What happens when you're "the community": part 2
NEW PARADIGM JUST DROPPED!
(If you haven’t yet read part 1, please do.)
I’ve kept this all in out of fear of being rejected by the professional and personal groups I identify with most, but if we’re serious about doing better for people living with serious mental illness (SMI), we have to be willing to challenge the restrictive orthodoxy. (Promise not to send this to your brutally conservative dad, okay? ) We have to be willing to admit that deinstitutionalization failed. I don’t want to join a different cohort. I want to take mine with me.
I started getting the feeling when I was spending all of my time outside of work in leftist circles in Austin, with fellow social workers as well as activists engaged in mutual aid networks. It was a pressure in my temples when I could feel the conflict building.
Something awful would happen to someone with psychosis. In a large Texan city with a housing crisis, it could be any of the possible bad outcomes. Activists like to imagine alternatives that fit into their understanding of the world. We’re quick to make a strategic statement. But something was off. The same people would say “I can’t believe someone called 911 on him”, and then “No one ever thought to help him when he was clearly struggling”.
Then “They hospitalized her against her will. It’s incarceration.”, then “They let her go after she said she was going to hurt herself. What did they think was going to happen?”.
Then “It’s not delusional for a Black American to think they’re being targeted”, and then “Why didn’t anyone protect him when he was obviously paranoid”
Then “Because she was homeless and didn’t have insurance, she couldn’t even access the medication that she desperately needed!”, then “Her truth is just as valid as yours. Just because you don’t have the same reality doesn’t mean hers isn’t just as legitimate”
Then “my neighbor is always screaming at me that I’m following and trying to kill him and I don’t feel safe in my building”, then “his controlling family is forcing him to take medication against his will to stay in their home!"
It compounded until I had whiplash from rushing back and forth from my own contradicting beliefs. I would be so sure that my allegiance was to my 18-year-old client whose choices I honored. Then his mom would call me understandably terrified, in tears.
It’s not that one part is true and one is false. It’s that our inability to synthesize them is killing the people whom our silence is meant to protect. It’s a respectability politics with unimaginable consequences.
I lied before when I said there wasn’t any treatment in this country. There’s some.
There are relatively well-resourced programs that can only be referred to through the criminal justice system and hospitals. I was lucky enough to work for an FEP (first-episode psychosis) program that took voluntary referrals, but for self-referred clients, you might remain on the years-long waitlist until you age out of the program. But if your brother calls and says you tried to kill yourself or you like, got arrested for arson, you could be bumped up to the top due to the urgency of the situation. For specialized programs, the inclusion criteria for the treatment of severe mental illness requires the violence to the self or others that we claim doesn’t really happen. We have to reconsider the meaning of coercion. Is our current protocol really non-coercive, or is it evidence of a society that refuses medical care until it’s too late? Are we not coercing people into desperation? While the general public may not be able to articulate the motivations of the systems that implement such programs, most social workers know deep down that the prioritization of self-determination is not a humanist decision, but a PR spin on a broad economic choice.
But as a layperson, you don’t have to know anything about why. You don’t have to have ever heard of the Mental Health Act of 1963 or SAMHSA (Substance Abuse and Mental Health Services Administration) or even Medicaid to know why acknowledging the dire consequences of untreated severe mental illness is dangerous to people living with severe mental illness. If you’re a decent person, when you’re confronted with any rhetoric about mentally ill people as a demographic, you immediately recognize it as propaganda and deny it outright. Because even if the anecdote is true, our current civic infrastructure is such that the function of the discourse can only further harm people living with severe mental illness. Because in terms of funding, our current civil infrastructure is comprised of prisons and police. You don’t have to know how we ended up here to know that in this country, there is no clear path to recovery. There is only not condemning millions of people to jail. Being left on your own could only pass for the best option in a country this hopelessly individualistic and punishing.
