To honor Disability Pride month, Sandy Goodwick and Lou Lusk share how WRAP has enhanced their lives.
Disability Pride . . . Finding My Voice
By Sandy Goodwick, Certified WRAP Facilitator, retired teacher/advocate
“Sandy’s germs! No returns!” said Gail (or Linda, or Nancy…). SLAP! as my “germs” were passed along to another classmate. This “germ sharing” (and soul destroying) scenario was duplicated countless times during my grade school years, along with smirks, sneers, and intense social isolation.
And I… didn’t say a word. I took it because I believed it. After all, I was the only one who was different in noticeable ways—misshapen legs with ugly orthopedic shoes, glasses, and facial paralysis. I had no facial expression. I was born with Moebius syndrome. But I grew up knowing absolutely nothing about why I couldn’t smile. It was an unmentionable topic. I thought I was the only one on Earth who couldn’t smile—until I learned the diagnosis at age 22.
Strange that doctors never bothered to tell me when I was first diagnosed at age 13. Back then, I thought that I was simply too weird to even have a diagnosis.
The adults in my life essentially left me to deal with everything on my own. (“You’re just feeling sorry for yourself.”) They merely reflected the knowledge of that era. I felt intense guilt from bringing unknown challenges into the family.
All this ultimately morphed into an abject dread of even talking about the realities of my individual differences—a fear which took many years to gradually unravel.
Chances are, you know someone with a facial difference/disfigurement, as about 10 percent of Americans live with a visible scar, blemish, or disfigurement. “‘We’ (people with facial differences) are the ‘marginal’ or forgotten people that the disability world ‘forgot,’” according to Frances C. MacGregor, an acclaimed social scientist.
I agree. As a grad student in special education, I wrote a letter to the editor when I learned of “research” in a textbook that deemed my facial disfigurement (“a frozen or rigid facial expression”) “undesirable.” I had already successfully taught with this “undesirable” form of “nonverbal communication” for 22 years.
My letter was published in subsequent editions. Later, a professor (whose recent dissertation focused on social/psychological issues of kids with physical disabilities) was stunned to learn—via a paper I wrote—that children with facial disfigurements also need social/psychological support.
It’s important to know how facial disfigurements affect people, especially the folks who may join a WRAP group. Most importantly, an individual’s distress in having a facial disfigurement is not related to its severity. Saying, “I don’t notice your __________” diminishes your opportunity to understand just how that facial difference is experienced in an emotional sense.
Sadly, many who offer “you’re beautiful!” to those hurting from stares and damaging words are parents of kids, teens, and adults with facial disfigurements. This works to silence a much-needed sense of being heard.
Be aware of the power that beauty (and its absence) plays throughout our lives. Babies with malformations of the mouth and jaw (cleft lip and palate) are 40 percent more likely to be abused by their second birthday than those born without birth defects. (Certain birth defects linked to abuse of infants and toddlers, Lisa Rapaport, Reuters Health, November 30, 2015).
Children born with appearance anomalies experience a double jeopardy: medical limitations from the condition and stigma. Parents who fail to invest in a stigmatized child will emotionally withdraw, failing to bond (Thriving in the Face of Childhood Adversity, Daphne Blunt Bugental, 2003).
In Zara Stone’s book Killer Looks: The Forgotten History of Plastic Surgery in Prison, she writes of beauty being a valuable currency within society. “The benefits the conventionally good-looking receive include higher salaries at work, better service at bars, and shorter sentences in court. They’re fined 174.8 percent less for serious misdemeanors, and they’re convicted less. The beauty premium begins at birth. Attractive preschoolers get more one-on-one time with their teachers, attractive middle schoolers get more flexibility with their grades, and when they act out, they’re more likely to be called ‘high spirited’ than badly behaved.” (2021)
When historically ignored traumas accumulate and there is no support, people lose hope and die.
In 1994, I finally found someone whose experiences with Moebius syndrome included childhood adversities like mine. We both knew the toll of bullying and hurtful words. About 5 years later, my friend took his life the day before he was to travel and see family members. Sadly, others with facial differences have also died from despair.
This scenario becomes maddeningly frustrating because the nonprofits that bring us all together have been largely oblivious to the very real experiences that many of us have gone through. Facial disfigurement nonprofits in the United States are largely parent-controlled and the focus is largely on the “medical model,” with scant attention paid to discrimination (and none to effects of childhood adversity).
In Pete Walker’s book Complex PTSD – From Surviving to Thriving he writes that the majority of dysfunctional families have a similar dynamic: “. . . parents disdain children for needing any kind of help or attention. . . . verbal and emotional abuse forces the child to so thoroughly identify with the critic, that it is as if the critic is his whole identity.” (2013)
I’ve been in a variety of disability group “silos” where only people with hearing loss, or facial difference, or emotional distress gather. And guess what? When we are really getting into issues, there is a commonality there—the need for genuine, authentic, emotional validation and being heard.
This is why WRAP is so incredibly valuable—the silos that are used to separate disabilities can come down, and people have the opportunity to build individual plans that honor mutually shared hopes.
As someone who has accumulated disabilities throughout my life, I hope to tear down that hypothetical wall that allegedly divides “physical” disabilities from “mental” disabilities.
“One does not walk into the forest and accuse the trees of being off-centre, nor do they visit the shore and call the waves imperfect. So why do we look at ourselves this way?”
— Lao Tzu (400 BC)
WRAP and What It Has Done for Me and My Combat Service-Connected Disabilities
By Lou Lusk, Master Sergeant and Certified WRAP Facilitator
WRAP showed me that as much as I truly wanted to help veterans dealing with crises and the demons I also battle, I still needed to fix myself further before I could truly help others—most importantly, I needed to address my severe PTSD, traumatic brain injury, self-medication issue with alcohol, and my severe anger issues.
I almost lost my fight by attempting to take my own life. I still dealt with a lot of survivor’s guilt, along with having to live with the truly evil person I believed I was while during my seven combat deployments.
My company, in which I’m a partner, teaches active shooter survival skills. One psychologist calls what I am dealing with “survival mindset.” This person asked me to read a book written by Col. Dave Grossman, a psychologist in the U.S. Army, called On Killing.
Col. Grossman describes three types of people in the world—the sheep, the wolves, and your select sheepdogs. The sheepdogs protect the sheep from the evil wolves. However, he says that sometimes in order to take out the evil wolves, the sheepdogs must turn into wolves themselves so they can eradicate them. This analogy helped me better understand the “evil person” I was on my deployments. I credit WRAP and Col. Grossman’s book with helping me deal with this issue a lot better.
I still have issues with survivor’s guilt, but I’m still working on it and talking with other veterans. Helping them and exposing my issues also helps me work on my issues.
WRAP has also helped me with my self-medication issue. I made a promise to my WRAP Facilitator and myself during the training that I would refrain from drinking that week. This showed me I had control over my issue, and I’ve cut my usage way back since then.
WRAP also showed me there were other outlets to channel my anger issues. I’m sorry to say that even today this is an ongoing challenge for me and my family. Whenever I lose control of my anger by lashing out irrationally, I apologize to my wife and daughter. My wife, God love her, always tells me she knows who she married. So WRAP has helped, and saved, my marriage and family. I truly hope to keep paying this forward by helping out my fellow veterans in need.
WRAP Associate at Advocates for Human Potential, Inc.
