vignettes from a psychiatric history on #worldbipolarday

I can tell you about all the time I have spent among the thyme
thinking of the dark Thames that river I’ve seen
both in TV shows and up close
its dark waters inviting me to sink in its good-bye waves and
ink its darkness on my arms and there is a river dell I see
when I close my eyes and wonder what Virginia Woolf felt in her river
a wolf in me is ready to jump through (s)now and fall through the ice.
Sometimes it’s frenetic energy with a voice of reason that
falls flatter than the paper thin hospital gown that I wore,
highlighter butterflies on my wrists.
I can (out)pace the world, wield
every word as a razor sharper than
the knives I wanted to use for an off label use.
I can be higher than the hills I once wanted to die on
and still see the rivers from on high.

When I was a child, I loathed my psychiatrist. He made me take tests every time I visited him. He condescended to me. He diagnosed me with anxiety and ADHD (accurate) and denied that I was autistic (inaccurate). He told me to focus, focus, focus, also calm down. I ended up throwing child toys at him. He put me on Clonidine first, then more ADHD meds.

I later found out he is held in high regard in the area of ADHD.

Seven years ago, I went on a potent drug ostensibly as an adjunct for a depression diagnosis at age 16. I don’t know what the psychiatrist knew about being angry all the time at home and aggressive at school. The drug gave me uncontrollable urges to move, far different from merely wanting to stim. My mother called the psychiatrist to explain that I seemed to feel like a “Mexican jumping bean.” The doctor prescribed a muscle relaxant.  

I later learned the side effect was akathisia and could have been much worse.

When I told a psychiatrist years later that I was aggressive in high school, he nodded.  “Yes, that’s why they put you on it.” He was an autism specialist a second hospital found and seemed to agree with the decision to put me on it.  “Well, now that you’re not aggressive, we could probably take you off of it.” Besides the issue I had with medicating for compliance, I already had tried to go off it several times. . No psychiatrist ever told me there would be withdrawal, even with tapering, that would last for months.

Each time was so hellish from withdrawal that I asked for it again.

In college, one time, I objected to eating outside on the campus quad on the grass – some of my friends wanted to. They went anyway. I ditched dinner and left the dining hall, almost in tears. I sat near my dorm building. Another friend found me there and asked if I was okay. I wanted to lie, to keep pretending that my brain hadn’t been trying to kill me for the past several months, to talk in circles around my friend and the thoughts. Instead “I don’t want to exist anymore” burst out like Gusher fruit snacks breaking open. My friend took me to our dorm’s resident assistant, who got me an appointment with the campus psychiatrist  for the next day. She upped the dosages of the medications that hadn’t been working.

I pretended things were fine after that.

Fourteen months since college graduation. I’d been at a new job seven months. Six months since the first psych hospitalization. One month since the second. There were still people who didn’t know about them. My mother, who was in town, mentioned I had been published. We were at a lunch table with relatives. But the publication was on my experience with those hospitalizations. My cousin asked if they could read it and I realized a hole had been dug, pushing the conversation in a dangerous direction. “It’s something I don’t really want relatives to read,” I said. I pushed dirt back in the hole the same way I used to pat down the earth around flowers and herbs in the garden, alone.

I pushed dirt back in the hole the way I once imagined filling my early grave.


The featured image for this post is a neurodiversity necklace from Spacerobot Studio for a reason. The need for neurodiversity and mental health movements to intersect is vital.

Not every person with a mental health disability has to see it through the neurodiversity framing, but we should be at times working together to push back against the narratives that frame autistic people, people with intellectual or cognitive disabilities, people with mental health disabilities, as inherently Other. Ableism manifests in different ways toward disabilities that have been categorized in different ways. But the end message is of Other.

As we approach Autism Acceptance Month, we should take care to remember that neurodiversity values all kinds of minds.

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Autistics in Mental Health Crisis (second in a series)

Autistics in Crisis Part Two: Crisis Aversion or Resources We Need

But knowing all those things I talked about in part one would not have kept me out of their ERs (preventing the crises in the first place). Knowing all those things would not solve the systemic issues contributing to crises. There are a lot of reasons Autistic people have crises. Quality of care if accessed, past or current trauma, isolation, a lack of community mental health resources, and other systemic barriers – often alongside co-occurring mental health diagnoses – combine to put people in crisis mode.

