Most of us will experience some form of trauma or wounding in our lifetime. Trauma and disability are essential parts of what make us human and what connects us to one another.
Much of who I am was shaped 33 years before I was born on a sunny February morning in Brussels, Belgium. My father was just 5 weeks old and his father, Max, was pushing him in a pram with my grandmother Lily at his side. Max saw SS officers and knew they were coming for him.
“Turn around,” Max whispered to Lily. “Take the baby, walk away and pretend that you don’t know me.” My 21-year-old grandmother saw her young husband apprehended by the Gestapo. She never saw him again; from that day forward, my infant father went into hiding in Christian foster homes. Lily survived furtively with the help of fake Aryan papers.
By the time I met them, these core traumatic experiences had been calcified into their beings: It became braided into my father’s terrifying rage and my grandma’s agoraphobia. It was evident in the way my family told its story and in the silences where dangerous truths lived.
There is good evidence that the trauma of the Holocaust and other atrocities brings about cellular changes in the children and even grandchildren of survivors. A growing body of data finds epigenetic (non-biological influences on the way genes are expressed) impacts from trauma. But even before I knew the science, I knew that I had been molded by violence and heartbreak. I tasted it in our food and in the nourishment withheld. I felt it in how I was held and how I was not. These brittle injuries formed my nervous system, my brain, the parasites in my gut.
As is so often the case, trauma impacted my parents’ emotional limits and capacities to parent, and became interwoven with the neglect and abuse I experienced in my own lifetime. And like many people with complex ancestral and childhood trauma, I got sick and stayed sick. I have Lupus, an autoimmune disease correlated with trauma. War veterans and domestic abuse survivors are statistically more likely to develop it, as are people of color and cisgender women. There is not medical research on transgender and non-binary people and Lupus, but anecdotally it is clear to me that we also suffer from high rates of autoimmune disease that is linked to trauma. We are literally sickened by our historical, systemic and present traumas.
My worst autoimmune flare hit in 2013, when I was 38 years old, and I had built a more stable life for myself than I had ever experienced as a young person. After decades of guarding against traumatic wounding, I suddenly found myself in a safe, sweet home, with a loving family I had created. I felt like my immune system was like an abused shelter dog that had finally been adopted and would defend that home fiercely, even if that meant biting the mailman. My immune system was attacking friendly tissues and membranes in a misguided, but fierce defense of me.
Trauma and disability are inextricably related in multiple ways. For some of us, like me, the onset of our disabilities and chronic illnesses can be linked to traumatic wounding from accidents, environmental injuries or the repeated stress of chronic abuse. For all disabled people, living in an ableist world is itself traumatizing.
The lack of access to the people, places and things we need to survive due to ableism is injurious, physically and psychically. Visibly disabled people suffer the ordeal of being objectified and condescended to in all areas of life; those of us who are invisibly disabled experience constant disbelief from medical professionals, disability lawyers and other authority figures. Every year, on March 1, the Disabled Day of Mourning honors disabled people murdered by their family members. There are more than 500 people recorded as killed in the last five years alone, and many more whose deaths go unmarked.
Disabled people are likely to have experienced trauma. And traumatized people are likely to become disabled, which means if you want to welcome disabled people to your community, you need to grapple with the impacts of trauma. For example, the ways we may get triggered, our resilience and the multiple kinds of wounding in the room. It also means, in conversations about trauma, disabled people and our wisdom should be central to the conversation. And the room where the conversation is happening needs to be accessible!
Disability Justice is a movement born in the early 2000s with the leadership of disabled queer people of color like Patricia Berne, Mia Mingus, and Stacey Millbern, to name just a few. A Disability Justice-based definition of ableism by Talia “TL” Lewis isA working definition by Talila “TL” Lewis in conversation with Disabled Black and other negatively racialized folk, especially Dustin Gibson; updated January 2020 :
A system that places value on people’s bodies and minds based on societally constructed ideas of normalcy, intelligence, excellence and productivity. These constructed ideas are deeply rooted in anti-Blackness, eugenics, colonialism and capitalism.
