-overreacting to, like, everything
-disordered eating patterns (in my case, restricting and purging)
-very intense emotions, especially rage/intense anger
-suicidal ideation (although, again,  I think my depression is responsible for some of that)

I thought that these were caused by depression, CPTSD, or being Autistic–the black-and-white thinking is also an Autistic thing–but the overreacting, the idolization, and the feelings of worthlessness (which I remember pre-dating my trauma), and the fucked-up eating patterns…I think the diagnosis of BPD fits. I feel like it fits. I feel like “borderline” is an accurate description of me.

Mental illness count is up to five. That’s a depressive disorder (MDD is the diagnosis, but I think double depression is more appropriate), GAD, CPTSD, OsDD, and BPD. Is it any wonder I reclaim “crazy”?

So obviously now I will be talking about neurotypicalism against personality disorders at some point, but for now, I want to present another list: how to treat a borderline person with care and respect.

  1. Say you care. People with BPD often deal with their brains constantly whispering “everyone you love hates you”. In the absence of hearing other people say they care, borderline people assume that no one cares.
  2. Tell them what’s real. Sometimes we lose track of reality. If a person with BPD needs to hear “it’s Tuesday” or “that shirt is green”, please indulge them, even if it seems silly to you.
  3. Little concrete gestures mean everything. Even if it’s just a post-it note that says “hey, you’re cool :)” left on someone’s desk. It provides some nice physical evidence when a person with BPD has issues with their brain is being a douche.
  4. People with BPD will often come to the incorrect conclusion that you’re mad at them. Please don’t get annoyed if a borderline person asks “are you mad at me?”. Our brains lie to us. That’s not our fault. Please take the time to say “no, I’m not mad at you”.
  5. Understand how hard people with BPD may cling, and that sometimes we may push you away just as much as we may cling. Both mean we are afraid of losing you, or we may be afraid of how close you’re getting because we don’t want to get hurt. If a person with BPD is either pushing or clinging, this is a good time to ask us if a hug is okay.
  6. Don’t listen to the bullshit that’s floating around about how people with BPD and other personality disorders are inherently manipulative, selfish, or abusive. If someone with BPD comes to you asking you to tell them they aren’t a bad person because of their disorder, tell them what they need to hear. No mental illness makes a person inherently abusive.

That last one is especially important. You may hear that people with BPD are dangerous, manipulative, selfish, etc. It’s not true. Don’t avoid us. We need love the same as anyone else.

Carrie Fisher quote of the day: “If my life wasn’t funny, it would just be true, and that is unacceptable.”

May the 4th Be With You

Well, it’s Star Wars Day, and here I am writing without knowing what I’m doing. Again. Hi.

My second entry on why acceptance > awareness is still in progress, so I’m going to use this (short) entry to say I hope all my fellow neurodivergent people are having a good Star Wars Day. Make sure to practice self-care, take your meds if you are consensually on meds, speak your mind despite the haters, and wear glitter (or whatever serves as psychological armor for you). For Carrie.

RIP, Carrie. You were irreplaceable and we still miss you. And May the Fourth be with you, readers.

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.

I’m going to tell you a story

Content/trigger warning: brief mention of suicide attempt

So I’m the lead singer for a metal band.

Yeah. It’s pretty cool. (Well, it was until they posted on Craigslist about looking for a new singer behind my back. I left.)

I recently wrote a song about anxiety. I called it “Stay Afraid, But Do It Anyway” after Carrie Fisher’s quote about following one’s dreams while mentally ill. The lead guitarist, who is really the creative force behind the group (although I hope to have more input on the lyrics soon), asked me what the title of the song was after I sang it for the first time. I told him, and I said it was a Carrie quote.

And the drummer–let’s call him Jimmy–said he didn’t like Carrie Fisher.

Fucking excuse me, dude!?

