What I remember best about John F. Kennedy’s assassination is the looping image of the president’s little son, “John-John,” saluting. In 1963, I was eight, and we lived in South Bend, Indiana, where the winters were fierce and long. I was hunkered down in the basement, with the heat blasting and unending coverage of the memorial and the national tragedy on TV non-stop. That image of John-John must have replayed a million times – or maybe it is the distortion of my young memory and my profound identification with the grief-stricken child. I don’t remember much else about John Kennedy Junior through the rest of my life, but I never forgot when he was, I guess, three. What happened to him?

The Kennedys were iconized, as tragedy and martyrdom often are, and it was years before I knew some of the unsavory politics and aspects of JFK. I was surprised a few days ago when I heard a story memorializing his sister Rosemary Kennedy on the 18th anniversary of her death. I did not know there was a Kennedy sibling who had been lobotomized for being “slow.” It got me thinking about the neglect, even seeming annihilation, that often comes with political or other kinds of “greatness,” large and small.

Our dad was not a major celebrity or famous, but in his way as a religious and community leader, he was a figurehead or centerpiece of sorts. I remember when we were growing up, sometimes when we met someone new, someone he knew, or someone noteworthy perhaps, he would say, “Do they know who you are?” The emphasis on “are” meant, “Do they know you are my daughter? The cantor’s daughter?” Evidently, that was all that I was. There was no me.  

When our mom died, we each had a list of people to call and notify, and one of the people on my list was the teacher of Dad’s autobiography writing group. He had been in that group for perhaps five years, writing and sharing his memoir. Everyone loved him. Apparently, the group format was that participants would read aloud and comment on each other’s work, so they knew each other quite well after that long. When I identified myself to the teacher, she said, “Oh! I didn’t know he had a daughter.” Rather shocked, but not really, I said, “Yes. He has three.” As ever, my existence was an ongoing question. In this case, it was all three of us, I guess. 

I remember early on feeling I had to justify my existence somehow, earn my right to occupy a patch of ground to stand on, on this earth. Much of the time, I felt like a puff of smoke or shadow that was perhaps punctuation in his screenplay. Or a prop or extra in his movie. Perhaps that is why I excised the word “deserve” from my personal lexicon, and to this day, I bristle when I hear it. There really is no such thing in this world as “deserving,” or perhaps more accurately, getting what one “deserves” – so I believed.

In the mind of the neglected child, existence is a mystery, or it was to me. Worthiness, merit, privilege, specialness, responsibility, “luck,” – how do they all fit together? How is it determined who gets what? And why me? Or why not me? And what on earth to do about it? I remember early in my exploration and study of neglect, I could spot a child of neglect quickly by the signature shrug, deep as the ocean, of “I don’t know what to do!” Or, “There is nothing I can do!”

When I started therapy in 1978, long before many of my readers were born, our mom muttered bitterly, not quite under her breath, “…the ‘blame your mother’ generation!” I have no idea why I even told her. From then forward, my therapist ever retained her reign as “public enemy number one.” Blame is not my paradigm – that I want to underline – and my purpose is anything but that! Rather connecting perhaps counterintuitive dots, that might lead to better self-understanding is my wish. And admittedly, sharing insights that might be interesting to me.

Similarly, “Refrigerators, Helicopters and Tigers” (oh my!) may seem to evoke Dorothy exclaiming the perils of a terrifying world or a bad joke (what do the three have in common…) So, bear with me please as I seek to elucidate more less than obvious expressions of neglect. 

Again, the deepest and most injurious sequela of neglect is the rupture or failure of the primary, most important attachment(s,) most notably with the mother whose body houses the child at first, and ideally would continue as a home and source of comfort, regulation, and protection from the perils of that dangerous world.

Perhaps the most integral and the first vehicle of comfort and regulation is the “simple” experience of being seen. Gazing into the face of a present and loving (ideally calm and regulated) other is foundational. Brain development begins with the resonant dance of the gaze and evolves into being accurately heard and responded to. Not perfectly of course. It seems so simple, no? A no brainer in more ways than one. Sadly, it is so very often lacking. Missteps and mistakes, of course, are part of the deal, but with repair, we are actually better for them. Confidence or knowledge that repair is possible makes the inevitability of imperfection bearable and survivable. 

The most devastating impact of neglect is the deathlike loneliness of not feeling seen, but even worse, not being or feeling known. When I am known as me, as distinctly, uniquely ME, this means I exist. This feeling or sense that I exist may, with luck, evolve to a sense of self, and with even more luck, a sense of self-worth: I exist, and I matter. Without it, we may drift unmoored in a foreign world, wondering what is wrong.

