THE DINNER WITH CAROLINE seemed to jump-start a surreally good streak for my shout-it-from-the-rooftops campaign regarding ACE impacts and treatments. The American Academy of Pediatrics invited me to keynote their first-ever national conference on toxic stress, and I was even invited to the White House to give a briefing for leaders of eight White House agencies. It was a serious pinch-me-I-can’t-believe-this-is-happening moment.
And I wasn’t the only one talking about ACEs. More and more I was hearing leading voices calling out the need to identify and address the impacts of toxic stress. When I had the opportunity to visit the National Institutes of Health, Dr. Alan Guttmacher, head of the National Institute of Child Health and Human Development, mentioned that he had actually seen my TED Talk and shared with me his belief that “the developmental origins of disease are the future of medicine.” This resulted in the rarest of responses from me—utter speechlessness. How ACEs affect biology was suddenly a topic for discussion, even in circles where those conversations hadn’t previously been happening.
So when I began my talk on the need for ACE screening at a New York City conference in the summer of 2016, I was certain the cross-sector group of scientists, activists, educators, and policy wonks would be the perfect partners for thought-storming ways to make universal ACE screening a reality for all children. The one difficulty was that since I’d recently given birth to my youngest son, my body had become the milky equivalent of Old Faithful. There had been a whole day’s worth of talks after mine that I couldn’t tear myself away from, so by the time the moderator kicked off the closing discussions, I was a hurting mama. I had to sprint to the lactation room to pump.
Nearly an hour passed before I finally returned with seven ounces of liquid gold for baby Gray (or Grayboo, as I had taken to calling him as soon as we met). I’d been hoping to catch at least some of the wrap-up Q&A, but the woman before me in the lactation room had taken her sweet time. As I scooted into the back of the conference room, squeezing between chairs and whispering excuse mes, I picked up on a weird vibe. The air was thick with the feeling you get when something has gone sideways—and I had a sinking feeling it might have something to do with me. I’d come in at the tail end of someone’s comment and registered only the tone, which was decidedly tense. After that, the conference organizer got up, thanked everyone, and closed out the day.
What the heck did I miss?
I packed up my things and was making my way to the wine-and-cheese portion of the agenda when I was stopped by Jeannette Pai-Espinosa. Though petite in stature, Jeannette has a big presence. Growing up in Kansas City as the daughter of South Korean immigrants, she has the confidence of someone who has survived her fair share of storms and as a result knows how to navigate the world better than most. She had walked up to me with an expression on her face that said, Don’t worry, girlfriend, I’ve got your back. Although we had never met, I knew Jeannette by reputation. She was the president of the National Crittenton Foundation, an organization that works in thirty-one states and the District of Columbia to support the self-empowerment of young women and girls. The National Crittenton Foundation had landed on my radar because they had adopted a mandate to address root causes of poor outcomes for girls, and in doing so, put ACEs at the core of their work. I had heard that the foundation’s ACE-informed approach to breaking intergenerational cycles of poverty, poor outcomes, and violence was yielding powerful results. Jeannette was a fellow foot soldier who witnessed, day in and day out, the true impact of childhood adversity.
Jeannette skipped the handshake and wrapped me in a hug.
“Well, that was interesting!” she said as she stepped back.
“I just got back from pumping—what the heck happened?” I asked.
“People are upset! There was a big conversation about why it’s dangerous to screen for ACEs because it’ll be used to label low-income children of color as ‘brain-damaged,’” Jeannette replied, shaking her head. “Which is nuts, because none of the folks who were raising these concerns are actually screening for ACEs.”
“What the heck?” I was crestfallen. “Did they not hear me say that this happens in every community? This is about basic biology.”
“There’s a lot of misunderstanding” came a voice behind us. I turned around and recognized Nancy Mannix, the chair of a foundation taking on ACEs in Alberta, Canada. Nancy had every bit the look of a foundation patron, wearing a gorgeously tailored cream-colored suit and rocking a dark brown bob that reminded me of Jackie O. Earlier in the day I had heard Nancy stand up and share her experience with bringing the brain science and ACE screening to decision-makers and practitioners across the province. Listening to Nancy, I had been seriously impressed by her insights on the ground game. It was clear that she wasn’t afraid to roll up her sleeves and get her hands dirty. I had made a mental note to connect with her, so I was thrilled when she approached Jeannette and me. “We saw the same thing when we were bringing ACE screening to Alberta. The greatest pushback comes from the folks who don’t know the science and aren’t doing it. I’ve never heard someone say, ‘I tried screening, but it didn’t work’ or ‘We had to stop.’”