He proceeded to insult her for sleeping with Harrison Ford (yeah, if you were a 19-year-old undiagnosed, mentally ill, insecure young woman who had been drinking when a movie star fifteen years older than you came onto you, I bet you would have said no, right, dude? And don’t we all do ill-advised shit at 19? Especially MI people? I mean, I tried to drink bleach), not aging well (you better pray you still look as good as she did at 60, not that it fucking matters), and, to top it off, he said some bullshit about her being “bitter and angry” and “hating Star Wars“. Um…what? She had every right to be bitter about the shit that her brain and Hollywood put her through, and the thing was, she wasn’t. She had an amazing sense of humor about it. She didn’t only have an adaptive attitude, she made the rest of us laugh with her. And she didn’t hate Star Wars; her home was decorated with tons of Princess Leia paraphernalia. Harrison Ford hates Star Wars.

Oh, and don’t get me started on the saneism. He said his reaction to Carrie’s books was “stop bitching”. M O T H E R F U C K E R have you ever been bipolar?? No? Then you stop bitching about someone whose experiences you can’t begin to understand. I have four and a half mental illnesses, and I still don’t know what it’s like to be bipolar (although I do understand what it’s like to have your brain betray you, and to resort to wry humor and glitter to deal with it). And as for her relationship with her parents (touched on in Postcards From the Edge), she had every right to bitch about her dad, and she ended up having a good relationship with her mom. (Let me guess, Jimmy, you haven’t seen Bright Lights.) And trust me, having a good relationship with your parents when you’re mentally ill? PFFFF. Yeah, right.

I. Went. Off.

Politely.

The lead guitarist backed me up, fortunately, but Jimmy was still being a dick, so I said “if we’re done pissing on one of my favorite human beings ever, can we rehearse?”

So we started up the song I wrote inspired by Carrie. I mentally said to myself “fuck you, Jimmy; this is for you, Carrie” as the first notes played. I proceeded to sing the ever-loving crap out of the song. I actually wrote a pretty difficult piece (apparently I hate myself…well, actually, we know I hate myself…depression and all that), but I did it perfectly.

When we were done playing, the lead guitarist said I sounded the most confident on that song, as opposed to the three others we had rehearsed that night. I mentally laughed and verbally said some only half-untrue crap about how that song was the easiest for me because I wrote the lyrics and melody, which I hadn’t done for the other three songs. But I wasn’t singing with confidence.

I was singing with “fuck you, Jimmy”.

Carrie used to say “resentment is like drinking poison and expecting the other person to die”. I know, Carrie, but the difference between poison and medicine can be the dose. From now on, if I’m having trouble getting into a song for the band, I’m not going to sing with confidence; I’m going to sing with “fuck you, Jimmy”.

For you, Carrie.

And fuck you, Jimmy.

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.”

You Are Not a Little Neurodivergent

Content/trigger warning: discussion of saneism

Let’s talk about what it doesn’t mean to normalize mental illness. Or rather, let’s talk about one thing I see from neurotypicals that seems aimed at normalizing mental illness, or at least familiarizing themselves with mental illness, but is actually misguided and neurotypicalist.

This is going to be a short entry because I can only keep up unbridled rage and disgust for so long.

I am so fucking fucking sick of neurotypicals* saying they are “a little [psychiatric or neurological disability]” in reference to one trait or mindset.

You might be saying: Sheesh, Mara. Isn’t that an overreaction? No. Not to me. Because it is a sign of an underlying issue: neurotypicalism due to the lack of understanding of psychiatric and neurological disabilities. Yes, mental illnesses are constellations of traits, and some people without the illnesses can have those traits. The same is true for neurodevelopmental disabilities like ADHD and autism. However, a mental illness is an ILLNESS, not a name for one trait or mood. A neurodevelopmental disability is a DISABILITY, not a descriptor for being awkward or flighty. No one says “I’m feeling a little pneumonia-ish”; they either have pneumonia or they don’t. So why do neurodivergent conditions get the “I’m a little [blank]” treatment?