We pretend that our cities are not bountiful with people on the brink of disaster who are capable of desperate acts, even if we ourselves have been victims to a desperate act or two because the only options are doing nothing and being complicit in the disposal of a human being. Hell, if someone is remotely marginalized America doesn’t need an excuse to lock them up, deny them housing, deny them jobs, deny them empathy. What are you gonna get from complaining about harm that happened to you, anyway? Does punishment heal anything? You know you’re not the real victim when harm is a consequence of a lack of healthcare. Your respectful silence may not make anything worse, it doesn’t change the mechanics of the cycle.
The good facts and the bad facts
When I worked on a first-episode psychosis team for the county mental health authority, I told cab drivers that I was a business student. I couldn’t bear to talk about the collapse of the social safety net that everyone just called “the homeless problem”. I would perform offense at family members who would dare to vocally worry about my safety* at work or in my non-work-related activities in which I interacted with the mentally-ill people they feared. I didn’t want to add fuel to their fire. But they weren’t always wrong. I moved with the agility of a dirty politician on a press tour. Before I was done with them they would know that people with serious mental illness are more likely to be victimized than victimize anyone else. They are more likely to hurt themselves than hurt anyone else. That hearing voices and seeing things others don’t is understood as a religious experience or a gift in some cultures. That some people do just fine, moving through a self-directed life while experiencing symptoms.
Those are indeed facts! But those are not all the facts. I didn’t tell anyone that (depending on your sources) between 35.5% - 45.5% of people with severe mental illness are untreated, that SMI is frequently progressive, and between 57-98% of people diagnosed with schizophrenia have anosognosia (lack of insight about their illness) and are at times unable to make safe, informed decisions for themselves. I generally believe in the social model of disability, but y’all, what was being described to me usually sounded like being trapped every day in the scariest movie I had ever seen.
The thing is, I have the “good” facts memorized not because they are the most helpful and humane, but because they are widely publicized and the most convenient for individuals (such as your state representatives) and agencies (such as HHS) who would be charged with overhauling the treatment of SMI in the United States. If we are dedicated to the narrative that everything is fine and memorize the script, we don’t have to restructure our social service systems. Serious mental illness exposes all of the cracks in America’s foundation.
They tell us (to tell everyone else) that it’s actually fine. People with mental illness are not dangerous, peer support is the most empowering treatment method, psychosis is not inherently negative and can even be positive for some people, and you should really be saying “houseless neighbors” not homeless people what the hell is wrong with you it’s so classist to imply that your home is more legitimate that her tent. Nothing to see here!
There’s nothing virtuous about these half-truths. They aren’t shields you can wield against stigma. (It should be a dead giveaway that the “good facts” are in bad faith when a high likelihood of suicide is passed off as a neutral outcome.) We could have a society in which all of these truths could be admitted and it would be okay because people would have substantial support and various options. Would it be problematic to say that someone in psychotic mania will need help even when they swear they don’t want it if we had humane treatment options (that could even be consented to before it is needed)? In a country with accessible treatment, it wouldn’t be dangerous to admit that people with untreated SMI are more likely to engage in violence, because the prevalence of violence inflicted by people with psychosis drops gradually to rates close to those of the general population with medication management. It would be okay that sometimes (a small percentage!) of people have command hallucinations compelling them to harm someone else if admitting that this was occurring guaranteed urgent healthcare, not our collective choice between ignoring it (until it got worse) or incarcerating them, thus making it worse (but in jail!).
When state-funded psychiatric beds decrease by 97% in a matter of decades, do not assume that crises are being handled “in the community”. Assume they are not getting handled. Assume that someone who comes to the ER for care will be turned away or wait in an ER bed for days until someone else on a psych floor is discharged. Assume they will be pushed out in 2 days so the next person can be admitted. I graduated in 2018, and there was no mention of this extreme system deterioration, but I did hear a lot about consumer peer-support models being not only empowering but extremely effective. They’re not. They’re just a hell of a lot cheaper on the front end for state and federal governments than beds, psychiatrists, therapists, prescription drugs, and clinics. (If you’ve ever seen agencies claim evidence for the superiority of the peer-support model, a meta-analysis demonstrates a serious risk of bias in studies that paint the peer-support model in a positive light, especially in the domains of blinding and reporting bias. Check and see if the report has been created and presented by trade associations that provide paid peer support.)
