There is a class action lawsuit against Iowa over failure to provide legally-required and medically necessary mental health services for Medicaid-eligible children. As a mother of an adult son with severe childhood-onset mental illness, I have mixed emotions. I am angry that it took so long and is too late for my son, relieved there might finally be accountability, and hopeful that future children will not have the same experience. But I also feel like something is missing from the public discussion. How was the state able to get away with failing to meet federal mandates for so long, and how were politicians able to escape blame for underfunding and defunding these programs? Part of the answer is institutional gaslighting, through which the state obscured its failure to provide services. This gaslighting exploited and perpetuated an unnamed but long-present amalgam of mother-blame and mental health stigma.
Gaslighting has been getting a lot of attention lately. In fact, ‘gaslighting’ was the Merriam-Webster 2022 Word-Of-The-Year. Its usage goes back to the 1938 play Gas Light and its subsequent film adaptations to refer to the type of interpersonal abuse that occurs in the story. However, recently its meaning has broadened to include epistemic harms that happen within the context of structural power. Merriam-Webster Dictionary now includes the broad definition—“the act or practice of grossly misleading someone especially for one’s own advantage”—and provides examples of political and corporate gaslighting. Over the past decade, philosophers have been discussing and defining various forms of gaslighting, such as structural, cultural, and medical gaslighting. The Iowa case is an example of institutional gaslighting, or a manifestation of structural gaslighting at the institutional level.
Nora Berenstain defines structural gaslighting as that which obscures nonaccidental connections between patterns of harm and the structures of oppression that produce and license them (Berenstain 2020, 734). Further, she points out that this conceptual work can undergird gaslighting taking place on various levels, from the interpersonal to the institutional. Like individuals, institutions can gaslight through what they say (e.g., public statements and narratives shared through media campaigns). However, I add that institutions also have the unique ability to gaslight through policy, and in the case of states, through laws. Iowa used all of these tools to gaslight parents.
In March 2014, I attended a meeting at a public library, excited to hear about how Iowa’s recent redesign of its mental health and disability system would help my son. He was then 12 and unnecessarily institutionalized because we could not get the community services he needed to live at home. He had been on a waiting list for the Medicaid waiver which provided these services for just short of three years when his condition finally deteriorated to the point that hospitalization and institutionalization were our only available means to keep him alive. Parents like me were gathering around the state to attend such meetings, desperate to hear that Iowa would finally build a children’s mental health system and meet our children’s needs so they could live in the community.
However, as we learned from presentations at those meetings, all the redesign did for children was add Pediatric Integrated Health Homes (PIHH)—a team of a nurse, caseworker, and family peer support specialist who would help us navigate and coordinate services for our child. We kept asking for clarification—what services were they adding? The redesign was adding core services for adults; what about the core services for children? While most of our children were referred out to various forms of in-home and community therapies by their doctors, there were no such existing therapeutic services in the community. Parents were sent on wild goose chases, being told that we just were not looking hard enough. Parents already received this message from providers, strangers, and insurance companies (who themselves often gave out lists of service providers that no longer existed or accepted new patients). And now the state was confirming that view. Through policy, Iowa was gaslighting parents by saying that the problem was not a lack of existing services, but parental failure to navigate them. Their solution: PIHH.
Soon our fears were confirmed. All we had gained was another layer of bureaucracy in our wild goose chase, and this layer came with surveillance. Parents were now mandated to meet with their child’s caseworkers once a month and for lengthy annual meetings to report their own efforts to secure services, which brought further institutional gaslighting. Caseworkers would record the parents’ labor (and, it could be argued, co-opt that labor as their own in various state reports) without providing any new service options. If parents failed to attend these meetings, their children would lose the services that they had finally won (if only on paper) after years of waitlists. Desperate hope kept us believing in those papers—surely there would be a goose at the end of the waitlists. But that rarely if ever happened.
The state is federally mandated to include, among other services, intensive coordinated care for children receiving Medicaid. Iowa represented PIHH as such care, but it was neither coordinated nor care. It also was not intensive. Caseloads averaged 130-200 children per PIHH worker and turnover was constant; many times I was told that our caseworker had enrolled my son in programs with waitlists only to check back and find that caseworker had left months ago without ever having done so. If we did not respond immediately to their requests for monthly meetings, we were told we would lose those (on-paper) services. But getting them to respond to us is another story, even after months pass without contact. Parents spend a lot of time chasing down PIHH workers, fretting that their child’s case will be dropped or slip through the cracks. Iowa’s failure to provide federally mandated care is a serious structural injustice that is obscured by a policy requiring unhelpful meetings with overburdened caseworkers to navigate inadequate or non-existent services.
What doesn’t usually get included in public discussion is how parents are treated throughout the entire system. Not only do many parents lose employment, fall into debt as they try to provide these services themselves, and are forced to watch their children deteriorate despite Herculean efforts on their part to get their children help. All the while they are subtly—and sometimes not subtly at all—blamed for their child’s condition and lack of access to services.
We can see an example of this in a related case of institutional gaslighting through Iowa’s use of the CINA (Child in Need of Assistance) legal code. A Des Moines Register article outlines how the Woodley family’s adopted son Sam had significant mental illness and development disabilities. Sam’s condition worsened and he engaged in behavior that was dangerous to his siblings. His parents could not access needed community services because such services did not exist. So they turned desperately towards institutionalization, but even those facilities rejected Sam because they did not serve children of his low cognitive ability. Their caseworker told Sam’s parents that the only way he could get needed treatment was if they filed a CINA case. CINA is the part of the Iowa Juvenile Justice Code (§232.2) that removes a child from their home because of abuse and neglect and relinquishes parental custody. The law defines a child in need of assistance as one:
…who is in need of treatment to cure or alleviate serious mental illness or disorder, or emotional damage as evidenced by severe anxiety, depression, withdrawal, or untoward aggressive behavior toward self or others and whose parent, guardian, or custodian is unwilling to provide such treatment (Iowa Code 2022, Chapter 232.2(3)f), emphasis mine).