Both access to and quality of mental health care are issues for Autistic people. Many of the Autistic people who do access mental health care have reported pressure to “treat” their autism, and other mistreatment by mental health professionals. Even among professionals who do not seek to “fix” autism, Autistics’ distinct and various methods of expressing emotion and language can leave unprepared professionals at a loss and Autistic patients frustrated. There are also other factors. Some have difficulty navigating the health care system and lack support. A large number of Autistics can’t afford care for any number of reasons.

One Autistic writer highlights many of the above systemic barriers in a piece on autism and suicide (suicide crises are not the only mental health crises that occur, but Autistic adults without intellectual disabilities are nine times more likely than non-autistics to die by suicide). The author also discusses unemployment along with barriers to autonomy and social connection as contributing factors to Autistics’ high suicide rates. Here are some of the solutions the author offers:

We can be attentive to people who seem isolated and intentionally include them. We can check up on people who are known to be struggling… We can make our community welcoming to newcomers who desperately need the shelter of Autistic space. We can spread the word about autism-friendly mental health services… We can advocate for policies that support independence, like employment first and walkable communities.

For me, it would have been really helpful to have a 24-hour drop-in center or peer respite center (an alternative program where people in crisis can stay, staffed by people who have experienced mental health needs) somewhere nearby. There weren’t other options for me to stay safe. One study has indicated that peer respite centers result in better outcomes (for a variety of mental health needs) than psychiatric inpatient treatment, and there is a growing evidence base for supporting peer respite centers. 

Another resource would be a mental health phone (and text-based as Autistics can have a hard time with phones) line geared for connecting a person with services or other peer support when they are not at a crisis point. They would get connected based on level of need and which care they wanted. It would have a diverse staff to help make sure people did not end up with people mistreating them if they have a certain identity. Some similar projects, though not quite with that scope, already exist. One project called Project Warmline – people who need someone to talk to can speak to someone who has mental health needs – is in Oregon and has received state funding. Some other warmlines are listed here. It is not inconceivable that these projects could expand. 

There are significant gaps in community-based mental health resources. There is also a failure to address systemic barriers for Autistic people and improve quality-of-life research and supports by the largest sources of autism-related funding. These factors create a complex push into crisis mode for many Autistics. We can push for policy changes and support one another as fellow Autistics.

. . .

This is the second in a series of posts.

Autistics in Mental Health Crisis (first in a series)

Autistics in Crisis Part One: The Personal or What I Wish Professionals Had Known

In January 2016, I sat in a large chair in the ER of George Washington University Hospital (GW), with my gown tied on backwards because I had never gone to a hospital for feeling unsafe and suicidal before. The ER nurses thought I would know how to tie a gown; I didn’t. Nurses came and went, occasionally conversing with me or asking questions while I waited on the social worker. Once she arrived, the social worker said to me, “more like Asperger’s, right?” I had told the nurses I was Autistic.

She didn’t seem to believe me when I corrected her.  “I’m Autistic.” It made me uneasy even in my fight or flight panic mode. At least it was something I could actually manage to put words to through rote memory. I gave her a rundown of why she should call me autistic as I had said, and I don’t know if she took any of it to heart. She also seemed to blame being autistic for my social isolation. I wish she had known that correcting someone’s statement of identity because of how they present is not okay. I wish she had known that a lot of my social isolation didn’t come from autism itself, but from factors like adjusting the area, where I was living in the area, and a lot of non-disabled people being weird about autism and visible neurodivergence.

The fluorescent lights hurt and left me with dancing spots of color in my vision. The chatter of nurses around me, other patients calling out (just wanting to go home), and the ringing of phones and intercom announcements pierced my hearing. I cried from emotional pain, but also from being in sensory hell. Not being someplace quiet and dim made it even more overwhelming.

Later that year, in June, the ER was bright and loud at Georgetown University Hospital, but I did tie my gown correctly this time. They took me to a quiet room so I could be in a less overloading area to talk to the resident, but then they brought me back to the main ER section. I wish both places had known that it’s really hard for Autistic people and people with sensory processing issues to be in an ER. I wish they would have tried to find a way to reduce the sensory input, like giving me earplugs, and putting up a partial curtain to block the lights.