Because, again, neurotypicals don’t understand. Specifically, they don’t understand the difference between variations in experiences among those with neurodivergent conditions and the fact that ND and NT people can share traits. Worse, NTs think of these traits in themselves—perfectionism (“I’m a little OCD”), flightiness (“I’m a little ADHD”), social awkwardness (“I’m a little Autistic”)—and they often think of how they can deal with those traits or how they can be trained out of those traits to the degree that they don’t cause serious difficulty. This is not the case for neurodivergent people. Oh, neurodivergent people can learn coping mechanisms. We can recover from some disorders and lessen our symptoms of other disorders. But we wouldn’t be ill or disabled if we didn’t have serious negative impacts on our lives either from our brains malfunctioning or society not being set up to accommodate us. (I specifically mention the latter because I don’t suffer from autism, I suffer from allistics and allistic society.)

Oh, and there are also the people who think being mentally ill is cute and quirky, which is why they refer to themselves as using saneist slurs or as having certain mental illnesses. This is so beyond the realm of making sense to me that I have nothing more to say about besides the fact that these people clearly also don’t understand mental illness. There are probably also people who think having certain neurodevelopmental disabilities is cute or quirky too—I’ve seen “lol I’m so ADD” way too many times—and that similarly befuddles me. Just. Just stop, people. (I think this is fetishization, which is not entirely the same as believing oneself to be “a little [ND condition]”, but it’s similar enough that I wanted to bring it up. I will probably tackle fetishization of mental illness in depth some other time, if I can summon any thoughts on the topic beyond incoherent keyboard-smashing.)

So why it so insulting for a neurotypical to say things like “I’m a little schizophrenic” or, worse, “I’m a little cr*zy”? Because like I mentioned, being neurodivergent comes with suffering. This suffering may come exclusively or almost exclusively from being marginalized by society—as a proud Autistic person, I could never say that being neurodivergent in and of itself causes suffering—or it may come from our brains doing horrible things that have a profound negative effect on our lives. Saying you’re “a little” neurodivergent is saying that you have experience with being neurodivergent, thereby appropriating how we live with society’s boot on our necks and are thrown under the proverbial bus even by progressives. It is not only appropriating our suffering from neurotypicalism, but our difficulties existing with our disabilities. If you’re “a little PTSD” after seeing a terrible film, will you have flashbacks that reduce you to a shaking, weeping wreck when you’re reminded of the film? If you’re “a little Autistic” because you’re not particularly socially adept, will you be unable to accomplish anything for the rest of the day after a difficult social interaction? (Not that all PTSD sufferers have murderous flashbacks or all Autistic people have no spoons after a difficult social situation, but I’m trying to make a point here: ND people have experiences that NTs do not.)

So when an allistic who is a little shy says they’re “a little Autistic” or a neurotypical who had an unpleasant experience says they’re “a little PTSD”, how my reaction be anything but “How dare you”?

The Carrie Fisher quote of the day has to do with how damn hard it can be to function while neurodivergent. This quote is specifically about bipolar disorder, but I think she would be okay with some of us other ND people taking inspiration from it too: “At times, being bipolar can be an all-consuming challenge, requiring a lot of stamina and even more courage, so if you’re living with this illness and functioning at all, it’s something to be proud of, not ashamed of. They should issue medals along with the steady stream of medication.”

 

*I am not referring to ND people with internalized neurotypicalism who say they’re “a little [condition]” as part of their path to accepting who they are. I’m referring to neurotypicals who think it’s completely acceptable to describe themselves as “a little [condition]”.

No, Neurodivergent People Are Not More Likely to Shoot Up Schools

Content/trigger warning: discussion of mass murder, slurs (censored), violent neurotypicalism

Every time a (white) person commits mass murder, a collective thought bubble appears over the neurodivergent community, or at least over the heads of those of us with “scary” ND conditions. The thought bubble reads: “oh, shit”. (No, I’m not saying we don’t care about the victims. We do. We just also think “oh, shit”.) We plan to lay low, stay inside, and/or try to pass for neurotypical as much as possible for the next few weeks. Because we know that, despite the fact that Murderous Bastard Syndrome is not in the DSM, brains like ours will be blamed for the tragic, violent act that took place.

