Care Gone Wrong: Bad Moms, Fake Disabilities, and Imagined Illnesses

Care Gone Wrong: Bad Moms, Fake Disabilities, and Imagined Illnesses

At first, it seemed impossible that Gypsy Rose Blancharde had murdered her mother. Dee Dee appeared to be her daughter’s most outspoken advocate. She was the strong and devoted caregiver that Gypsy Rose, who appeared far younger than her 23 years and spoke in a Minnie Mouse squeak, required. Or so it seemed.

Dee Dee was found stabbed to death in June 2015 in the pair’s home in Springfield, Missouri, a churchgoing city at the edge of the Ozarks. Until the murder, Gypsy Rose was believed by all who knew her to have an array of disabilities and health issues, ranging from muscular dystrophy and epilepsy to intellectual disabilities, severe asthma, and digestive issues. She had a feeding tube, used a wheelchair, and had undergone multiple medical procedures. Her mother claimed that Gypsy had leukemia as a young child, and the young woman’s head remained shaved to convey an image of illness.

There was no trace of the girl’s early medical records, which the Blanchardes said were destroyed during Hurricane Katrina. The mother and daughter had received a philanthropic bounty over the years, including the Habitat for Humanity house where they lived at the time, all due to Gypsy Rose’s supposed health issues and disabilities.

What could possibly drive a daughter — especially one who appeared to have multiple disabilities and health issues — to murder her mother? As the investigation unfolded, the Blancharde’s story was far more insidious than anyone could have guessed: a complex web of mental illness, feigned sickness, abuse, a grisly murder, and ultimately guilty verdicts for Gypsy and her long-distance boyfriend, who traveled to Missouri to help her commit the crime.

Gypsy Rose Blancharde, daughter of Dee Dee. (Case/Wikimedia Commons)

The case quickly attracted national attention in a variety of feature stories as investigators encountered a series of unexpected and increasingly bizarre twists. Had Dee Dee really forced Gypsy to feign disabilities and illnesses for her entire life, right up until the murder?

As an anthropologist specializing in disability, who also happened to grow up in the Blanchardes’ adopted city of Springfield, I was pulled into the story immediately. It was weird and horrific, to be sure, but there was more to it. Motherhood, disability, and care are far more complicated than they appear on the surface, a simple fact that emerged in high relief throughout this case. For the Blanchardes, almost nothing was as it seemed. This was evident the moment Gypsy Rose entered her first court hearing following her arrest for the murder. To everyone’s surprise, she walked into the courtroom unassisted, no wheelchair in sight. Things grew even stranger from that point forward.

Dee Dee was a classic case of Munchausen by Proxy Syndrome (MBP), renamed in the DSM-V as factitious disorder imposed on another. The term refers to the mental illness found in caregivers who lie about, produce, or exaggerate symptoms of illness or disability in another person. While extremely rare, it most often happens between a mother and her child.

Factitious disorder sounds like the stuff of urban legends, yet rumors of it come up repeatedly in my disability research. I first heard of Munchausen by Proxy, the outdated but still widely used term for the condition, while conducting a study on rare and undiagnosed disorders. I was told that parents of children with especially complex health needs plus disabilities were often cautious when speaking with doctors. They carefully toed the line between demonstrating their general understanding of key concepts without betraying that they knew too much, which could raise red flags. This had never occurred to me, yet it made perfect sense. But why?

I had vague memories of these monster mothers from news stories as a child, such as the high-profile case of Kathy Bush in the 1990s. Bush’s daughter, Jennifer, became a national poster child for health reform, attracting attention from everyone from professional athletes to the Clinton White House. By the age of eight, Jennifer had spent over 600 days in hospitals and undergone more than 40 medical procedures; her gall bladder, appendix, and a portion of her intestine had all been removed, but the overall reasons were unclear.

Tulane Medical Center, where Dee Dee frequently took Gypsy when they lived near New Orleans. (Gonk/Wikimedia Commons)

Medical providers and child welfare investigators had been suspicious for years, and Kathy was eventually found guilty of aggravated child abuse in a widely publicized trial in 1996. She served three years in a state prison and Jennifer was put in custody of the state of Florida. Years later, the family made headlines again when Jennifer defended her mother, saying she had never been abused.

Was Gypsy Rose ever sick versus healthy? Was there any truth to the narrative? Munchausen by Proxy is both fraught and fascinating. It blurs the lines between normal and pathological bodies, the truly aberrant or ill, versus the imagined. Munchausen calls into question the notion that kin relations are inherently good, that the family is a space of safety, that caregiving helps, and that medicine does good, not harm. This dismantling of binaries is most salient in the figure of the mother, the typical perpetrator in these cases.

How does society make sense of mothers who create illness and disability in their children to gain attention? Anthropologist Nancy Scheper-Hughes published her classic ethnography, Death Without Weeping, over two decades ago and it still unsettles undergraduates in lecture halls across the country each semester. Scheper-Hughes offers an unflinching study of a group in mothers in northern Brazil who were, she argues, allowing their children to die as a locally understood practice.