It took only a few minutes for Nancy and Jeannette to fill me in. It turns out that as part of the summary of the day’s talks, my call for universal ACE screening came up and was met with some pretty fierce criticism once the floor was opened up for comment. The most passionate resistance came from a few people who felt I was “medicalizing” adversity when they, as community activists, had spent a long time trying to solve the inequities giving rise to it. The loaded term biological determinism was even thrown out there.
These criticisms stung for a couple of reasons but primarily due to the fact that I had spent my entire career working shoulder to shoulder with community partners to improve the health of vulnerable children. That’s what had driven me to understand ACEs and toxic stress in the first place. Somehow, all of that was missed and I was being painted as “that doctor from San Francisco telling us that our kids are brain-damaged.” I felt as confused and disoriented as I had when I first heard Sister J warn about the “toxic dust” at our site.
“I get the concern about labeling, trust me, but it’s just not the reality,” Jeannette said.
She had firsthand experience of what could happen when ACE screening was deployed on a large scale. Across the diverse agencies supported by Crittenton, whether it was a child welfare agency or a juvenile justice organization or a group serving young moms or sex-trafficking survivors, Jeannette had seen that the information about ACEs empowered and truly transformed young women; it didn’t label them.
She told us a story of a recent trip when she was accompanying eighteen women and girls from various Crittenton programs located in eighteen different states to Washington, DC, to educate policymakers about ACE screening. As she was presenting the data, Jeannette said, there was a woman sitting right in front of her who lowered her head and began sobbing. Jeannette remembered thinking to herself, This is the one time someone is actually being triggered by this. She had never, ever seen that. She stopped the meeting, told everybody to take a break, walked over to the young woman, and sat down with her.
“Are you okay?” she asked gently.
The woman shook her head. “Oh, no. These are not . . . I’m not upset. You didn’t upset me.”
Jeannette leaned in, confused.
The young woman continued, “These are tears of pure, unadulterated joy.”
“Why joy?” Jeannette asked.
“Because I understand now why I am this way. I understand why my siblings are this way. I understand why my mother raised us the way she did. I understand that I can break this cycle for my children and I understand that I’m not a victim, I’m a survivor.”
Since that day, Jeannette told us, this young woman had begun reading everything she could on ACEs and toxic stress. And though she knew it would be a long struggle, she said, “I understand that I got here, that my family got here, over generations. And it will take me a while to fully process all that. But I know that I can make better choices. And not just for me. I can stop my children from having a score of eight, nine, or ten.” The young woman had scored a ten out of ten on the ACE screen.
Over the years, the National Crittenton Foundation has found the ACE scores to be one of their biggest tools for self-empowerment and advocacy. Once the women they support have the information, they are able to look at the context of their lives differently. Then they no longer feel they are to blame or that they’re stupid or that there’s something wrong with them. Once they understand how what happened in the past can affect how they feel in the present, how they see themselves and their healing process changes. They understand that their bodies have experienced a normal reaction to abnormal circumstances across the span of their lives. Many times, they’ll call their siblings and say, “This is it, this is what’s been going on with us!” The older girls in the Crittenton programs began talking to the younger girls about ACEs and how they were affected simply because they wished someone had told them.
As we got deeper into our conversation, Nancy Mannix shared more about her experience in Canada. She had spoken to the criticism concerning overmedicalization. A few people were resistant to the idea that toxic stress was a physiological problem in the first place, suggesting that ACEs and their impacts were simply normal human or cultural problems that had no business being met with a medical diagnosis, so why not leave the learning problems to the teachers and the behavior problems to the therapists? The expressed concern was “overreliance on neuroscience.”
Nancy’s experience in Alberta made her an ardent believer in the science of toxic stress and in routine ACE screening as a critical part of regular medical care. In 2005, she had stumbled on Felitti and Anda’s research while trying to understand the role of childhood trauma in addiction treatment. Around the same time, Nancy also discovered the work of the Harvard Center on the Developing Child, which clarified for her the scientific basis for using ACEs to assess for toxic stress. At the time, her job was to identify individuals and organizations doing important work in the fields of child development, mental health, and addiction. When she first read the ACE Study, she experienced a jolt of understanding of the deep connections between each of the fields she was passionate about.
