Content notes: mental illness, forced treatment
Since the late 1990s, a movement composed of medical professionals, cops, and caregivers has advanced a strategic campaign of psychiatric gaslighting designed to shift public policy steadily towards canceling the rights of mad and disabled people.
The gaslighting takes the shape of the use of the term “anosognosia,” first coined in 1914 by neurologist Joseph Babinsky to describe the experiences of folks who had experienced a physiological brain injury, but weren’t aware. Over the last twenty plus years, the definition of anosognosia has expanded far beyond its original intent to include those who are said to “lack insight” into their schizophrenia diagnosis and refuse care when offered. The term has been popularized in large part by psychiatrist E. Fuller Torrey, who in 1998 founded the Treatment Advocacy Center, a lobbying group and think tank that is frequently consulted by the media. Anosognosia language gained further legitimacy in 2000 when psychiatrist Xavier Amador published the popular book, I am Not Sick, I Don’t Need Help!: How to Help Someone With Mental Illness Accept Treatment.
Anosognosia is now officially considered to be a symptom of schizophrenia in the Diagnostic and Statistical Manual of Mental Disorders (DSM), the “bible” of psychiatry. Disagreeing with medical opinion is one of the defining characteristics of anosognosia. Here’s one definition from Healthline: “Anosognosia is a lack of ability to perceive the realities of one’s own condition. It’s a person’s inability to accept that they have a condition that matches up with their symptoms or a formal diagnosis. This occurs despite significant evidence of a diagnosis, and despite second and even third medical opinions confirming the validity of a diagnosis.”
According to this logic, challenging, questioning, or outright rejecting the pronouncements of the medical-industrial complex (MIC) is the proof that you are ill, irrational, and possibly dangerous. The only possible way out of this trap is to agree with the medical assessment given, and to accept the treatments dictated.
For folks living with a variety of health conditions and disabilities, following a treatment plan in the context of respectful care can be empowering and life-saving. But with schizophrenia or psychosis, illness always is conflated with the perception of dangerousness, and the threat of force being used is ever-present.
Anosognosia is the newest iteration of the MIC’s long history of pathologizing and gaslighting people for their own oppression in unjust, ableist, and sanist society. I place anosognosia within the realm of pseudoscientific diagnoses like “drapetomania,” given to enslaved people who wished to be free; or the diagnosis of schizophrenia which was weaponized against Black Power activists as punishment for their rage in the 1960s and 1970s; or the way in which queer and trans and gender nonconforming folks were pathologized for decades, until activists pushed back and demanded change.
There was nothing scientific or medically sound about any of these diagnoses or labels; they were clearly intertwined with what prevailed in the power structure of the time. Anosognosia labels work in the same way, considering the vast power imbalances and potential for harm with doctors, family members, and cops on one side, and mad and disabled people perceived as “dangerous” on the other.
But the true danger lies in anosognosia language that is routinely used as the justification for eroding mad and disabled people’s hard won civil liberties and health privacy protections. This “lack of insight” is the lever used by the coalition of family members, medical authorities, and cops to call for adopting a reduced “need for treatment” standard for involuntary care; expanded conservatorship; and more money for involuntary outpatient commitment, euphemistically referred to as “Assisted Outpatient Treatment (AOT).”
Psychiatrist Dinah Miller notes that “Anosognosia has become politically loaded: when someone uses it, by extension, it has come to mean that they are in favor of legislation to make it easier to treat patients against their will.”
AOT orders have disproportionately landed on mad, unhoused, and disabled BIPOC, as do all restrictive and coercive policies deployed by the carceral state. According to a 2014 report by the Maryland Disability Law Center et al, “Studies on outpatient civil commitment conducted in North Carolina and New York revealed that people of color and those living in poverty are disproportionately impacted by involuntary community treatment orders.”
Psychiatric oppression is usually draped in the language of help and concern. But when folks talk about expanding AOT, that is code for expanding involuntary medication (which may be all the “treatment” a person receives through such programs).
Coming from a harm reduction perspective, I am not anti-meds, or anti-drugs, or anti-drug use. On the contrary: people should always be able to access whatever drugs or medications they find helpful in managing chronic conditions. Free and fully informed consent is paramount.
But I believe that involuntary medication, which often consists of heavy-duty long-acting injectable antipsychotic medications, constitutes a human rights violation. The experience of receiving court-ordered injections or other unwanted treatments is reported as traumatic by the vast majority of mad and disabled people.
Furthermore, antipsychotic drugs have been shown to induce a number of serious metabolic disorders when used over the long-term; to have diminishing effectiveness in reducing unwanted symptoms; and to result in a cascade of adverse effects that reduce the lifespan of mad and disabled people, and elders in nursing homes forced to take them.
It’s also important to understand the broader context of calls to forcibly medicate people with so-called anosognosia. Government and industry interests have been pushing the expanded use of long-acting injectable antipsychotics, which presumably has something to do with the Pharma lobby, the so-called patient and provider advocacy groups that it bankrolls, and the politicians that it buys.
And the persistence of anosognosia rhetoric is also having an increasing impact on public perception of mad and disabled people. A 2018 study in Health Affairs found that over the last few decades, the American public has increasingly come to associate the diagnosis of schizophrenia with dangerousness, and is also increasingly in favor of expanding forced treatment laws.
Experiences of psychosis or altered states can be genuinely confusing, frightening, and misunderstood by people and those around them, especially in a society that only knows how to make sense of them in a narrow, medicalized framework. Folks having such experiences should have access to support without the use of coercive, restrictive, and traumatic interventions.
For example, Dialogic approaches are an innovation that support people voluntarily in the context of their chosen networks, and have phenomenal outcomes. Peer-to-peer crisis supports and respite houses balance rights and accessible support. And for decades, the Hearing Voices Network has held space for people around the world who hear voices, see things others don’t see, or have unusual beliefs to find understanding and community inclusion, and to begin to heal from the effects of psychiatric abuse and gaslighting.
Let’s keep calling out and resisting the deployment of anosognosia language against mad and disabled folks. Treatment based on outdated models of coercion and paternalism is incompatible with meaningful help or human rights.