This form of systemic oppression leads to people and society determining who is valuable and worthy based on a person’s appearance and/or their ability to satisfactorily [re]produce, excel and “behave.” You do not have to be disabled to experience ableism.
Unlike the older Disability Rights movement, Disability Justice doesn’t just advocate for the full and equal inclusion of disabled people, but honors the unique ways we move through the world, and rejects racist, conformist notions of “normalcy” in how we ought to look, behave and produce. Activist Eli Clare explores the complexity of pursuing normalcy through cure in his book Brilliant Imperfection.Clare, Eli, “Brilliant Imperfection: Grappling with Cure,” Duke University Press, 2017 Though we may seek cure to alleviate the suffering of a cold or to fix a life-threatening injury, cure as a go-to ideology when encountering chronic illness and disability eradicates difference.
Clare discusses why he would not take a hypothetical “magical pill” to cure his Cerebral Palsy:
“On mountain trails … I drop down onto my butt and slide along using both of my hands and feet, for a moment becoming a four-legged animal. Only then do I see the swirl marks that glaciers left in the granite, tiny orange newts climbing among the tree roots, otherworldly fungi growing on rotten logs. My shaky balance gives me this intimacy with the mountain. I would lose so much if that imaginary cure pill actually existed. Its absence lets me be unequivocal. It opens the door to brilliant imperfection.”
Clare’s perspective resonates with me deeply. During my longest Lupus flare, I lived mostly in bed for four years. I was surrounded by voices of doctors, friends, family and the media, telling me to “fight” against my illness. This felt bad to me in many ways. To begin with, cure was impossible to achieve; the “chronic” in chronic illness means that sometimes, people just stay sick. And there’s no aggressive medication, meditation or kale smoothie that can magically cure it. Furthermore, I knew that trauma was a factor in my overactive immune system. After a lifetime of surviving trauma and an ancestry of war, the last thing my immune system needed was more militarized metaphors. Instead, what I needed was rest and acceptance of my body as it was.
As a dog owner, I knew that if my immune system was a traumatized and abused dog, what it need was not domination, but care, love, gentle voices and a mat to call its own.
Eventually, I stopped pushing for a cure. I stopped trying to “overcome” disability, and started to live a full sick and disabled life. As the pace of my outer life slowed, my inner life expanded in unexpected ways. Some days, being chronically ill just really sucks; on other days, it offers stillness. Empathy. Solitude. The tender intimacy and vulnerability of receiving care. I am grateful that my pain and discomfort have now eased, and that I no longer live my life in bed. But sometimes, I miss the profound and painful spirituality of bed life.
Trauma, especially chronic and sustained trauma, tends to shape us in lasting and painful ways. Some of us self-harm or think about suicide; some of us long for love and safety, but get triggered and push away those who love us most; many of us have flashbacks that bring back our worst moments, leaving us disassociated and missing out on some of our best moments. When our bodies struggle to assimilate the stressors of a traumatic childhood, chronic illness and disability easily take root.
Like most other survivors, I sometimes feel shame about still not being “over it.” But trauma is woven into my bones and sinews, as well as my neshamah (“soul”) and my relationship with God. There is no “cure” for the fabric of who I am. I choose to embrace the idea of healing, as opposed to cure. Healing integrates and embraces all the ways we are broken, whereas cure aims to “fix.” I have found that with time, care and love, my trauma doesn’t shrink, but the capacity of my body and soul does grow, making these types of painful trauma responses a proportionally smaller part of my life.
Leah Lakshmi Piepzna-Samarasinha discusses a Disability Justice approach to trauma in her book Care Work.Lakshmi Piepzna-Samarasinha, Leah, “Care Work: Dreaming Disability Justice,” Arsenal Pulp Press, 2018 Piepzna-Samarasinha talks about living fully without necessarily “getting over it”:
When I was a young survivor, I would ask my counselors when ‘it’ would get better, when ‘it’ would be gone … I was horrified when one gifted and lovely therapist gently told me that ‘it’ would never fully go away, but my life would and could transform so much I wouldn’t even recognize it, and my experience of pain, trauma, and abuse memories would also transform.