I want to be as clear as I can. I love a lot of people with SMI. I don’t think a diagnosis should dictate the level of civil rights available to someone. I just don’t think that healthcare providers are the actual forces limiting autonomy. For example, every therapist I know would agree that there is absolutely no reason someone with an SMI diagnosis should be compelled to take medication if:
they make that decision in conjunction with their support systems and medical team
during a period of insight
if they demonstrate a pattern of safety to themselves and others
have all of their basic needs met
with a variety of real treatment options along a true continuum of least to most restrictive with the opportunity to change course at any time
Then by all means, *obama voice* if you like your referential delusion, you can keep it!
It’s really not different than other American healthcare system atrocities. We all know someone without insurance who had to ignore their health problem until they ended up in the ER. Maybe they had to get surgery or stay for several days or got stuck with a 5-figure bill. The ER is full of people who didn’t have to be there if there were able to get preventative care and ongoing help for chronic health problems.
And if it seems like protecting someone’s right to suffer without help on the streets is a better choice than allowing them to be thrown in jail, it’s because it is. Nothing guarantees a cycle of homelessness more than a string of unpaid fines, a criminal background, and the repeated traumas of incarceration.
This essay is about to end without a deep dive into IMD exclusions and medicare waivers or a treatise on guardianship and its alternatives. I’m really not a legislative thinker. All those numbers stress me out. I fell asleep in policy class most days.
But I can speak to the personal. What I felt and how I have come to make sense of the chaos I felt alone in every day. I burned out for the same unnamed reason so many of us do. As a clinician unafraid of suicidal ideation and psychosis, I was made to be an entire community’s worth of support for people who had extensive needs, to fill the entire gap between nothing and the ER. As part of the radical social work/anti-oppressive clinical practice/harm reduction faction(s), I felt I was always choosing between limiting my clients’ autonomy or putting them in the driver’s seat of a vehicle with no brakes, waiting for the crash. I was not put in this position by my supervisor, employer, clients, or clients’ families, but by the austerity-based American healthcare system. It is nearly impossible to access treatment for serious mental illness before a diagnosis is proven through harm to the self or others. If/when it is granted, treatment volume and standards are not sufficient to even pretend that people will recover, even though they can, thus mental illness is unnaturally forced into a diversity paradigm. The ideal of autonomy is glorified because of an economic propaganda campaign, not because it is actually the best we can do. If we don’t want people to be involuntarily hospitalized, we have to fight for options before things get serious. If we want to fight for treatment expansion, we have to drop the respectability politic and admit that the state of things is unacceptable. We can imagine a better system in solidarity with people who live with SMI. We just have to be brave enough.
Next week, I’m publishing an FAQ style “part 2.5” preemptively deflecting from pushback, and criticism I might get based on the common current schools of thought regarding mental health and social justice (just kidding, but I promise I will be able to provide the most concise possible breakdown through the weird-little-conversation-with-myself format). Then we’ll wrap up with a case study and some models from different perspectives. Thank you so much for reading this far.
So make a psychiatric advanced directive, stop pretending everything is fine, and get some sleep!
(A note on safety because I’m so scared that I somehow still malign anyone: the reality is that I would have been perfectly safe if I had stayed within the parameters of my given role(s), but that’s not what normal people do when faced with human suffering. I can’t stand to see people lacking basic needs, and I knew that therapy on an empty stomach or 2 hours of sleep was useless. Insulting even. Because I was the only “community” to a few people, I drove people to the hospital who were in crisis, I picked up medications from the pharmacy if they couldn’t get there before closing time, and I put myself in harm’s way a few times when someone was in a desperate situation I could alleviate, even when I “didn’t have to”. Good supervisors would tell me “you can’t be everything for anyone” but I still acted like I could. Because I had to. Because we have to.)
Here’s the next bit:
Wow. Let me know when the book-length version of this essay is available.