From Stigma to Strength

From Stigma to Strength

 

She lives on the reflections of herself in the eyes of others.

She doesn’t dare to be herself.

-AnaisNin

 

A baby girl was born with a cleft palate. There was no cleft lip and no other craniofacial abnormalities. Her mother did not smoke, did not take medications known to affect the nervous system or cause such birth defects.  There was no family history of early fetal development abnormalities. Why the palate failed to fuse during the second to third month of fetal life is unknown.  Of course, the baby had feeding difficulties, but the parents lived near a city with a special children’s hospital with highly dedicated pediatric surgeons. They repaired the cleft palate at age 14 months. There was no need for any cosmetic surgery. Other than this problem the baby thrived, met all developmental milestones ahead of schedule. She was bright, energetic and beautiful. For this true story we will call her Sara.

The only mark or sign of Sara’s developmental problem was the quality of her speech. Despite a team of providers being aware of a potential speech impediment, providing intensive—essentially exhaustive—therapy, Sara had a hollow nasal quality to her speech. Sara’s speech was not difficult to understand at all. It was just different.  Sara did not appreciate that she was different until children told her there was something wrong with her.  Over time she acquired a series of nick-names: like echo or garble mouth; eventually she was constantly referred to as “Garble.”  Sara felt the pain of this stigma, but learned to not show the anguish she experienced. Her parents were devoted, but did not learn about the label and anguish Sara experienced until the 10th grade when Sara was not chosen for the debate team.   Sara had only a few friends; most of her activity was solitary. She was her school’s top cross-country runner. Taking some pride in being considered a “dweeb,” she did not date, but attended her senior prom with a boy who would now be considered a real nerd. She was designated the Valedictorian of her high school class, but she declined to give a graduation address. However, during the ceremony she was recognized as having the highest grades ever recorded at the school. When asked to stand a student called out, “Way to go garble.” The standing ovation she received did not soothe or cover her pain.

As expected, Sara persevered. She graduated from college with honors, attended medical school and trained as a pediatric surgeon. She is now on the faculty of the same medical school; She is known as a world expert on craniofacial surgery in infants. Sara recognized her mood disorder when she was in high school, but did not seek evaluation or treatment for her chronic depression until she became pregnant. She then sought help because she did not want her children to be like her.  She placed one condition on entering therapy:  No one, except her husband, was to know. She told me, in what I considered a completely normal manner of speech, “I have accepted and overcome the stigma of my speech problem, but I will not be able to handle being marked as a head case.”  Since early childhood she had the strength to overcome the stigma of a physical impairment. Then, as she entered therapy she was stigmatizing her self for having a mental illness. She was convinced, even within her own medical community, she would be shunned or avoided if it was learned she was depressed.

In the years since Sara’s childhood our culture has matured and come to accept and understand physical problems and defects are normal aspects of the human condition.  Today, HIV patients are hugged in public and even Leprosy is understood to be an infectious disease to be treated, and not a mark of evil.  But when it comes to mental illness we are still in the dark ages.  Mental health is still in the shadows and in most situations the open discussion of feelings and emotions is still considered a taboo. The mental health disciplines—psychiatry, psychology, counseling, and psychotherapy—are, in many cases confused with Exorcism or black magic. This stigma remains a major confounding factor for patients, families and the public in general.  For example the President of the United States, in conversation with Russian diplomats, referred to the former Director of the FBI as a “nut case.”

In my youth, just out of the Bronze Age, I may have heard the following children’s rhyme a thousand times: Sticks and stones may break my bones, but words will never hurt me. This rhyme, a rose colored but foul smelling aphorism,  is described by Wikepedia asan attempt to persuade“the child victim of name calling to ignore the taunt, to refrain from physical retaliation, and to remain calm and good-natured.” Unfortunately this cautionary advice is totally and ludicrously wrong. In fact, words do hurt, and can penetrate deeply into our identity; leaving, most often a festering boil of emotion, injuring the soul. Or, if there is some form of healing, there remains a scar, a mark, a label; often a symbol of disgrace or infamy. This is an ancient process: “And the Lord set a mark upon Cain”-Genesis, in other words, a stigma.  This branding constitutes the ongoing social stigma of mental illness and often leads to suicidal ideation. Without confronting and transforming the shame of stigma we will not impact the growing epidemic of suicide. Our goal is to turn the stigma into strength.