It is hard to believe it has been a year since the horrifying Taliban takeover of Afghanistan. Admittedly, I was barely aware of the US’ 20-year “involvement” there until the messy and controversial evacuation. My limited knowledge of the place was only from the novels of Khaled Hosseini, some of which were so sad as to be almost unbearable to get through. I would ask myself: how did it happen that I was born here and those women were born there, and how do they endure such lives? 

With interest, I heard a young American war veteran talking about his experience in Afghanistan, which sounded much like how I remember young soldiers in my youth describing their experience of the Vietnam war. They had no idea what they were doing there or why. I was also surprised and gratified to hear the Public Radio commentator explaining the recently identified category of trauma referred to as “moral injury.” This is the trauma of being forced to witness or commit acts that painfully conflict with one’s own values, morals and beliefs. Often moral injury occurs in the line of duty: military, medical, where the survivor is faced with impossible choices or no choice at all. Of course, we know it also occurs plenty in families. This young veteran, only 20 years old, was talking about that. What a terrible burden to live out one’s days under such a yoke of grief, regret, remorse, guilt, anger and helplessness.

I remember when I was barely old enough to talk, my mother shaking her head and exclaiming, “I hate war!” in the same fierce tone as she sometimes said, “I hate alcohol!” She described herself as a pacifist, so I learned that word early. She loved Gandhi and Martin Luther King, and I remember her having a bumper sticker or a sign (I am not sure) that said “No War Toys.” Even though we were a family of all girls so it was not an issue for us, she was among a group of women opposed to little boys playing with guns, which it seemed like they all did. From an early age, I remember finding war horrifying, incomprehensible and frightening. I rarely watched a movie or read a book about it. In the Vietnam era, I was staunchly antiwar and active, but never quite knew or understood what was going on. Just that I hated it.

From an early age, I harbored both fascination and perhaps preoccupation with the body. Certainly my own, but really everyone’s. I was curious about sex, obsessed about food and weight, athletics, healing, all of it. I did not think I was smart enough to be a doctor, but I thought about it. In graduate school, I chose a specialization in somatics, even though back then, somatic psychotherapy did not have nearly the foundation of science and neuroscience it has now. I pored over Wilhelm Reich’s Function of the Orgasm because it integrated the essential worlds of psychology, sexuality, and politics in a way that profoundly resonated with me, those being three areas of exploration that consumed me and still do. I am gratified that the body has come to occupy center stage in the field of trauma, and even in a weird way, how the pandemic has forced us all to be mindful of the body and of health. It has also illustrated how profoundly matters of the body affect our mental health and even vice versa and worldwide.

Admittedly, I neglected the vast population of disabled or “differently abled” people. I don’t know if out of fear, denial, or simply oblivion. Another population that is invisible and forgotten, abandoned or cast out. I remember telling my husband early in our relationship, “if ever I can’t move, please shoot me.” I simply could not imagine being able to live if not fully “able-bodied.” (I am ashamed to remember it.) Our office has an elevator and a “disabled” parking space. I figured I was “doing my share.” Oy vey.

I recently heard an interview with a young woman introduced as a blind, queer, African American hip hop artist, Young Ant. She was talking about disability in the music industry, and what it is like to be a blind performer – something I had never thought about. Watching her rap and dance on YouTube was eye-opening. I had never considered how a performer finds their way gracefully onstage, dances, and looks cool moving, not to mention the accessibility issues of most or certainly many venues. Ant is on a mission to awaken the world to this.

I was impressed by the recently released movie, Box of Rain, a movie not about the Grateful Dead, but about the culture of Dead Heads, by the mention that way back in the 1970s, the Dead had a little platform in the audience at their shows for wheelchairs. That was radical in its time: the same era in which then-President Nixon killed what would have been the Americans with Disabilities Act. Many species destroy or abandon their “imperfect” young, and sadly, many human parents and fellow citizens are not much better. I am humbled to find another “blind spot” in my awareness, another big point of neglect and injustice.    

A man featured in Box of Rain, a longtime Dead Head, was Jim LeBrecht, who worked as the sound engineer for the Dead for many years. He is also a longtime friend of my best friend. Of course, I was excited to tell her about seeing Jim in this new movie. She asked me if I had ever seen another movie he had produced, Crip Camp, about a summer camp in the Catskill mountains of New York, specifically for disabled kids. I was intrigued.

Rarely have I seen a more moving and graphic depiction of the power of affiliation, what it is like to be in a group of others with a similar experience to one’s own. In the world of trauma and neglect, we are well aware of the power of the group: what it is like to be in the company of others with some sort of similar experience who understand without any words. Some of us have had the good fortune to have been in such a group and found it indescribable. I am not much of a movie person, as I always say, “I am way too stingy with my reading time,” but this one is a must-see (and it is available on Netflix).