At the time, Mannix and her team observed that most addiction treatment was grounded in the belief that clinical work should focus on the patient’s future, which meant clinicians didn’t want to spend too much time on their patients’ past. Interventions were disparate and based on individual diagnoses. The systems that were supposed to help patients heal were fragmented. Mannix recalled the case of a seventeen-year-old girl with an eating disorder and a cocaine addiction who was sexually acting out. The fact that these behaviors might all be the symptoms of a single underlying root cause wasn’t on anyone’s radar screen. So she was sent to rehab for the drug problem, sent to a separate clinic for the eating disorder, and “counseled” about the dangers of risky sex. No one realized that the severe adversity the young woman had experienced as a child might be driving her symptoms, and none of the interventions were particularly effective. Mannix and her team set out to change all that.
They began by bringing a group of addiction-treatment providers together with patients to talk about how the system could better serve clients. Some providers were receptive, but others pushed back defensively, insisting they were the experts and that they provided excellent care—these patients were simply failing treatment.
So, Mannix made it her mission to bring the science of ACEs to Alberta. She held what she called an initial “catalytic convening” in the town of Red Deer, inviting clinicians, academics, policymakers, and education experts. She recruited the leading experts in the field of toxic stress to lay out the latest science and create a straightforward and understandable story to explain the impact of early adversity on brain development. This convening launched a multiyear strategy to bring decision-makers and practitioners together with scientists to understand ACEs and the emerging science.
As part of this process, researchers at the University of Calgary launched a study, recruiting over four thousand patients from primary-care clinics and asking about ACEs as well as health status and mental-health measures. Much like the original ACE Study, the population was 83 percent Caucasian and 82 percent college-educated. What the researchers found was that the numbers fell within a few percentage points of Felitti and Anda’s results—demonstrating that Alberta was as affected by ACEs as anywhere else. People with high ACEs were (again) shown to be at much higher risk for depression and anxiety and also to have a greater risk of asthma, autoimmune disease, food allergies, cardiac disease, chronic obstructive pulmonary disease (COPD), migraines, fibromyalgia, reflux disease, chronic bronchitis, stomach ulcers—and the list goes on.
People were astounded to see the profound effects of ACEs that had previously been unrecognized in their communities. After they got over their shock, they came together to find solutions. Doctors and health programs began regularly screening for ACEs in both outpatient clinics and inpatients, and policymakers put forth contract requirements with agencies receiving government funding to be competent in the brain science. The Alberta Family Wellness Initiative, as it would come to be called, made its mark in Canada by turning “what we know” about early adversity and health into “what we do” in practice and service delivery. So on this day, Nancy Mannix was eager to rebut the “overreliance-on-neuroscience” bias, eager to proselytize for competency in the science and routine ACE screening, and eager to insist on mobilizing the powers that be in support of better systems to create better care.
Jeannette and Nancy and I had all come via different paths, but we had arrived in the same place and were focusing on the same source of the problem. Standing with them, I could feel the beginnings of a true public-health response coming together.
But the day’s contentious conversation had illuminated yet another point of resistance. While I had expressed my opinion that primary-care clinics were the ideal place for ACE screening, I had also said that enough kids had been sent to my clinic by teachers requesting a diagnosis of ADHD and medications that I knew that the doctor’s office wasn’t the only place that needed fundamental understanding of toxic stress. This statement opened a hornet’s nest: one woman in particular wondered, as I heard later, whether ACE screening in schools could be used to label low-income kids and stigmatize them even further.
Whenever I had a question concerning ACEs and education, I knew whom to turn to—fellow physician and ACE trailblazer Dr. Pamela Cantor. Her organization Turnaround for Children was leading the charge to bring the science of ACEs and toxic stress into schools.
Turnaround has been at it for over a decade, but Dr. Cantor herself has been working with kids affected by ACEs for a lot longer than that. A psychiatrist by training, she specialized in child mental health and gravitated toward treating kids exposed to trauma. She had developed what she called a Robin Hood practice—as a member of the faculty at Cornell Medical School, she practiced on the Upper East Side of Manhattan and in the South Bronx. Working at one clinic paid the bills so she could work at the other. Unsurprisingly (to me, anyway), the common thread she saw between her work in both communities was exposure to ACEs. Over the years she became more and more involved in research and advocacy that focused on the developmental disruptions caused by trauma. Which is why on September 11, 2001, when the most acute trauma the United States had experienced since Pearl Harbor hit, New York City came calling.
Dr. Cantor was asked to co-chair a partnership commissioned by the city’s department of education and help launch a study to investigate the traumatic effects of 9/11 on New York City’s public-school children. The partnership worked with researchers from the Columbia University Mailman School of Public Health, and together they undertook what was at the time the largest epidemiological study of an urban public-education system from a mental-health perspective. The commonsense hypothesis going into the study was that the kids in schools closest to Ground Zero would be the most affected and would naturally need the most help.