At Georgetown’s ward, they were a lot kinder and had different expectations, though I still felt confined, because it was a psych ward. There weren’t the assumptions about autism this time. They gave me earplugs to help with the lack of absolute quiet on the ward. In the ward at GW, yes I was in a depressive episode. No, I didn’t want to talk to a bunch of people I didn’t know in a place I’d never been before (with no Internet or cell phone access). No, I didn’t want to go to groups – they should have stopped pressuring me. I’m Autistic. Strangers and new places are hard for me. I wish GW had known that.

. . .

This is part one in a series of an unknown number of posts.

 

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.

“end the stigma” and ableism in the same breath

They mention Adam Lanza. They always mention Adam Lanza. The mentally ill need treatment, they say. They’ll end up like Adam Lanza. End the stigma, they say. Talk about your mental illness! We can end the stigma by you sharing your stories and struggles. Then they mention Adam Lanza.

Treatment is important. No one has access to treatment. Treatment is code for institutionalization. People with mental illness are in jail a lot! Like the man in the tree, who should be hospitalized indefinitely – the solution to incarceration is more hospital beds, they say.

Someone lies down on the floor in the hospital. They medicate him. Someone gets forcibly medicated, restrained, made fun of, and mistreated in the hospital. No one cares.  The faceless professionals give you a sleeping aid, a paper-thin blanket and an anti-anxiety drug, sometimes more. They give you a paper cup with water to take the pills with. The pills will keep you safe, they say. There are more pills. There have always been pills. The side effects don’t matter, historically and now. But – end the stigma of being in the hospital! Hospitals are good for people. They are friendly places that only want to help. They help! They can keep people from turning into Adam Lanza.

Your hospital bills come in the mail. They charge you over a thousand dollars with insurance. If you don’t have insurance, well, good luck. They charge you for the psychiatrist. They charge you for the therapists. They charge you for the ER visit. They charge you for general inpatient stay.  There are a lot of bills. They send you another hospital bill every week.

You can recover, they say! Just try harder. Be compliant. Doctors know best. No self-directed services. You don’t know what’s best for you, they say. Recovery should be your goal. Recovery is the only thing worth trying for when you’re mentally ill. End the stigma, they say. Talk about recovery.

You tweet into the #MHM2016 hashtag with a post you wrote as a mentally ill person expressing displeasure at the focus on access to treatment. You get exactly one retweet and two favorites. No one else notices or engages with you.

The members of Congress consider legislation, H.R. 2646, that will slash funding for programs to keep you from being homeless and restrict programs that protect your rights. Forced treatment is more important than stable housing, after all. They mean you belong in a hospital. They mention Adam Lanza.

Family members write articles called “I am Adam Lanza’s Mother.” They are always talking about Adam Lanza and treatment. Treatment is important. No one has access to treatment. Treatment is code for institutionalization. The Protection and Advocacy for People with Mental Illness (PAIMI) programs made my child homeless, they complain, they could have gone to an institution instead!

President Obama makes remarks about the San Bernardino shooters being sick in the head. The Obama administration declares May Mental Health Awareness Month. May officially is on your blacklist now.

Using People with Mental Illness as Clickbait Hurts Us

Bad articles on the problems we face can hurt and kill people. Write better.

Dear everyone, including myself: We deserve to be alive. We have the right to self-directed services and whatever works best for us. We deserve to be alive. Stay alive. Stay alive.
I have been on medication for a long time, first for ADHD, then anxiety, then depression. I have intermittently had periods of wanting to die since age 14. My most recent full-blown crisis landed me in the hospital. It was not a question for my friends whether they still wanted me alive, even as I lay bare every problem and feeling I was having. They wanted me alive.
Dear everyone, including myself: We deserve to be alive. We have the right to self-directed services and whatever works best for us. We deserve to be alive. Stay alive. Stay alive.