Based on fieldwork in the 1980s and building on her experience in the region as a Peace Corps volunteer in the 1960s, she asks two key questions. First, why were local babies dying in such large numbers? Second, why didn’t their mothers mourn?

According to Scheper-Hughes, these mothers practiced selective neglect by denying adequate nourishment and care to children whom they believed did not want to live. Per her analysis, local beliefs held that some infants and toddlers lacked a desire to live, so the mothers did not give them adequate food, liquids, or available rehydration solutions. The children looked sick — indeed, they were — but this was due to their mothers’ everyday actions within a broader social and economic context of scarcity and need. The results were fatal. Much like Gypsy Rose and Dee Dee, Death Without Weeping upends everything we hold true about maternal love and care, opening a space to ask what it means when those assumed maternal truths — natural or otherwise — crumble.

Book jacket for Nancy Cheper-Hughes's book Death without Weeping
Death Without Weeping: The Violence of Everyday Brazil by Nancy Scheper-Hughes

What if we consider Scheper-Hughes’ arguments in the context of a current public debate on the role of care versus harm: the anti-vaccine movement? A recent Washington Post piece argued simply — and convincingly — that affluent anti-vax parents engage in child neglect. They are putting their children in harm’s way, despite the fact that it is well-documented that these same parents pride themselves on doing their research and formulating clear (albeit scientifically disproven) understandings of why vaccines are to be avoided, postponed, or minimized. The form of care itself is causing the harm, potential or actual.

Indeed, one of the most baffling aspects of the anti-vaccine community for researchers is the steadfast commitment to the belief that vaccine refusal is a form of care, not harm, despite all scientific evidence to the contrary.

In today’s age of scientific parenting, books and websites offer new and ever-changing guidelines for how to maximize our children’s potential while hopefully minimizing our own potentially detrimental shortcomings. In turn, a parent’s ability to harm is taken almost as a given — without appropriate interventions, that is. These simultaneously intimate and performative sides of parenthood are perhaps particularly anxiety-inducing in our digital age.

I see this clearly among my peers, whose conversations are punctuated by fears of BPAs in plastic toys or strategies for encouraging STEM skills and musical prowess in even the youngest children. Picky eating is now increasingly pathologized, no longer a laughing matter, but rather a topic for potential therapy. This belief that American children are at a disadvantage due to their alleged pickiness vis-à-vis their international peers has given way to a new public fascination with children’s dining habits in other cultural contexts, particularly France.

Toddler holding a yellow plastic camera.
Kid holding a plastic toy. (Navy Blue Stripes/Flickr)

This pressure to perform care through informal research, purchase power, and therapeutic technologies permeates daily life, merging the trends in digital information curation with the more subtle displays of inconspicuous consumption that increasingly organize our social worlds.

Mothers today are acutely anxious about practices, diagnoses, care, and treatments gone awry. Take this season’s trend of fidget spinners, which provoked concerns about addictive behaviors and were soon banned by schools. Billed as a helpful concentration device for people with a variety of diagnoses, including ADHD and autism spectrum disorders, they were soon written off as distracting for other consumers. What started out helpful turned to harm.

Consider, too, the spike in recent years of occupational therapy among elementary school students. Can this be explained largely in terms of rising neurodevelopmental disability diagnoses or might it also connect to the increasingly academic and competitive approach to teaching young children? What does it mean, from an ethical and cultural perspective, when therapies become the first line of defense, particularly in a time when both misdiagnosis and pharmaceutical treatments are so common in children and teens? What does it mean to perform care in this way? And how might these increasingly medicalized approaches to previously routine aspects of childhood and caregiving slip into more insidious cases? Here, in each example we see clearly a broader public anxiety attached to disability and illness.

Cases like Dee Dee Blancharde’s are shocking, to be sure, but only because we recognize and fear the stories. We can love, but not too hard. A warm hug can also smother. Munchausen rests in the blurry spaces where care and harm collide. It reminds us of the slipperiness of care, complicating convenient binaries like good/bad, healthy/ill, or typical/disabled. The Blancharde case goes farther, however. It brings us into the heart of the country, to a sleepy city surrounded by small towns, churches, liquor stores, but also a growing site of opioid addiction, rising poverty rates, and dropping life expectancy. It rests at the edge of a disability belt, an area with markedly higher rates of people receiving federal disability services.

The case dabbles in a new normal of increasing precarity, a recurring theme in the daily news and national debates. It forces us to ask how the cherished science of medicine can go so wrong. It places a spotlight on the mother figure as committing the ultimate evil. And, at the end of the day, it reminds us of the underlying pathos of caring too hard, too violently. But it is not as foreign as we might wish to believe. And, like any scary story, that is the most terrifying part.