The data came in the form of maps on huge sheets of tracing paper that the research team could overlay to see the alignment between trauma symptoms and the various neighborhoods relative to Ground Zero. As they lay sheet after sheet over each other, the team found that the data showed a totally different picture than any of them had expected. The distribution of trauma symptoms was not clustered around Ground Zero, which were largely middle-class neighborhoods. Instead, the greatest groupings of trauma symptoms corresponded strikingly with the communities of deepest poverty. The next page of the map revealed that the areas that were most affected were also the communities that had the fewest resources.
Dr. Cantor’s response to the data was to get out into the schools and meet the actual children represented by these dots on a map. The first place she visited was an elementary school in Washington Heights, a neighborhood on the border of Harlem.
As she entered the school, Dr. Cantor noted that the hallway to the huge, looming building was dark. Standing there was a mother, clutching the hand of her little girl. There were no signs of childlike industry, no drawings of families or smiling macaroni faces glued onto paper plates. Instead, there was a feeling of fear and chaos. It was as if no one was in charge. The halls were filled with kids running and yelling. There was a group of kids fighting in the hallway—big kids. It was a shock to Dr. Cantor the first time she saw it, but as she visited more and more schools, she learned that it was typical for schools like this to contain middle-school-age kids who had been held back. They were twelve, thirteen, and fourteen years old, big kids fighting in the hallways right next to kindergarten classrooms. She couldn’t help but imagine how the little kids must have felt navigating the hallways of that school every day.
When Dr. Cantor was finally escorted to a classroom, she observed kids making paper airplanes and fooling around, supervised by teachers who looked completely unable to manage their students or control what was going on around them. There seemed to be little or no learning going on.
What the study eventually concluded after many visits to schools across the city and hours of conversations was best illustrated by one of the youngest participants. A five-year-old boy from Harlem was asked to draw a picture of his feelings about 9/11. When he handed it to Dr. Cantor, she looked first for what she had come to expect: two iconic, smoking towers. They were there in the drawing, but only as two tiny structures in the distance. In the foreground, and much bigger, were two stick-figure children pointing guns at each other.
This picture demonstrated with heartbreaking clarity that to the kids showing the most signs of trauma, 9/11 was only a trigger—two curlicues of smoke on the horizon. The origin of their symptoms was not the acute trauma of 9/11: it was the clear and present danger of their everyday lives; the chronic stress of walking to school through a crime-ridden neighborhood in the morning and then feeling unsafe in school all day meant that the kids in the deepest poverty lived in a state of constant alert.
Dr. Cantor’s experience working with children on both sides of town cued her into a critical realization. The communities near Ground Zero were equipped with more resources, which meant adults were far more able to act as effective buffers, keeping the kids’ stress out of the toxic zone and into the realm of tolerable. Whether it was a teacher, a religious leader, a grandparent, or a coach, the children closer to Ground Zero had many more sources of buffering that could help stabilize them in moments of acute trauma, even if it was severe.
What Dr. Cantor saw through the research was that poverty itself reduces the resources available to even caring, dedicated parents to be effective buffers for their kids. Not only were children in poverty experiencing a greater incidence of trauma, they were more likely to develop toxic stress because their source of buffering was constrained by the daily existential stresses that families were under. That was what was affecting their ability to thrive and learn in school. And that was the insight that drove Dr. Cantor to leave her practice and dedicate herself to creating solutions that could help very vulnerable children.
When she first set foot in the elementary school in Washington Heights, Dr. Cantor’s immediate reaction was burning outrage. As a psychiatrist, she recognized the symptoms of trauma all around her. It wasn’t one or two kids, it was the entire school. When people hear the word trauma, they often think it represents a small percentage of children requiring services in a typical high-need school setting, somewhere around 10 to 15 percent of the kids. That was what Dr. Cantor once believed. What she came to learn after visiting many high-need schools was that while there might be a relatively small percentage of kids who needed individualized mental-health services, the students who required something beyond a traditional educational environment in order to be able to be ready and engaged in learning was much, much larger.
Turnaround for Children was founded after 9/11 with the recognition that while most schools inherently acknowledge the importance of mobilizing resources in response to acute traumas, they simply aren’t set up to address the insidious ways in which the day-to-day onslaught of chronic adversity undermines learning. First the organization had to educate people about the connection between adversity and academic performance. Despite all the research, Dr. Cantor and her team still found that this wasn’t always intuitive for many educators. Next, Turnaround had to figure out how to support schools in designing practices and interventions that worked for kids dealing with the impact of stress to improve their learning outcomes. No easy task.