But the Woodleys were not unwilling; they spent a great deal of time and resources trying to secure treatment for their son. Rather, they were unable to do so—and not from an inability to navigate systems, but because such systems were not available. Ironically, it is not the parents who are negligent in this case but the state, which is federally mandated to provide and regulate such an infrastructure. Telling the Woodleys to file a CINA hides the ways in which the state is blameworthy by shifting blame to “unwilling” parents. Misrepresenting systemic injustices as failures of individual people is a common tactic of institutional gaslighting.
After filing a CINA, Sam was placed in a residential facility, which soon closed. Because the state (now Sam’s guardian) could not find an alternative treatment program, Sam was returned to foster care. Sam lost his loving family when he needed it most. And his family lost him in a desperate attempt to save him, which they had to do by legally stating that they were unfit parents. This is not an isolated case. Parents in our position are often encouraged to file a CINA by caseworkers—it happened to us three times, and I refused, realizing it would do no good when they could not specify what services it would get him.
While this institutional gaslighting affects caregivers of all gender identities, the dominant narrative on which it is grounded is specifically feminized. This narrative is structural gaslighting, or conceptual work that obscures how structures of oppression produce and license harm. There is a long history of mother-blame for childhood-onset mental illness. Freudian accounts focused on early childhood relationships, particularly how inherent problems with the mother’s personality and unconscious drives harmed the child. In “Mother-Blame in the Prozac Nation: Raising Kids with Invisible Disabilities,” Linda Blum shows how the shifting focus to neurological causes and pharmaceutical solutions did not remove mother-blame but changed its form: now mothers were blamed for failing to attain the services and medication their children needed.
Since Blum’s writing, discussion of ACEs (Adverse Childhood Experiences) has come to dominate the policy sphere. This literature focuses on the life-long impacts of trauma on mental and physical well-being, particularly on how trauma rewires a child’s brain, causing mental illness that did not previously exist. However, initial ACEs research only considered childhood traumas caused within the family. In other words, they only examined traumas caused by individual actors, not traumas caused by structural injustices such as seclusion and restraint in schools, the school-to-prison nexus, institutional racism and ableism, etc. Further, they only looked at certain individual actors: those in the immediate family. Given the context of patriarchy, blame for failing to protect a child from family trauma still rests with the mother (see Roberts, 196-202). Mothers are seen as both the ultimate and proximate cause of a child’s mental illness: her failure to protect the child from trauma causes the neurological condition itself by allowing the harmful rewiring of the brain, and her failure to remedy it through medication and services worsens it.
Mental disorders, like physical ones, have a wide variety of causes. Some mental conditions are genetic or are comorbidities of genetic conditions (e.g., Tourette Syndrome, Fragile X); some are caused by the physical environment (e.g., exposure to lead or neurotoxins); some are caused by physical injury (e.g., head trauma); and some are caused by emotional trauma. This is understood within medical and neuroscience research. However, in the policy sphere, ACE’s research has overtaken the narrative. I have sat on many state-level policy working groups and councils and find it shocking how reductive discussions of childhood mental illness have become—if a child suffers from mental illness, it is assumed that something is wrong with the child’s family life. It is noteworthy that neuroscientists and neurologists do not sit on these boards.
This version of mother-blame erases mental illness with non-traumatic etiologies from policy discussions and combines mother-blame with the stigma of mental illness in a particular way. In Stigma: Notes on the Management of a Spoiled Identity, Erving Goffman coined the term “courtesy stigma” to describe stigma individuals face because of their proximity to stigmatized individuals. They do not themselves have a stigmatized characteristic such as mental illness, but experience stigma due to their proximity to the person with that characteristic. The closer the proximity, the greater the stigma. The mother is stigmatized not only by her close proximity to her child’s mental illness but also by being portrayed as its very cause.
This amalgam of mother-blame and stigma does the conceptual work needed to support the institutional gaslighting discussed above. The public—who have had this amalgam entrenched in their thinking through pop culture, news media, movies, and social media—as well as educators, therapists, and social workers—who encounter this paradigm in their professional training—readily accept the narrative that the problem is parental failure to navigate services. After all, they have been taught that childhood mental illness indicates parental failure. Parents internalize this idea and fill their time (to the harm of their other children, family income, and personal well-being) with the frantic search for unavailable services. Meanwhile, the state gets out of funding its obligations, all without political fuss or accountability.
Institutional gaslighting harms parents by causing them to doubt their own perceptions, experiences, and skills when trying to assess services for their children. It makes them dependent on the state in an epistemically violent way: their status as knowers is diminished (an epistemic oppression), their testimony receives little uptake (a testimonial injustice), and the narratives available shift the blame for institutional failures to their parenting (a hermeneutic injustice). They are left to depend on PIHH for any hope of services for their child. Institutional gaslighting not only harms parents but also benefits the state. The state can shirk its obligation to children and families by making it look like the problem is not the system but the parents. This narrative exacerbates the injustice and makes it harder to fight. It also exploits and co-opts parents’ labor, which provide the bulk of children’s needs that are legally the obligation of the state.
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Tammy Nyden
Tammy Nyden is Associate Professor of Philosophy at Grinnell College and co-founder of Mothers on the Frontline, a non-profit organization working towards Children’s Mental Health Justice and Caregiver Justice. Her early work is on early modern philosophy, particularly Spinoza, and is currently working in the areas of epistemic injustice and relational autonomy.
thanks for info