The “Anosognosia” Label is Psychiatric Gaslighting Masquerading as Science
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.
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The pro-force psychiatry lobby is a hate group and should be designated as one. That, by itself, would slow the momentum of their ableist public policies.
This article, and the one comment that appears now are why rights for persons with mental health disabilities will not be taken seriously for a very long time and it’s a pity. As a consumer who worked in mental health I have seen people who’s illness kept them from being able to recognize they were sick. Being sick is not a reason for coercive care but when the person is unable to care for themselves or post a danger to self or others, there has got to be a way to protect them, their family and other’s. Your beef should not be with that reality but with the fact that our mental health services system resembles that of a third world country. If the community support that was promised when advocates supported Reagan’s shuttering of state hospitals had been fully funded and the system hadn’t gotten privatized and neglected, far fewer people would ever need to face involuntary treatment because. The system sucks. The people who work in it are no different from health care providers under Covid 19. The mental health of this entire country is suffering as people fall through the cracks. Ranting and raving about how evil people out there working within a messed up system are only makes all but the core “Mad in America” base roll their eyes and close their ears.
Thank you!!!!
I have many years working with people in the mental health field, but I’ve been retired from it for quite a while. I know the “language” used to identify and discuss mental health issues changes and efforts are usually made to be increasingly respectful. Which brings me to your “mad and disabled.” Talk about unhelpful and disrespectful labels! Is this some new trend in the field that I’m not familiar with?
What?? I was in board until you listed questioning part of the definition.
Any individual should have the right to question their diagnosis. Otherwise, this can lead to ill-fitting treatment, and an unchallenged power of authority, which in itself is dangerous on so many levels.
Good God, I’m all for the betterment of mental illnesses, a more open societal support of therapy/treatments, etc. but it’s clear a lot of people have a sick stick up their buns.
With the inclusion of something so abusive like that point, the leading authority on the field has lost a great deal of credibility to me.
I have been inpatient in a so-called Behavioral Health Unit. The experience is such an exercise in humiliation, isolation, condescension, and infantilization. It is conducted in a “safe” environment. There is such an absence of the basic human needs for love, trust, warmth, joy, music, understanding, etc.
As a person diagnosed with clinical depression, I find this article chilling. So many of us who have experienced a mental illness in our lives are objectivised as the “other,” as the “different” one because of our sometimes not quite acceptable reactions. So many of us are contributing members of society. I wonder when Big Pharma and their paid-for cadre of supporters will be coming for us, too.
As a parent of a son who has schizophrenia and has had to make the hard heartbreaking choices of commitals and med compliant procedures you do not have a damn clue until you live in this world. If I did not do this he would be dead ..homeless in prison who knows. I’ll take what I’ve done for my son as my only option
Yes!
Ignorant. This author has clearly never had a child or loved one develop the dangerous and debilitating condition of anosognosia.
Thank you! Wishing you and your loved one the best!
There is a balance that should be carefully considered here. The voices of individuals dealing with these mental illnesses should be heard and taken seriously. Orginizations like NAMI continuously advocate and educate. However, as for all individuals in a society, when a threat is posed to self or others, there is needed recourse. I am a mental health professional and I’m very aware that we have a flawed and underfunded system. However, medical management is sometimes necessary to the safety of the individual or others. The appropriate path here is reforming and funding the mental health system so that an individuals rights aee upheld while they receive help, so that there are advocates readily available if requested, and so that care is in a facility with the ability to properly treat both in group and one to one. I would also say that the labels the author uses carry historic stigma, and while the author may feel comfort with them, there is a negative connotation in referring to someone as mad. To impune that one is disabled is also labeling and that determination is one best left to the individual, if they both seek dispensation and are approved and is a designation only in that context and not in a broader context.
You’ve got to be kidding me.
“..coalition of family members, medical authorities, and cops..?” You clearly have no lived experience of what it is like to try to help a family member with SMI manifesting with anosognosia. Yes, the Western mental health care model is medieval. Yes the drugs are toxic and terrible. Yes, the idea and experience of coercion is heartbreaking for everyone concerned, but the sheer arrogance expressed in this article shows complete lack of understanding, consciousness and compassion.
Ask any parent of a child with this diagnosis to tell you about their lives and they will welcome you to a hell realm beyond description. To watch your beloved, gentle, kind child transform into someone unrecognizable, aggressive, hateful and hurtful who refuses help, medicine or care of any kind, risking not only their own lives as they end up on the street or incarcerated, but bringing down their families with them. I have been evicted three times due to the destructive actions of my son when he is off meds. Does this mean anything to you?