As a physician, Dr. Cantor approached the problem via the neurobiology of adversity. In order to be able to pay attention and learn in school, a kid needed to engage his prefrontal cortex (the conductor), which meant the amygdala alarm had to be silent. Safety and stability would be key components to the solution. But how could Turnaround create safety and stability in the classroom when kids were bringing these stressful experiences from home and the community into the classroom with them, causing problems and challenges for teachers and fellow students? Dr. Cantor and her team knew that for many of the kids they were serving, the amygdala alarm was always on high alert, and the cortisol thermostat was overheating. They also knew that the natural antidote to toxic stress—having a well-regulated caregiver who could buffer the stress response—was often in very short supply.
Turnaround began by using the science to inform school practices and policies. They placed mental-health professionals and social workers in schools, building systems of support that families could easily plug into. Turnaround invested in training every adult in the school environment, from the leadership to the guidance staff to every single teacher—because they recognized that the traumatic effects of adversity crossed an entire school building. They observed that one child in a classroom with attentional and behavioral challenges will often disrupt a lesson, but thirty children with these kinds of struggles can trigger a tinderbox effect, shutting down learning for everyone.
One of the biggest challenges for many schools was discipline, how to balance the safety of the school community with the needs of each individual child. The traditional model of school discipline was reactive and punitive (you do X, the consequence is suspension or expulsion), and that meant that a lot of kids were losing valuable time in the classroom. Turnaround developed strategies aimed to work with a student’s biology instead of against it by first addressing the dysregulated stress response and then dealing with the issue at hand. This could be something as simple as offering a student a better choice for dealing with a stressful moment, such as retreating to a space reserved for quiet reflection or prompting a student with a silent signal to count to ten and breathe deeply.
Their approach had a profound impact on school culture. Across Turnaround partner schools from 2011 to 2014, suspensions were cut in half. Measurements of classroom climate, productivity, and engagement jumped by over 20 percent, and severe incidents declined by 42 percent. Dr. Cantor and her team expanded Turnaround to more cities, bringing their model from New York City to Washington, DC, and then to Newark.
Still, they found themselves struggling with one especially frustrating challenge. All of the science suggested that the positive outcomes they were seeing should pave the way for improved learning, but despite all the wins on school culture and climate, test scores remained surprisingly stubborn. They racked their brains for what they could be missing. They met with school leaders, looked at their data, and went to educational conferences to learn from others’ best practices.
The breakthrough from Dr. Cantor’s perspective ultimately came with a shift in how they looked at solutions. She saw that educators often lifted up one practice as the solution to the problem. After being in the education world fifteen years, Dr. Cantor had seen how accountability and measurement was now the thing, how expectation was the thing, how a great teacher in every classroom was the thing.
It hit her that in medicine, she hadn’t been trained to ask, What is the thing? Her training told her to ask herself: What explains the symptoms we’re seeing? And usually the answer was more complicated than just one thing. She realized that Turnaround had to apply interventions based on a comprehensive understanding of the problem. It was tremendously important for kids to go to a school where they felt physically and emotionally safe. Check. It was also really important for kids to develop their readiness for learning, because the exposure to adversity affected the skills that were involved in learning readiness. Check, we have to do that too.
Many school systems were profoundly influenced by the realization that when it comes to student success, teaching things like resilience and grit can be as important as teaching math and science. Dr. Cantor and her team went one step further. The developmental neuroscience suggested that before kids could learn grit and resilience, or math and science, for that matter, they needed a basic foundation in healthy attachment, stress management, and self-regulation. Healthy attachment is what Dr. Lieberman and Dr. Renschler worked so hard on with Charlene and Nia. When it goes right, healthy attachment begins at birth and forms the basis from which we all learn to trust and relate to one another. For many children, growing up in poverty, in families stressed by economic and other insecurities, healthy attachment and stable nurturing experiences were much more challenging. Whether it was chaos at home, violence in the community, the crushing weight of poverty, or the fog of drugs, alcohol, and mental illness, families often faced overwhelming challenges in providing safety and security for their children.
Dr. Cantor realized that they had created a model built on a foundation that many of their students never got, which was why their model was only partially effective. They figured out that when it came to educational success, the key was not just to provide the right ingredients; just like with Tyrone’s tadpoles, the timing, sequencing, and dosage of these ingredients was critical.