Evidence suggests that there is an increase in suicides following media reports of suicide, which is frequently referred to as copycat behaviour or as the Werther effect… The risk is thought to depend not only on reader characteristics,2,3 but also on media content. 35 


While the author of a certain xoJane article did not report the person’s death as a suicide, she left open the implication with a “supposedly” and the method of “supposed” death. She wrote an article that openly told us what we should do and tried to tell us how much she thought our lives were worth. It was a grim reminder of some people’s mindsets, but we do not have to bow to her desires.
With that knowledge, writers, know you are writing about people who deserved to be alive, and your audience are people who deserve to be alive, and your audience includes people who may already be prone to suicidal ideation. You are responsible for encouraging us to die if you write a sensationalized drama with explicit details. That is not a thing to take lightly or relish. It is a thing to make you hold yourselves accountable in your writing.
Dear everyone, including myself: We deserve to be alive. We have the right to self-directed services and whatever works best for us. We deserve to be alive. Stay alive. Stay alive.
What do we do instead? What do I do instead? My friend wrote on how to talk about suicide, and about taking care of ourselves and each other in advocacy-based communities, which see a lot of burnout and stress. We should demand that people write more responsibly, as per what my friend gathered information on. We should take care of each other when they don’t. I will try to stop writing so much about things when I’m off work. We should set healthy boundaries for each other but still show support.  

And writers should stop writing sensationalized dramas about mental illness, regardless of whether it’s about suicide. Writers of all kinds, this applies to you. These are our stories and our lives, and we want them respected by all, not showcased as some kind warning story, some kind of pity-narrative, some kind of revenge-story, some kind of sensationalized odd horror feature story. You can hurt people. Take some accountability. 
Dear everyone, including myself: We deserve to be alive. We have the right to self-directed services and whatever works best for us. We deserve to be alive. Stay alive. Stay alive.

People with Mental Illness Deserve to be Alive

Originally published on Medium

XoJane recently published an article about someone with schizoaffective disorder’s death being a blessing. Outrage ensued. The author’s name became anonymous. The editors of xoJane, at least temporarily, locked their Twitter profiles, then released this apology:

Screencap of: “I apologize for an article that was posted here yesterday, entitled “My Former Friend’s Death Was a Blessing.” I deeply regret the hurt that this article has caused and understand that it has perpetuated stigma and diminished the lives of people with mental illness. I am committed to immediately reviewing our vetting process to ensure that this experience has a positive influence on the ways in which we at xoJane present all women going forward. I appreciate all of you who took the time to let us know how you felt about this issue.”

I will not link to the archived version of the article right now. I would like to focus on what happens when you write about these topics like that. When you write that it’s better that people with mental health needs — especially people with particularly shunned diagnoses — die, this is what I know about you: I do not trust you with anyone. And I do not trust anyone who would post such a thing. I do not know the motivation of an editor allowing it to be posted. There are a multitude of reasons people have suggested, most of them related to increasing page hits and profit. A lot of people already think our lives have no value. They will continue to visit the page. Or, people outside the disability rights/mental health communities will not hear about it.

What happens when you write this way is a lot. It first of all tells people with mental illness — and again especially those with more shunned diagnoses — that people think we’re better off dead. It confirms some of our worst fears, our darkest, deepest worries. I do not think there is any data on this, but I suspect this way of writing about us encourages people to kill themselves.

It also presumes to know what the person with mental illness would have wanted. It presumes that we always think of ourselves as shells, better off dead, and that our suffering will always outweigh our right and desire to live. And indeed, some of us do feel that we are suffering a lot, and/or have suicidal ideation. I spent time in a hospital this January to prevent a suicide attempt! But writing that you know they’d be happy with the way they died and that being dead is better for them perpetuates in a very active way negative self-value and more fear and more, “Well, no one will miss me if I die.”

Then, it reinforces the narrative to other people, casual readers, that we are miserable, soulless unpeople. That with how uncomfortable we make people, we ought to be dead. Like I’ve mentioned in other pieces, we are at best inconvenient and uncomfortable to people. People are allowed to be uncomfortable with actions and statements, and assert boundaries — I have said awkward things to people in episodes of my cyclical mental illness and done my share of sometimes screwing up — but to capitalize off it and further the idea that we’re inherently bad and wrong and unpeople is unethical.