The film also makes a powerful point of how (yes, we ever return to it) the original attachment with primary caregivers so profoundly affects the sense of self. The film opens with Jim narrating, 

“When I was born,” he says, “they did not expect me to live more than a couple of hours.” In the visual footage, a grainy old black and white home movie, we see little Jimmy as a toddler, blissfully happy, laughing and ambling, climbing and tumbling on his plump little arms. Although we do not see his parents, it appears that he feels secure and safe enough to explore widely, move and grow, even to become the teenager who has the gumption and grit to imagine and aspire, hope, and actually become the sound engineer for his favorite band. And those parents obviously got him to Camp Jened, lovingly referred to as “Crip Camp.”

At camp, everyone had one or another disability, and for the first time ever, felt free and accepted. They did what all kids do at summer camp: sports, art, music, experiencing nature and the outdoors, and communal living. With a culture of non-judgment and helpfulness, they pushed each other’s wheelchairs, carried those that needed it, and understood each other’s sometimes strained or challenged speech.   

In the larger world, apparently, there is a definite hierarchy or pecking order of disabilities, with the “Polios” at the top rung and the “CP’s” (those with cerebral palsy) at the bottom. Not here. It was moving to see how carefully and thoughtfully the “CP’s” difficult verbalizations were both listened to and comprehended, sometimes “translated” or summarized by a comrade. And my memory was jogged.

I remembered a time, the one time in my long and sweaty waitressing career, that I waited on a really famous person. I worked in a fancy place not far from UC Berkeley and had the honor of serving a large dinner party celebrating the luminary physicist, Stephen Hawking. I watched the tiny man in his wheelchair, fitted out with many super-high-tech devices to help him communicate with the throng of scientists and other intellectuals fawning over him, myself included. What a rarity in today’s “ability-supremacist” world.

My favorite part of Crip Camp was when a “CP” named Judy laughingly told the story, in her somewhat garbled speech, “I was getting older, and I did not want to die a virgin! With a twinkle she declared, “So I had an affair with the bus driver! A week or so later, I had a terrible abdominal pain. I went to the doctor and turned up a diagnosis of gonorrhea. The doctor was flabbergasted, incredulous! He could not imagine that anyone would want to f— me! As soon as I got well, I went back to school and got a master’s degree to become a sexuality educator.” Judy became an activist and vocally championed the cause of disabled sexuality. She also married happily, although she laughingly added, “my in-laws accepted me, but they said to their son, ‘couldn’t you have at least married a ‘Polio?’”

In June in San Francisco, the city is more colorful than ever, with rainbow flags billowing gaily in the wind. We live blocks from the famed Castro District, which is community and home to a large number of LGBTQ inhabitants. 

June is Pride Month, and for the last two years of the pandemic, festivities of all kinds have been toned down or cancelled, like everything else. As with all other re-openings, restoring some sort of “normal”, even if it is a “new normal”, brings a wash of feelings and memories. For some reason, I found myself drifting back to thoughts of my childhood friend, Jimmy (not his real name).

I was in 6th grade, and Jimmy was in 7th. He was a gangly, goofy smiling blond, and I was a too-sensitive, introverted bookworm. We were a pair: two invisible misfits who found each other and somehow became best friends. I would join Jimmy on his paper route, and we would spend hours pedaling our clunky three-speed bikes around the neighborhood long after the deliveries were done. We could joke, and Jimmy also had the depth that we could talk about serious things. And that we also endlessly did. 

As ever, my memory is spotty, and I don’t remember how we lost touch with each other for many years. I was in my middle 30s when I heard from Jimmy again. He had become a top fashion model in Milan. He was gorgeous; well, the glossy magazine photos of him were. But now it was the 1980s, the height of the AIDS epidemic, when it was a most terrifying and a pretty inevitable death sentence for those infected. When he contacted me, Jimmy was very sick. Once back in touch,  I spent as much of the short time he had left with him as I could. 

Jimmy wanted to talk about dying, and he said no one wanted to talk about that. We talked and talked, just like we always had. I don’t remember much at all, except how soon he died and how tragic it was. A tragedy sadly shared by many, if not all of us in my generation here in SF.

Most tragic of all, perhaps, Jimmy’s very religious parents, who had always seemed like such “nice” people and who had not known he was gay until after he got sick, distanced themselves and disowned him. They just could not accept it. He had always been invisible and disconnected from them, and now in his final days, more than ever. And then he died. Terribly neglected as a child, he was completely abandoned in his darkest and final hours. I am so sad about this and also deeply sad that my memory is so raggedly incomplete. I wish I could honor Jimmy with fuller recollection, and I wish I had it for myself.