So, Turnaround came up with a framework it called Building Blocks for Learning that worked to develop in children the foundational skills of attachment, stress management, and self-regulation, and then layered the other skills for learning on top. By ensuring the development of these skills in an order that makes sense for learners’ biology, Turnaround was building on decades of neuroscience telling us that it’s not enough to “step on the gas” by providing enriched environments to support learning for children. You also have to release the “brake” (the inhibitory effect of the amygdala on cognitive function) by supporting attachment, stress management, and self-regulation. In doing so, Turnaround may finally be able to crack the notoriously difficult test-scores problem for kids living with adversity. Their partner schools in the Bronx are beginning to see net gains in scores in math and language arts that outpace the gains of other schools in the district.
Far from stigmatizing and singling out kids with ACEs, Turnaround embraces an approach that simply identifies where a student is on the developmental trajectory and uses the science of toxic stress to help get that child back on track. Knowing whether a kid’s development is stuck because of exposure to ACEs is fundamental to figuring out where to start in the classroom.
Dr. Cantor’s description of her schools was consistent with everything I knew about toxic stress. I thought about my kids in Bayview, the ones whose learning and behavior problems in their classes were so often severe. It hit me that ACEs weren’t just at the root of a public-health crisis in America, they were at the root of our public-education crisis as well.
It was clear that while ACEs might be a health crisis with a medical problem at its root, its effects ripple out far beyond our biology. Toxic stress affects how we learn, how we parent, how we react at home and at work, and what we create in our communities. It affects our children, our earning potential, and the very ideas we have about what we’re capable of. What starts out in the wiring of one brain cell to another ultimately affects all of the cells of our society, from our families to our schools to our workplaces to our jails.
Nancy Mannix, Jeannette Pai-Espinosa, and Pam Cantor were taking this new understanding and integrating it into their work in ways that were creating breakthroughs for the communities that they served. Despite the pushback and the naysaying, these women were on the vanguard of the movement, slowly but surely bringing ACE-informed approaches to scale.
I made a mental note to stay in touch with these women, to learn from their successes (and failures), and support and encourage them in any way that I could. I felt heartened to see the movement gaining traction beyond the field of pediatrics and branching out the beginnings of a true public-health movement. Still, I felt unsettled. It was unnerving how quickly the conversation at the conference had gone sideways. I knew that what I really needed to understand about that conference was Why the hateration?
A few weeks later, I found myself once again packing up my breast pump to attend yet another conference that I just couldn’t miss. This one, hosted by the White House and the Gates Foundation, was being held at the University of California, San Francisco, which meant that at least I didn’t have very far to travel. As I handed Grayboo to my husband with a kiss and then stepped out the door, I found myself looking forward to this conference more than I had for almost any other in recent memory. I wasn’t speaking, which felt a little bit like a luxury. I could just sit back and soak up all the exciting new research and delicious data.
The agenda of the Precision Public Health Summit was to bring everyone together to discuss how precision medicine could be used in the public-health arena to level the playing field in the critical first one thousand days of a child’s life. In other words, it was right up my alley. The discussion was wide-ranging, but a big theme throughout was the importance of partnerships between scientists and the communities they are trying to help. One of the speakers from the community partner side of things was Jenee Johnson, the director of the Black Infant Health Program (BIH) in San Francisco.
The organization’s mission is to improve maternal and infant health in African American communities, which meant our paths had naturally crossed. Even before the Bayview clinic opened, Jenee recruited me to lead a class on common health concerns for babies that BIH hosted at the Bayview YMCA. All these years later, I was happy to see BIH’s wonderful work represented at the summit.
But soon, as someone who is pretty conversant in the worlds of both science and community, I noticed a natural tension playing out in front of me. The researchers and statisticians who sat beside Jenee talked about biomarkers and data sets, about the difficulties of data collection and privacy. Jenee, however, spoke passionately about the moms and babies she worked with and the day-to-day reality of poverty and social adversity in the community. She talked about respect for black women, clapping her hands as she repeated “Respect, respect, respect,” emphasizing each syllable and raising her voice with each clap. To the research scientist, numbers are people. To a person who serves vulnerable families, numbers distract from real experience.
As she began to speak to the audience, the emotion in her voice made the room of over three hundred scientists feel very, very small. Jenee talked about a mother who showed up to a program one evening with all of her possessions in a suitcase and a baby on her hip because she had nowhere to spend the night. Her voice rose with pain and anger as she talked about how science was failing the people she worked with by not putting them at the center of the work.