We dread news reports that use neurotypicalist insults and slurs—“l*natic” seemed to be a favorite for the UCSB shooter—to refer to the murderer. We hear our friends and family members repeat those words when discussing the tragedy and feel that we can no longer trust those people. We glance around us in public, thinking about strangers “Does he know? Does she? Do they? Am I safe from these people?” because someone might figure out we’re neurodivergent and we will be labeled as dangerous. But we’re not dangerous. Our brains do not predispose us to cruelty toward others.

“But Mara, what about ASPD?” you might be asking. Well, sorry, but I’m not going to throw ASPD under the bus. (Actually, no, I’m not sorry. People with ASPD are my ND siblings. Oh, and “s****path” and “p*****path” are slurs, by the way.) If a person who happens to have ASPD commits murder, they didn’t do it because they were neurodivergent, they did it because they were an evil person. A diagnosis of ASPD does not mark a person as evil. No diagnosis marks a person as evil.

In fact, most mass shooters are neurotypical, and neurodivergent people are far more likely to be the victims of neurotypicalist hate crimes than we are likely to be violent criminals. (Not-so-fun fact: the rate of sexual violence against developmentally disabled women is over 80%. Is it any wonder I’m an angry disabled bitch? No, I’m not exaggerating. http://www.uwosh.edu/ccdet/caregiver/Documents/Pinkston/Handouts/pamelastatcssex.pdf) I know that the prevalent neurotypicalist idea that someone has to be [slur of choice] in order to commit a violent crime dictates the opposite, so here are some more links.

https://news.ncsu.edu/2014/02/wms-desmarais-violence2014/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1525086/pdf/wpa020121.pdf

https://autistichoya.files.wordpress.com/2012/12/crime-victimization-in-adults-with-severe-mental-illness-lina-a-teplin-et-al.pdf

http://www.dailykos.com/story/2015/04/05/1375335/-American-tragedy-A-staggering-percentage-of-police-shooting-victims-struggled-with-mental-illness

Those links are about mental illness, but you may notice I have been saying “neurodivergent” and not “mentally ill” in this entry. You might be wondering why. Well, because autism is not a mental illness, and Autistic people are also subject to the neurotypicalist belief that we are more violent than allistics. After the Sandy Hook shooting, suddenly everyone and their dog wanted to know how many murders were committed by Autistic people. To my abject horror, one of my favorite TV shows, Law and Order: SVU, even ran an episode based on the UCSB shooter featuring a killer with a (terrible, unrealistic, no seriously what was the director thinking) neurodivergent affect and whose father said he was Autistic. But like mentally ill people, Autistic people are actually less likely than neurotypicals to be violent; in fact, we are more likely to be targeted for violence than the rest of the population. Here:

http://apt.rcpsych.org/content/16/1/37.short

https://assets.documentcloud.org/documents/325971/crime-victims-with-dd.pdf

This was a hard entry to write. But I can’t very well have a blog about destigmatizing mental illness (and other ND conditions, considering how incredibly Autistic I am) and neglect that we’re blamed for horrific violent crimes. Why am I bringing this up now? Barron Trump.

Twitter and other social media networks are littered with jokes about how Barron Trump is Autistic and going to be the next school shooter. First of all, he’s fucking TEN. Let up on the kid. He didn’t ask to be born into that family. Second of all, there’s nothing wrong with being Autistic and implying such is incredibly ableist. Third of all, Autistic people are less likely to commit violent crimes than allistic people. I think the neurotypicalist cockcheeses making these jokes are also thinking of Barron’s boredom during political proceedings as flat or blunted affect, which is associated not just with autism but several “scary” mental illnesses such as schizophrenia, ASPD, and bipolar disorder. So I’m not concerned only about anti-Autistic neurotypicalism when it comes to this issue.

I’m tired. I’m so damn tired. I’m so sick of my brain being blamed for horrific violent crimes. It needs to stop.

I would like to acknowledge Autistic Hoya for providing many of the links used in this entry.

Carrie Fisher quote of the day: “Shame is not something I aspire to”.