an exploration of autistic mad pride: part one

Introduction:

exploring the possibilities of neurodiversity, mental health, and autistic mad pride intersections

Recently, I found an article on Medium talking about schizophrenia fitting into neurodiversity, which got me thinking about how mental health more broadly fits into neurodiversity.

There are a lot of people I know with mental health disabilities/[a person’s preferred terminology] who dislike the idea of categorizing mental health things as neurodivergence, who feel that claiming mental health stuff as neurodivergence by definition means claiming it as an intrinsic part of the self that can’t be separated from oneself- and thus can’t be recovered from.

Currently I’ve been trying to think about and sort out the various models of mental health. For instance, the recovery model as it was conceptualized and formed after the period of large-scale, long-term institutionalization talked in part about recovering from the effects of society.

Then a lot of what “recovery” means, as I’ve seen it discussed, not just recovering from society’s effects, but primarily recovering from the effects of the mental health disability. I do know people with mental health disabilities who support this idea of recovery insofar that it means that they experience a significant reduction of symptoms along with developing coping strategies for symptoms.

However, as a disclaimer, I am not in fact trying to tell people that they cannot want to recover – experience a significant reduction in symptoms etc. – from their mental health disabilities.

But I think the recovery narrative, if pushed onto us by others, is, if not harmful, not exactly beneficial, because then it is not a choice. And a lot of times that’s the only narrative people are given.

And then a lot of autistics have co-occurring mental health disabilities, as I’ve discussed in this AACC presentation (PDF) and in this blog post series (the transcript for the AACC presentation is here as a PDF). And the autistic rights movement is rooted in neurodiversity and neurodivergence as identity. 

Then the questions I have are, that I will address in blog posts to come:

  • Part Two: Should mental health disabilities be fit under the category of neurodivergence as identity? (I can’t answer this for everyone, but I can answer it for myself and the way I see it).  
  • Part Three: Why haven’t the mad pride, mental health rights, and autistic rights movements intersected nearly as much (to my knowledge)?

 

Carrie Fisher (Princess Leia) Wrote Books and Had a Service Dog

carrie-fisher

[Image description: Three images related to Carrie Fisher. From left to right, Carrie Fisher wearing glasses and kneeling next to her service dog, the French Bulldog Gary, at a red carpet event; Carrie Fisher dressed in white as Princess Leia with her iconic hair buns, surrounded by Stormtroopers; and Carrie Fisher’s book Wishful Drinking, which has her name, the title, and an image of Carrie Fisher with hair buns facedown on a table with a martini glass in her hand.]

In high school, it was mentioned to me in passing by someone that Carrie Fisher, whom I knew as Princess Leia, had bipolar disorder.

I shrugged, and said, “Oh, okay.” She was still Princess Leia.

Sure, depressive episodes and generalized anxiety made up a majority of my days, a damp humid cloak like the Georgia summers I liked to wander down the streets in – alone. An autistic, depressed, anxious wreck, isolated and considered socially unacceptable. But Carrie Fisher was just Princess Leia, right?

I never thought she meant much to me besides her role in Star Wars until a short while ago. In college, I became invested in disability rights and later, after my first and second hospitalizations in a psych ward, mental health rights as well. Each discharge from the hospital read that I had major depressive disorder, not bipolar disorder. Each hospital had only seen me for suicidality. They didn’t see the times I felt higher than the hills I once wanted to die on, and faster than the too-fast DC Metro trains. I find the Metro a relatable metaphor. I too sometimes go too fast, experience frequent malfunctions, and occasionally derail.

But I find her more than a relatable metaphor. Carrie Fisher was a bipolar person who dealt with substance abuse issues. She was often considered socially unacceptable. She openly spoke about her mental health disability, and substance abuse issues (which were in part an attempt to keep her manic episodes in check). She was open about her dog Gary’s role as a service animal and took him to public events. And she was also the actress who played Princess Leia, a mother, an author, and a script doctor who edited scripts.

She was Princess Leia, and she was also an outspoken mental health advocate.

I owe her a lot.

For talking about about everything in the open. For being Princess Leia but also someone who employed a great number of coping strategies for her mental health, and talked about them. For sometimes being considered socially unacceptable.

For showing me that she, Carrie Fisher – Princess Leia – was as outspoken in real life as she was on screen. For showing me that it’s possible to be vocal about personal struggles and what you don’t like – and what is good – about your brain and yourself.