I am astonished by the ill-informed opinion expressed in this article. This heartless “activism” is the reason there are thousands of mentally ill individuals on the streets, separated from their families because the system provides no means of providing consistent care – to a large extent because of the those who lobby ideas such as those expressed in this article. Meanwhile, parents’ lives are destroyed, they go bankrupt, they divorce, develop ptsd and anxiety themselves, siblings of their ill child flee from the family in rage or overwhelm at the chaos of what was once a loving home. And you suggest this is an issue of LACK of love and respect? How dare you. How dare you.
I suggest that you spend just a little time researching what you speak to here. Talk to some families. Find out what they face. Do you know, the thinking you espouse here is why I have had to sit in a hearing, more than once, being forced to testify AGAINST my son in his presence, simply to try to get him help so his entire life would not be destroyed? As it is he is utterly dependent upon me financially, physically, emotionally – but at least he is alive, and not on the street or in jail. What will happen to him when I die? Who will care for him then, in a system that has no idea how to undertake true healing? The only thing we have, the only respite we have seen in the last decade of our family’s hell is when he finally was consistent with medication – and he fought it the whole way. Many parents give up, and I don’t blame them. It is an impossible situation, a horrific life sentence, often without solutions precisely because of the kind of divisive and defensive nonsense written here.
It’s the first duty of any author to know their subject before they write. I suggest you take down this article before it does more harm and spend some time educating yourself. There are enough broken hearts in the world. You are not helping here.
Elizabeth. Thank you for these comments.
Elizabeth, violence is violence, even in the name of love. As Judi Chamberlain once wrote, you can do many things to a person against their will, but helping isn’t one of them. I feel very deeply for your son. Please educate yourself about alternatives to the mh system if you’re really interested in helping him. Open Dialogue, in particular, is fairly promising for people who experience extreme states. Peer respites, peer support, the Icarus Project. It’s out there if you look.
Thank you. I too have fought to keep a mentally ill dear one alive, despite the fact that they resisted treatment. I fully acknowledge your pain.
I’ve been a serious mental illness advocate for over 25 years – beginning when my 23-year-old son became ill. I’m not as hopeful or idealistic as I was when I began advocating. In my opinion, today our mental health system is more dysfunctional than ever. Where do I find hope when the “system” is so divided – parents vs. children, psychiatrists vs. psychologists, consumers vs. providers, involuntary vs. voluntary, HIPAA restraints vs. family efforts to help, rights vs. danger to self or others, medical vs. holistic treatments, hospital beds vs. incarceration, provider unions vs. management practices, and state jurisdictions vs. federal jurisdictions. In 2013-2014, I kept a diary – to be a gift to myself and my grandchildren. I didn’t know that I was capturing the last year of my ill son’s life. After he died, I discovered he’d been making regular posts on Facebook. I added his comments to my own so his voice comes through loud and clear. I dare anyone to read my book and not see the struggle that loving parents go through to try and find help for their children. I dare anyone to read my book and not see the humanity and spirituality of individuals with serious mental illness. We won’t make any progress until the finger pointing and judgmental rhetoric about mental illness treatment (like that in this article) stops and all stakeholders learn how to work together. Sooner Than Tomorrow – A Mother’s Diary About Mental illness, Family and Everyday Life by Dede Ranahan with Patrick Ranahan. 2019 Gold (memoir) Nautilus Book Awards and http://www.soonerthantomorrow.com – A Safe Place to Talk About Mental Illness in Our Families.
Thank you for this incredible article, even if the pro-violence commentators cannot understand it. Violence is violence, even in the name of love. As a Mad, disabled woman, I wholeheartedly appreciated your concise and informative history of the term.
I’ve had a dear one attempt suicide so many times, their loved ones stopped counting. They did not believe they were sick, but that the command hallucinations ordering their death were real. Medication and prolonged hospitalization (yes, against their will) are the ONLY reason they’re alive today — the only reason their parents have them as a child and the only reason their daughters have them as a parent. My dear one is now PROFOUNDLY GRATEFUL to be alive, which happened BECAUSE they were treated against their will.
Yes, the rights of those with mental illness (of which I am one) are essential. So are their LIVES, which they are sometimes incapable of protecting. Those who truly care about them work hard to balance both.