Frozen with fear and confusion, I had no idea what to do. My ability to cope hampered by youthful inexperience, I stood silently rooted to the strip mall’s parking lot pavement. My mind was racing, searching for an answer. The police officers had just treated my little sister and me with kindness and compassion, their smiles easily disarming me; then, as if flipping a switch when they turned to speak with my mother, the mood palpably shifted. At first, she tried to reason with them. Smiling her beautiful smile, she tried to explain why it made perfect sense to have walked several miles across town, hand in hand with her two small children in the dark of night, no real destination in mind. The police weren’t buying it. Unbeknownst to me, they had been tipped off by my father. He had called them, understandably worried when we were gone again, without a trace. But I felt blindsided. I was just out shopping with my mother. She didn’t drive, so it wasn’t odd to me that we had walked. It had grown late, the sun setting, but I was safe. I was with my mom. We weren’t doing anything wrong. So why were the police stopping us?
The discussion became heated: her voice incredulous at their inability to understand her reasoning, their voices threatening to put a sudden halt to our outing. I hated seeing them upset her. I felt instantly protective of my mother, but the feelings remained stuck in my throat, afraid to take on the authorities. Eventually, things turned physical and my brain flew into panic mode, a feeling that would later settle in my chest, becoming an uncomfortable yet familiar companion. They forced my mother into the back of a squad car and led us to the back of another. I don’t remember if I cried. I couldn’t speak. Forcibly separated from the person around whom my world revolved; in an instant, she was gone. Without notice. I had no choice. No chance to prepare. No control. I wasn’t sure if I would ever see her again.
It would take decades before I recognized the trauma caused by repeatedly being separated from my mom due to hospitalizations, institutionalizations, etc. With the world surrounding me narrowly defining trauma as things like natural disasters or war, it’s a wonder I ever arrived there at all. As an adult searching to make meaning out of my experiences, I find the theme of “Invisibility” rises to the top, time and again.
Society ignores my existence by perpetuating the myth that people with mental health labels don’t have kids, when statistics show that the majority do. This becomes the slippery slope into “people with mental health labels shouldn’t have kids,” when of course many people with these labels are great parents. Even if my existence is acknowledged, I’m told “It didn’t happen to you” (only to my mom) or that, as an adult, “You should be over it by now,” as if childhood trauma is magically erased at 18. I’ve even had people question whether my experiences of separation from my mother were traumatic… as if anyone else could ever make that determination! Birthdays, holidays, Mother’s Day… all the annual celebrations were continuous reminders that she was missing from my life.
In my mid-30’s, I landed at NAMI, labeled an “adult child” family member. While I did meet a few compassionate people locally, I found little real understanding of my experiences from a group comprised largely of parents. These parents often expressed horror at the mere thought of their “sick” child ever becoming a parent. Some fellow daughters and sons of parents with mental health labels were shamefully asked to “never speak about that topic ever again,” hushing our collective voice and sending a clear message: don’t talk about it! NAMI’s focus on illness and disease meant that we were genetically “doomed” to our parents’ fate of hospitalizations and forced drugging. Hope for recovery was overshadowed by the message of lifelong, chronic illness. Offering no alternative lens with which to view distress, NAMI left many of us hopeless, waiting to become “ill” and afraid to have children. As an extension of these fears, many of us unconsciously delayed or decided not to get married, found mates who already had children, or were afraid to have more than one child, fearing it would result in postpartum issues of the worst sort.
I feel most comfortable, by far, aligning with other people who have experienced system trauma. But I am far too often relegated to playing the role of “family member” as much of my mental distress occurred outside of the traditional mental health system. This categorizing not only completely dismisses my own experiences with trauma, but also goes against current efforts to knock down those walls of “otherness” that separate “us” from “them.” Advocacy movements have largely left parental/family rights behind, leaving deep wounds painfully buried. Many daughters and sons working in the mental health field choose not to disclose their experiences, fearing that discrimination by genetic association would be the death of their careers. The medical model only widens the divide. Viewing human distress through a shared social/trauma lens may be the best chance for families to heal, yet these experiences remain unrecognized by some of the very people with the power to shed light on them.
Mental health systems quite loudly continue to marginalize experiences like mine, first by neglecting to ask adults with mental health labels if they even have children, and second by responding with disproportionate child welfare involvement and removal via “predictive neglect” if they do. This further traumatizes families based solely on a parent’s mental health label (research indicates alarming 60-80% custody loss rates!).
Technical assistance issued jointly by the U.S. Departments of HHS and the DOJ (August 2015), as well as a report about ensuring rights to parents with disabilities and their children by the National Council on Disability, already exist. Backed by Title II and Title III of the A.D.A., as well as Article 12 of the U.N.’s Convention on the Rights of the Child (1990) and Article 23 of the U.N.’s Convention on the Rights of Persons with Disabilities, the foundation for change is there, but systems have not embraced it. Stopping short at the intersection of collaboration are the silos of Child Welfare, Adult Mental Health Care, Disability Rights & Family Law. Even the World Health Organization has a quality of life survey commonly used by mental health organizations that asks people if they have a satisfying sex life but fails to ask people about the socially valued role of being a parent!
In my personal experience, mental health systems further isolated me from my mother during hospitalizations and institutionalizations, failing to provide family-friendly visiting spaces and family communication options. The mental health system failed to recognize our firmly established, positive mother-child bonds, let alone help maintain them. They even erased us from the records, with my mom recorded as having two daughters upon her initial admittance to Norwich Hospital, and only one daughter upon discharge.