Staying Silent During National Suicide Prevention Week

I watched people write posts and tweet with the hashtag with a bit of muffled, tamped-down fascination. This was my first National Suicide Prevention Week after being twice-institutionalized in one year. The hospitalizations weren’t my first times being suicidal. But National Suicide Prevention Week had always been a dull echo – mental health hotlines plastered over social media and onto the bathroom stalls at my college – much like the suicidal ideation that was constant static in my mind, sometimes flaring up like microphone feedback.

* * *

But this is not a post about my journey through suicidal ideation and tendencies.

It’s about how National Suicide Prevention Week allows society get away with mistreatment, discrimination, and other systemic factors by placing responsibility square on the suicidal individual, and then expects us to tell our suicide survival stories like we’re in a spectator sport, rather than bearing witness to society’s shortcomings.*

Yes, people with mental health needs seem disproportionately more likely to die by suicide (I looked long and hard for these suicide rates on a national scale, but only found data that “the consequences of undiagnosed, untreated, or undertreated co-occurring disorders can lead to a higher likelihood of experiencing homelessness, incarceration, medical illnesses, suicide, or even early death,” of course without talking about societal factors). But discrimination has a negative impact on mental health, and many populations experience imbalances in suicide rates. (What I mean by societal factors are: discrimination and mistreatment – including incidents that seem small, part of everyday life, and/or seem more overt and blatant).

What’s to go wrong with preventing suicide, though? I know suicide results in lost lives. I know it hurts the living. I know there’s a reason people close to me cried when I admitted myself to the psych ward both times for suicidality. I know how they would have cried further had I actually died. I know people with mental health needs die by suicide and their deaths could have been preventable through access to certain care.

But… SAMHSA saysIdeally, these [suicide prevention] efforts address individual, relationship, community, and societal factors while promoting hope, easing access into effective treatment, encouraging connectedness, and supporting recovery.” That sounds great to most people. Parts even sound nice to me on the surface. But the “community, and societal factors” parts feel like they’re still in the “ideal” stages. One of the largest charities involved in suicide prevention, the American Foundation for Suicide Prevention (AFSP)** focused on firearms and suicide, emergency department screenings and primary health care screenings as part of their Project 2025 model for National Suicide Week Prevention 2016. None of these include factors other than individual (that match the factors I’m talking about). None of these come near addressing mistreatment, discrimination, and the like. None of these address communities often impacted by trauma and/or high rates of mental health disabilities (in part due to mistreatment and discrimination).

Mistreatment and discrimination also preclude many from seeking mental health care. As I’ve said before regarding the public conversation on mental health: “[it] doesn’t factor in the many other reasons why people might not seek care. These reasons include… forms of bigotry in health care. Medical professionals are not exempt from casual or blatant forms of bigotry.” If no one addresses causes of suicide in terms of the toll of discrimination and mistreatment on individuals and communities, it is my opinion that we will not be able to reduce suicide rates as much as we want to. Further, not addressing systemic issues allows society off the hook entirely (which is a problem I have with a lot of disability and mental health awareness campaigns).

* * *

Do I believe in suicide prevention? Yes. But I believe in comprehensive suicide prevention. Suicide prevention must encompass both the individual and society. I believe in suicide prevention that reduces the amount of discrimination and mistreatment in the mental health care system. I believe in suicide prevention that works as more general mental health advocacy to provide stable housing and community services as opposed to institutionalization and lack of in-home settings. I believe in suicide prevention that addresses whole people and their relationships and communities and the impact society has on them.

What would my vision of comprehensive suicide prevention look like? My vision would look like addressing individual needs through crisis support and preventing a crisis from even happening, but also addressing societal barriers and discrimination. It would look like 24-hour drop-in centers staffed by peer support specialists. It would look like at-home services as opposed to locking someone in a hospital. It would look like collaboratively working for many forms of lessening discrimination against various marginalized people through multiple methods of advocacy, including direct action and incremental change. It would look like supported housing and late-night cafes and be a broad approach.  

Do I believe in suicide prevention? Yes. Do I believe in this particular awareness campaign of suicide prevention? Not as much as I could. 

* * *

*I do not speak for all people with mental health needs. I do not claim to. I know some people with mental health needs find these campaigns to be enough and/or to be the most appropriate thing. My opinion differs.

**I must note that I am not, in fact, wholly against AFSP, and that I don’t want to sound like their approach will do nothing at all. I just argue that it’s not enough.

I do welcome thoughts on this blog post, but I will remind you of my comment policy.