“What’s the serum for helping a community to stay together and not be dismantled? I have families that now commute back to my program from Antioch—forty-five miles away. What’s the serum for that? Dr. Martin Luther King told us that it does not cost America anything to have me drink at the same water fountain as you. It does not cost America anything to have me sit at the front of the bus. But it is going to cost something to make sure that we have educational equality, equity in jobs, housing. So we are gathered here, and this is a beautiful gathering, but we are missing a whole other group of people. Because to manage stress, the stress that my clients come into the office with, I don’t have a serum, there’s no pill, there’s no research question to help me help them. We keep talking about stress, stress, stress, and let’s study, study, study, when the axiology of black people is relationship. We all know that. We need to bring them up on the agenda and bring other people into the space. Especially the people that this impacts. We’re at meeting number five hundred that I’ve been to, brother, and they are not here.”
The room remained silent for a moment, and in that small slice of time, a surge of conflicting emotions overcame me. I felt Jenee’s anger about the lack of diversity in the conversation and her heartbreak for the young mother who had nowhere to go. I agreed with much of what she had said, but her statement that the people affected by stress weren’t here was dead wrong. I knew that for a fact. For a split second, my husband’s face flashed in my mind. His expression was taut with alarm, his jaw clenched—he looked menacing in a way I’d never seen him before.
It was 2014, before Grayboo was born, and we were at Lake Tahoe in Nevada with the kids waiting for a table at a restaurant. I remember rounding the corner returning from the restroom and catching a glimpse of my husband. His appearance was alarming. I took in every detail of the scene as if it were playing out in slow motion. His body was tight as a drawn bow, full of potential energy that looked like it was about to become kinetic. His fists clenched and unclenched. I could see fat wormlike veins standing out on his forearms. His eyes, shifting back and forth, were trained on our three rowdy black boys playing in their usual oblivious manner on the bench in front of the restaurant. Kingston, only two years old at the time, was trying to push my twin stepsons, Petros and Paulos, both eleven, off the bench. He was laughing and shoving, and they were doing their best to goad him into showing his fiercest feats of strength. Then Arno’s eyes led me to look just past them, to two burly Caucasian men with shaved heads, steel-toe boots, and dark gray-blue tattoos snaking up their necks. The men were glowering at our sons. I recognized immediately that Arno was in full fight-or-flight mode, and for a second, I thought my own heart might stop.
Just then, the hostess called our name, giving us a good reason to get away from the two human bears in the forest. But the image of my husband in that moment, bare-knuckled and ready to brawl as he watched the men glaring at his kids, is burned in my mind for two reasons. One is that as the father of black children, Arno has an additional risk factor for stress. When you are black or brown and living in America, there are more threats and stressors inherent in your experience; in other words, you live in a part of the forest where there are a lot more bears. Race is never easy to talk about, but exposure is exposure is exposure—that was a big part of what Jenee had been saying, and she was right.
But the other reason I will never forget that moment in Tahoe is the thing I wished I could share with Jenee: While he does have black kids, my husband is white. In fact, my sweetheart, Whitey McWhiterson, the Mayor of Caucasia (as I affectionately call him), is both white and a successful CEO. He sits on the top of the socioeconomic food chain. If you were to look up the Man in the dictionary, you’d see a picture of my husband. My two stepsons are adopted; their complexion is darker than mine, while Kingston is a creamy caramel. Undoubtedly, the two men snarling at our kids had no idea that they were standing just a few feet from their father. But in that moment, Arno was just a dad whose kids were being threatened. What I saw was a profound example of the intersection of biology and society. The stress-response mechanism is hardwired into all of us. Threat equals reaction, and it doesn’t matter if the threat is in the form of a Confederate flag tattoo or a strapping grizzly; the same biological mechanism is triggered.
What I felt Jenee wasn’t seeing was that while my kids and hers might have stress-response-triggering experiences because of their race, poor white kids living in Appalachia also have triggering experiences. Think about it like this: We all live in a forest with different kinds of bears. There is a large group of bears that populate a part of the forest called Poverty, and if you live there, you’re going to see a whole lot of bears. There’s also a part of the forest called Race, where a different cluster of bears hang out. And there is another bear neighborhood called Violence. If you live near any of these bear dens, your stress-response system is going to be affected. But here’s the important part—it is affected in the same way no matter which bear you tango with. Unfortunately, a lot of people (like my patients) live in a place in the forest where the neighborhoods of Poverty, Race, and Violence overlap, and for them, it’s wall-to-wall-to-wall bears. But there are also a lot of bears that live in the neighborhoods of Parental Mental Illness and Divorce and Addiction, which is why I reacted so strongly to the last part of Jenee’s statement. Some of “the people that this impacts” were in the room.
That’s why we need to collect broad swaths of data, because public-health-scale solutions require us to identify and measure toxic stress in everyone, not just one group of people. We are not going to make a dent in this problem by creating solutions for just one community.
