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?’”
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.
Our dad, when he had throat cancer, required a complicated surgery where they had to break his jaw and build a new one, out of steel. Always vain and proud of his strapping good looks, he was now disfigured. He was 50. Amazingly it did not seem to phase him (the insulation of narcissism?). Years later, I even asked him about that. He said it never bothered him. By then, he was fond of saying, much like Keith Richard, “I’m happy to be here! I’m happy to be anywhere!”
I once had a client who finally accepted his history and the idea of being a survivor of childhood neglect. He said, “I want a disabled placard for my car that says “Child of Neglect!” It is a blessing and a daily challenge to accept who we are.
Have a look at Young Ant rapping and dancing with her white cane. And thanks Jim!
Today’s Song:
My book “Working with the Developmental Trauma of Childhood Neglect: Using Psychotherapy and Attachment Theory Techniques in Clinical Practice” was published on August 31st. It provides psychotherapists with a multidimensional view of childhood neglect and a practical roadmap for facilitating survivors’ healing.
When the lockdown began to lift in our area, and I could begin to see clients live and in person I was ecstatic. As a somatic therapist, a self-identified “emotion hound,” and one who receives tremendous amounts of information about people through the energetic unspoken, remote work has been a strange and challenging journey for me. Apart from the inevitable headaches of technology, I later read, that the energy required to focus extra hard, and try to excavate that missing information in the inanimate screen, explained my splitting headaches at the end of the workday during those first months. I have since almost gotten used to it, or at least found a way to co-exist with it. Zoom has become a surprising component of my own “new normal.” I was also amazed to discover the difference when I began to see people live again. Some clients I had never met in person, having started our work during the Pandemic years. It was not surprising to me, but still somehow stunning to feel the difference both in our relationships, and in our progress.
I was also somewhat surprised when some people preferred to continue to work on Zoom. I can see the convenience factor of staying free of the travails and uncertainty of Bay Area traffic and parking which has ever been a “first world” frustration for me; as well as the blessing of saved time. The Pandemic factor as well, made sense to me, with none of us quite knowing the most prudent ways to proceed, especially those with delicate immune systems or other medical complexities on board. Still, in that still familiar neglect default, of thinking everyone would think as I do, I rather expected everyone to be as delighted as I was. When one client finally agreed to come in person, there was a way that he “opened my eyes.” He has a visual impairment, macular degeneration, which I knew about. I was empathically attuned. At the end of our first in person session, he groused, “So what is the big deal about live sessions?” Blinded by my own enthusiasm about being able to see him, it had not occurred to me, when he said “I can’t see your facial expressions. I can see your outlines, it is not very different for me.” This is a man who had been an avid bookworm all his life, he loved art and had toured the world’s great museums, and spent hours sometimes before one painting. Now that was gone from his life. I thought I had understood the grief of that. Forgetting about the lost world of facial expression, and how much that is part of relationship and true connection, I was stunned. This man had a devastating neglect history already. How could I have failed to see yet again?
As a long time restaurant worker, I have been pointedly aware of the deathly hit the restaurant world has taken during this last almost two years. Here in San Francisco where food commands an almost religious devotion, restaurants have been fighting for their lives, in a market that was fierce to begin with. Many have sadly shut their doors forever. As a baker, home cheesemaker and lover of food, I have followed the march of local food history, at least what is available of it, often while I stir the vat or feed my sourdough starter. I have wondered how my teachers and gurus who are not in the news, have fared. I must often just content myself with their tattered and increasingly worn cookbooks.
For me, one of the great blessings of this time, has been the plethora of emerging webinars and podcasts, not to mention the riches of Youtube with which I had never made more than a casual acquaintance before. I have been infinitely grateful for them, and routinely look for opportunities to see and acknowledge the unsung, the neglected heroes of administration and technological genius that bring them instantaneously into my kitchen with a few clicks. Trying to keep the neglected in view, I make a point of reaching out to customer service people, tech support people and Zoom presenters, even sending them cheese when I can! (It is the best way I know to say “thank you!”) Some parts of that I do not want to lose, and it is not clear how the culture, including my own little “culture” will change.
