“The wound is the place where the Light enters you.” — Rumi
In a crisis, my focus narrows. Time slows down. I can no longer think about next month, next week or even tomorrow.
There is only right here and now.
In a crisis, I cannot see the forest for the trees. Sometimes I can’t even see the trees for the needles.
But when the adrenaline leaves my body, when the trauma gets processed, my gaze gets higher. I see beyond the crisis, I see beyond my family, I see beyond my circle of friends.
When my vision widens, I see scores of women giving birth in less-than-ideal conditions, saddled with issues they never saw coming. I see them chewed up and spit out by a disjointed health care system, and, ultimately, joining the ranks of the distrusted, dismissed and devalued.
Taking an even longer-term view, I see how these daily, individual battles that mothers have to wage on behalf of their children add up to ableism writ large — children who become adults in a world that still sees disabled people as other, less-than, and maybe even dangerous.
Human beings are hard-wired to revert to less-nuanced thinking when we are stressed. This tendency towards a black-and-white view of the world is made worse by an overload of information. We shut down. We can’t process it all, so we take short cuts. We rely on friends’ conclusions, or we only read headlines, or we jump to conclusions about attitudes.
Let’s be clear: This is not a one side or the other side thing. It’s EVERYONE. Young, old, black, white, brown. It is a fundamental part of being human. You do it. I do it.
I was first introduced to trauma as a clinical concept with the book The Boy Who Was Raised as a Dog by Dr. Bruce Perry. That book opened my eyes to the trauma response as a predictable neurological pattern.
I know there are those who think “trauma” is overused and should be reserved for intense psychological stresses, such as those experienced by war veterans and rape survivors. But trauma responses are predictable patterns of behavior that can stem from even from relatively minor stresses. In his book, Perry describes a study that found that mice that were simply picked up by a human in the first few days of life were sufficiently traumatized to react differently to stresses in adulthood.
For parents of disabled children, their specific brand of trauma often starts in the Neonatal Intensive Care Unit. A 2019 review in The Journal of Perinatal and Neonatal Nursing found numerous stresses associated with a NICU stay. That might not surprise you, but maybe this will: According to a 2013 study, the “shattered expectations” that parents experienced were not related to the type of disability their infant had, “but rather to prolonged uncertainty, lack of agency, disruptions in meaning systems, and alterations in parental role expectations.”
In other words, it’s not the disability itself that is the problem. Parental stress appears to stem largely from the systems and environments humans have constructed around disability.
The negative impact of what I call Special Needs World continues as the child gets older. “Evidence continues to suggest that parental maladjustment is often more associated with variables not related to the child but instead to problems accessing information, resources, and environmental/social supports,” reads this 2012 study out of Texas A&M University.
The psychological impact of trauma is still a new field of science. Adverse Childhood Events (ACEs) are the most common area of trauma study because of their long-term impacts. There is also a growing field of study of the intersection of race and trauma.
Unfortunately, I cannot find much formal research about the chronic trauma that those raising disabled children experience. This dearth is something scientists have noticed, too.
“…the family side of having a child with a disability has traditionally been neglected in research…,” the Texas A&M researchers noted. “This is troubling because the unit of society most affected by having a child with a disability is the family….”
After talking to many mothers, this psychologist believes the trauma they experience is real; this medical mama wrote about her own formal diagnosis of Post-Traumatic Stress Disorder; this medical mama rightly opines that she does not even want to think about her life “post” trauma because then it will mean her daughter’s life is over.
Those are just anecdotes, but I know the phenomenon is real. I’ve lived it.
The good news is that there is a way out of this forest when we are finally able to see past the trees.
An Israeli study out this year found that 63 percent of parents of disabled children reported post-traumatic growth. These parents found either greater appreciation for life, strength they didn’t know they had, better relationships or other positive changes.
Indeed, this 2014 review of 55 studies found post-traumatic growth among those raising disabled children was common, but not well-understood. Researchers found that parents experienced positive changes based in part by demographics and personality, but also on their communities of support. They advised further research.
If you are reading this newsletter, you are that community of support. We owe it to that endless parade of newly traumatized mothers to push for policies that support them in ways that we were never supported.
Medical Motherhood’s news roundup
As of April 2021, an estimated 113,708 U.S. children experienced the loss of a primary caregiver (parent or custodial grandparent) due to COVID-19 or related deaths.
Among the 21 included countries, 1,217,648 children were orphaned or bereft of their custodial grandparents or other co-residing grandparents (table 2). Rates of children losing primary or secondary caregivers were highest in Peru (14.1 per 1,000 children), South Africa (6.4), and Mexico (5.1).
NPR's reporting over the past two years has shown that a fraction of eligible borrowers have been getting the relief they're entitled to under the federal Total and Permanent Disability Discharge program, which dates back to 1965. In fact, many borrowers didn't know they were eligible at all.
• From The New York Times Opinion (Feb. 2021): Where’s the Vaccine for Ableism?
A Jan. 20 article published by the media watch group FAIR finds that ableist perspectives on disability in the pandemic have been elevated by the media, while disabled voices have largely been sidelined. Many people aren’t very bothered by the deaths of people like me, but this callousness is contrary to their own self-interest. Anyone could become disabled in the split second it takes for a tire to blow out on the freeway, or to inhale a microbe...
...the realities of science and the body are that we are all connected, and we need one another in undeniable ways. The virus is feeding off our most intimate social connections: our need for touch, love and help as we become disabled and as we age. Viruses flourish because each bite we take depends on hundreds of other hands, and each breath we exhale could be someone else’s inhalation.
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