Suddenly, as I sat listening to Jenee, something in me shifted. It was as if someone had flipped a switch. This was it! This was precisely the root of so much of the emotional blockage around ACEs that I had encountered. It was why those folks in New York got so riled up so quickly about the thought of their kids being stigmatized by screening. And right now, the anxiety and pain was etched on Jenee’s face. What about us? she seemed to be saying. What does all this do for the pain and suffering in my community? That sentiment is both totally understandable (the pain and suffering of the African American community is one of our country’s deepest unhealed wounds) and exactly what will keep us running in place for years to come.
I stood up, trembling.
With the hush in the room, I didn’t need a microphone.
As I talked, I could hear my voice shaking. I may have been speaking to Jenee and the others in the room in that moment, but it felt more like I was screaming on the edge of a canyon, hoping the echo would carry for miles.
“I think that all of us are in this room because we are trying to come up with the solutions for the entire population. Some of it has to do with payment for mental-health services so that the parents of my patients who have mental-health disorders can get good enough care so that they can hold down a job so that they can keep their children in housing. I believe that when we make the connection between adversity and only the people who you are seeing and I am seeing every day, our stories are not enough. We need to connect our stories with the science and the data.”
My voice rose. I could hear my Ts becoming more crisp, my As opening, and my cans turning into cyans as the lilt of my childhood patois dialect undercut my attempt at composure. Tears welled up and spilled down my face.
“It’s not just dat it doesn’t cost Americah anyt’ing for us to drink at di same watah founten. We mus’ show dat it costs Americah bilyons of dollahs in cardiovasculah disease and cyan-sah and housing and educya-shon for us to drink at diff’rent watah fountens!” The room erupted in applause.
“We need to make dat argument! We mus’ hexplain to ev’ry person dat if dey are in Appalachia, if dey are living in Middle Americah, if dey are living in Kentucky and dey believe dat dey have it hard—we mus’ mek sure dat ev’ry single person knows dat dey cyan get strong solu-shons—for poor white folks and for de peer-ent who brought her child and her syuitcases to you—dat we are in a united struggle about de effects of adversity on de developing brains and bodies of children. And when we all get behind dat, den we will have solu-shons that will lif’ ev’rybody up!”
I sat down, trembling with emotion. When Dr. Clarke handed me Dr. Felitti’s paper almost ten years earlier, I had been able to pull the pieces together and recognize what was really going on with my patients. In that moment at UCSF, my heart still racing, I realized that I had just had a second (very public) epiphany. Why were people so resistant to the science of adversity and to giving a basic fact of our biology a name and a number? Because when you bring it down to the level of cells, the level of biological mechanisms, then it is about all of us. We are all equally susceptible and equally in need of help when adversity strikes. And that is what a lot of folks don’t want to hear. Some want to stand back and pretend that this is just a poor-person problem. Others take fierce ownership of the problem and say, “This is killing my community,” but what they also mean is It’s killing my people more than yours.
In rural white communities, the story is about loss of living-wage work and the fallout from rampant drug use. In immigrant communities, it is about discrimination and the fear of forever being separated from loved ones at a moment’s notice. In African American communities, it’s about the legacy of centuries of inhuman treatment that persist to this day—it’s about boys being at risk when they are playing on a bench or walking home from the store wearing a hoodie. In Native American communities, it is about the obliteration of land and culture and the legacy of dislocation. But everyone is really saying the same thing: I am suffering.
It is easy to get stuck on your own suffering because, naturally, it is what affects you most, but that’s exactly the mentality that is killing black people, white people, and all people. It perpetuates the problem by framing it in terms of us versus them. Either we get ahead or they get ahead. That leads quickly to a fight for resources that fragments efforts to solve the same damn problem.
What I was trying to communicate to Jenee and to everyone in the room was that this very human instinct toward tribalism was why we needed science. That was why we needed every researcher, data cruncher, and scientist in that room. Because the science shows us that it is not us against them. In fact, we all share a common enemy, and that common enemy is childhood adversity. The approach to treatment for the homeless child standing with her mom holding their bags at a Black Infant Health Program meeting is the same approach you use for the family in Pennsylvania where the dad hasn’t worked in five years because the plant closed down and for the little girl in rural China whose mother had to leave her to find work in Beijing and for the families in Montenegro and Serbia who lived through civil war . . . It’s the same fundamental approach to treatment for us all. If we begin to understand that, then maybe we will stop being so Balkanized in our response to the problem and be able to come up with solutions that work for everyone. Because, as my dad used to say in his Jamaican patois, “That rising tide, she lif’ up all di boats, mon.”