History has quite literally erased millions of daughters and sons from existence through the abominable practices of eugenics and forced sterilization. Perhaps “predictive neglect,” today’s so-called “legal justification” for removing infants from psychiatrically labeled parents in hospitals, came from these practices — a sort of “predictive defect,” predicting that a person labeled as “mentally ill” would certainly have defective children. Many mental health professionals carry on the negative spirit of that work today by automatically assuming negative outcomes. The lack of value assigned to parenting is reflected by a nearly total absence of positive parenting/family supports available. Personally, I found that parenting, while certainly very challenging and stressful, also gave me purpose. For me, being permanently separated from my son would have been mentally devastating. As a society we can sympathize when parents lose a child to death, but we don’t give a second thought to the trauma caused when positive bonds are broken by systems.
But perhaps this is beginning to change. As I write this, the news about immigrant children, traumatized by being separated from their parents at the Mexican border, grabs our attention and wrenches our hearts. While I have no idea if these children suffered trauma at home, nor on the journey to the U.S. border, I know they likely suffered trauma upon separation from their parent(s) as they ask the same questions I did: Where am I? Am I safe? Where are my parents? Are they okay? Will I ever see them again?
I am reminded that this is not the first time that our country has sanctioned separating families. American Indian/Alaskan Natives have a tragic history of government-sponsored removal of their children so severe that it prompted the creation of the Indian Child Welfare Act (ICWA) in 1978. Along with African Americans, both groups are disproportionately labeled with disabilities and disproportionately affected by child welfare involvement and removal. Our society condones separation of children from families through child welfare and court systems every day. Often these are lifelong sentences of separation; parents are almost never re-evaluated, even when a parent feels well or proves capable of caregiving again. Even when separation is necessary, trauma to children and parents is still likely. We need to stop separating children from their families based solely upon how “worthy of compassion” we judge parents and families to be and start supporting them, regardless of their current health and geography. Supporting parents and families through periods of mental distress instead of separating them forever, whenever possible, could avoid a lot of needless family trauma.
Ironically, my own mother also “erased me from existence” by forming the idea that my entire family died in a car accident when I was eleven. I don’t blame her — I believe she did what she needed to do to protect herself from the needless, continual “loss” of her children and family on top of being subjected to the torture of institutionalization. That does not mean that it didn’t affect me. To the contrary, it has affected my entire life. I wept when she first told us we were “spirits” and later in life I patiently endured countless hours of explanations of why I couldn’t be her daughter. Though I took heart when she called me “the best advocate and conservator in the world,” I would have gladly traded the title in for “daughter.” Yet, challenging times like these pale in comparison to the trauma of being separated from her. I could have understood human distress had it been explained to me. I don’t think anything could ever make me understand why the system thought I would be permanently “better off” without her. My mother was robbed from me, a “parental abduction.” I remember discovering that I grieved almost exactly the way children did who had lost a parent to death. Yet it was grief without closure because my mom was not dead, just… gone.
I took my cue from all these messages of invisibility surrounding me and shrunk to fit expectations. If you can’t be seen, you can’t be valued. Fulfilling careers, personal health, loving relationships, a good life… all out of your reach if you’re invisible. Even when I began telling my story, it often evolved into a story about the hardships my mother endured rather than focusing on how I was affected. Though our stories are inextricably intertwined, I sensed or perhaps put out the message myself that people would rather hear about my mother’s brave fight to keep the system at bay rather than the story of a heartbroken girl. Even the scanty amount of research available focuses on expectations of negative outcomes rather than the hope of positive healing solutions. With few exceptions, experiences like mine clearly have not been seen, let alone valued.
Though I grieve for that little girl within, I’ve also come to embrace the gifts that come with having survived trauma and humbly recognize the privileges I had that helped me through the darkest hours when so many of us did not survive. I know there are millions of other daughters and sons, young and old, in the U.S. alone, many of whom still struggle. The A.C.E. study acknowledges the experience of growing up with labeled parents but falls short by assuming only negative outcomes. Daughters and sons are as unique as any group of people, but there are some common needs. Systems need to identify their potential role in traumatizing or re-traumatizing children and families, and make changes based on valuable input from families. Systems need to think creatively about how to preserve positive parent-child bonds when families are separated, whether by hospitalization, jail, courts, etc. Family relationships are complex — why wouldn’t the solutions be just as diverse?
Systems need to stop judging parental competency from a snapshot of the parent’s most difficult hour and recognize the fluidity of mental distress and the potential for positive change. Systems need to use parenting assessments that fairly measure a parent’s functional capabilities and ability to parent with needed supports and services vs. judging solely on a label or negative predictions without proof. We need to recognize our potential joint power to support one another through a social lens of viewing human distress and hope for healing. Children need to be offered opportunities to express themselves through empowerment and artistic expression and learn how to care for themselves in stressful times through meditation, breathing exercises, self-love, exercise… whatever works. We need to learn how to laugh at ourselves and not take ourselves so seriously when we make mistakes. We need to learn to take care of ourselves as well as we take care of others. We need to learn to trust ourselves and realize that it is impossible to please everyone.
Like all children, children of parents with mental health labels need to be seen, heard and valued. We need to change the false narrative of genetic destiny and invisibility to one of hope and continued healing. We need access to information about human distress and healing from trauma. We need to learn how to love ourselves, as we are. We need to know that no matter what challenges the world brings, we possess the resources to weather those storms and rise again.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.