One of the advantages of my challenges around sleep, is that I am often up at odd hours or all hours. I hear NPR stories I might never have heard. Often the “stories” annoy me, as all day long I hear stories that are plenty interesting and enlightening. However I recently heard one that seemed to connect many brain regions that have never connected before, to form a wild and bright new network of thinking. I don’t even remember how it began.
I love music and I always have a song in my head. By now my clients are amusedly (or annoyedly?) accustomed to my lapsing into song during their session. “Let it Be,” “There’s a Hole in that Bucket,” “You Are My Kind,” oy vey! I rarely go to concerts anymore, even before the lockdown, but there is always a concert inside. I am not up to date on any music later than about 1985 or so, and admittedly I would barely be able pick Taylor Swift or Lady Gaga out of a lineup, although I follow the news. Madonna is perhaps my cutoff, and she is close to my age, at least parts of her are! So an interview with a young musician whose name I don’t even remember, was enlightening. In the course of talking about returning to live shows, he began talking about disability access to concerts. Again, I was rattled by my neglectful blindness to even thinking about these issues. When he referred too “Ability Rights Activists,” I realized I had never given a much thought to those people. Our office has an elevator. I thought I had that one covered. What about those who can’t hear or see? -In the literal sense. What about my own failure to hear or see them?
Feeling unseen and especially unheard has been an area of preoccupation for me, long before I began to study it in the attachment/clinical sense. In the stage of relationship havoc between my husband and myself, his failure to hear me was a redundant relationship refrain and frstration. As he began to lose his hearing literally in the expectable middled aged way, it became more so. Then began my echoing grumble about his getting hearing aids, thinking they would be the magic cure. When he finally got them and even began to use them, I started to recognize my own lousy hearing. When I finally got tested, I was diagnosed with severe hearing loss and got my own hearing aids prescription. Fortunately I have the resources to get them. Ironically, although hearing loss is a predictable predicament of aging, Medicare does not cover them! What a difference! I can hear! If only such a device were available to make the unheard heard!
It was suggested to me, that we prepare an audio version of my new book. When I asked my publisher, she said we must wait and see if there is a market for it. Of course I understand the necessity of the economic. We are all trying to make a living during these odd times. My esteemed colleague and friend Dierdre Fay, and her devoted husband and partner, read her new bestseller themselves, and made their audible version that way. When I asked my publisher if I could do that, she suggested we start with feeling out if there is a market. I am not sure what the tipping point is that constitutes a market. I have asked that interested or concerned readers, include their request in their Amazon Reviews should they submit one. I now sheepishly see the oxymoron in that as well. Those who are vision impaired may not be able to use the majority means to be heard.
For some of us it is a convenience or pleasure issue, like for me, it is an enhancement. For others it is a neglect issue, about being forgotten and left out yet again. Again, I ask those who are able, make yourself heard on this issue, to me or to Amazon! I have even received a similar request about the blogs. Let us know!
Neurotypical, Cisgender, Antiracist, Latinesque, Color, Differently Able, Aged, Neglected… Trying to keep it all in view., even as the Pandemic and Afghanistan overwhelm the senses. I guess I have been holed up in my own tunnel vision about those who are not seen and heard, while missing entirely, or almost entirely, the literality of both sides of the equasion: seen and heard. Until now. I think I need to go back to my publisher and say that this is a social justice issue, at least letting me do it myself, to make equal access available. Yes it is just one book, but isn’t that how all the social movements swell and progress? One little book or lunch counter at a time?
Thank you yet again NPR! I will have to see if I can find the young man who made that podcast, so I can thank him! And ask him my perennial question, “Do you like cheese?”
My book “Working with the Developmental Trauma of Childhood Neglect: Using Psychotherapy and Attachment Theory Techniques in Clinical Practice” is now available online. It provides psychotherapists with a multidimensional view of childhood neglect and a practical roadmap for facilitating survivors’ healing.
My course with Quantum Way is now available for registration!