My counselor was trying, as best she could, to convey what I would later learn though years of listening to and shape-shifting chronic pain: our experiences of pain and trauma can completely transform when we have access to community, tools, support, and different stories and narratives.
These words speak deeply to me as I use the gifts of Jewish community, and the spiritual tools and stories of our tradition, to live with and companion others with trauma. I have found that wounds fester in isolation, but when placed in the center of the sanctuary, they can become sites of spiritual growth. Judaism is filled with examples of publicly honoring wounding. From Passover and its story of oppression and bondage, to Tisha B’Av and its heart-rending lamentations, almost every Jewish holiday honors moments of wounding in Jewish communal history. Diaspora itself is a site of traumatic displacement and loss that is woven into the very fabric of rabbinic Judaism.
On Rosh Hashanah, we read the story of Abraham holding a knife over his son Isaac’s throat, nearly murdering him. According to the Jewish tradition, Isaac was impacted forever from this trauma. Sarah, his mother, died of a broken heart; the cries of the shofar we hear throughout the Jewish High Holy Days echo her gut-wrenching cries of despair upon learning what her son had suffered at his father’s hands.Midrash Pirkei De-Rabbi Eliezer, Chapter 31
Though our traditions allow room for these stories, we don’t often cultivate space for contemporary stories of trauma and the very real human imperfection that follows. Where are the prayers for the triggered? The public blessings for coming back from a dissociative state? How many synagogues, after reading the story of the binding of Isaac, hold honest conversations about familial abuse and its impacts? How many Jewish schools and agencies have personnel policies that allow space for the kind of slowness, imperfection and humanity that recovery from trauma demands?
Trauma is central to who we are as a Jewish people, and impacts so many of our individual stories. Disability Justice can guide us in thinking more holistically about the holiness of our brokenness. The Hebrew word for “holiness,” kedushah, is most literally translated as “set apart.” From my perspective, that which keeps us from “normalcy” is that which sets us apart, or makes us holy: the limp, the scar, the trigger, the wound.
This does not mean that trauma and disability set us apart from common or “normal” human experiences, but rather from the concept of “normalcy.” In fact, most of us will experience some form of trauma or wounding in our lifetime. Unless we die very young in an accident, almost all of us will experience illness and disability as we age. Trauma and disability are essential parts of what make us human, and what connects us to one another. Those with more trauma and disability carry more of the burden of stigma and ableism, and yet these are near universal human experiences.
So, too, many of the things the Torah refers to as kodesh (“holy”) are extremely common. Shabbat, the day of holy rest, happens every week and each corner of every field, is to be left fallow, for those who need to eat as an act of holiness. These things are common and yet set apart from “normalcy,” a break from the mundane grind. So, too, the broken parts of our souls are set apart from the everyday. Clare refers to these places as our “brilliant imperfection.” The Kotzker Rebbe, speaking in the 19th century, gets at this concept through a Jewish spiritual lens: “There is nothing as whole,” he says, “as a broken heart.”
When my child was born in 2018, I remember wanting to protect him from the parts of myself that have been traumatized. I wanted him to only know me as a “perfect” parent without my wounding. Within a few weeks I realized that if I protected him from knowing any of my brokenness, ironically, he would also never get to know me as a whole person. The part of me that has experienced trauma and is healing makes me human, tender, vulnerable, fallible, real. L’dor v’dor—“from generation to generation,” from teacher to student, from friend to friend, when we share our wounding and our healing, we share ourselves.
|↑1||A working definition by Talila “TL” Lewis in conversation with Disabled Black and other negatively racialized folk, especially Dustin Gibson; updated January 2020|
|↑2||Clare, Eli, “Brilliant Imperfection: Grappling with Cure,” Duke University Press, 2017|
|↑3||Lakshmi Piepzna-Samarasinha, Leah, “Care Work: Dreaming Disability Justice,” Arsenal Pulp Press, 2018|
|↑4||Midrash Pirkei De-Rabbi Eliezer, Chapter 31|