A word originating from the Latin, stigma, was a mark or brand, especially one that marked a slave; a stigma indicated a person as inferior and flawed:  a set of negative and often unfair beliefs that a society or group of people have about another person. In all its various manifestations, stigma is a form of discrimination. And, in regard to mental health impairments the stigma is particularly invidious and often deadly.  Stigma is a major part of the silent and secret epidemic of suicide.  Stigma is not genetic, congenital, infectious, or contagious; it is not the result of a weakness on the part of the victim. Stigma is a malicious and malignant form of cultural discrimination. From adults children learn to project malevolent malice on others as a means of avoiding fear of the unknown. Stigma is a way to wish adversity and even evil upon others based on the misguided belief that being different, particularly in regard to thoughts and feelings, indicates a damaged defective soul. Stigma is always negative, implying an insidious  contagious character flaw in another person. Multiple aspects of the branding or stigmatizing process must be understood so we can change stigma into strength.

First there is double jeopardy in the projection of a stigma upon an individual with a mental illness. For various reasons, quite often multiple explanations, the person has lost a sense of self-worth. Most often this is due to some form of trauma: physically or emotionally, and compounded by medical, social or psychological predisposition. Then, this struggling person is traumatized again, or re-traumatized, by being marked, labeled or stigmatized as being weird, crazy, a head case, unworthy, worthless, possessed or even demonic. Unfortunately, a person who is the object of these various designations is defenseless and begins to believe they are, indeed, worthless and hopeless. They lose their voice to express their anguish.

Second, within the process of stigmatizing, there is a strong element of a psychological phenomenon called “projective identification.”  This important mental interaction, often inappropriately relegated to the psychobabble trash bin, is a challenge for both the accuser or projector, and the individual who is the object or target of the accusation. The projector, if you will, is motivated by their own dysregulated emotions related to ignorance, fear, envy, shame, despair, guilt, abandonment or loneliness, resulting in resentment and retaliation upon the vulnerable.  Unfortunately, the target of the stigmatization, struggling with their own tenuous sense of value, purpose and meaning, mistakenly take on the projected identification and own it; adding the weight of the branding to the baggage they carry.  For an experienced psychotherapist the concept of projective identification can be a valuable therapeutic process. For our process, turning stigma into strength, recognizing the devious features of projective identification can turn confusion and bewilderment into clarity and determination.

Third, to turn stigma into strength, it is absolutely essential we understand stigma is a cultural—societal--and community rooted phenomenon. It is closely related to shared values and behavior of a society. Unfortunately this is a universal human emotional process that is gaining strength by the estrangements of our modern technologies and the poorly understood consequences of our wavering lines of communication.  In his book, “The Better Angels of Our Nature—Why Violence Has Declined,” Steven Pinker writes “By the late 20th century, the idea that parents can harm their children by abusing and neglecting them (which is true) grew into the idea that parents can mold their children’s intelligence, personalities, social skills, and mental disorders (which is not). Why not? Consider the fact that children of immigrants end up with the accent, values, and norms of their peers, not their parents. That tells us that children are socialized in their peer group rather than in their families: it takes a village to raise a child.”  Thus, the effort of Natalie’s Light to change stigma into strength is focused on promoting and changing cultural and societal perspectives within the community.

Dr. Pinker, a Harvard psychologist, makes a fascinating and cogent case for the decline of violence: “Today we may be living in the most peaceable era in our species’ existence.”  However, despite his distinguished psychological qualifications, in his 802 page book he does not mention the epidemic of suicide and the continued growth and power of cultural stigma which is a major factor in how our society views mental illness. Dr. Pinker does discuss, at great length, the influence of empathy in reduction of violence. “Empathy has surely been historically important in setting off epiphanies of concern for members of overlooked groups. But the epiphanies are not enough. For empathy to matter, it must goad changes in policies and norms that determine how people in those groups are treated. At these critical moments, a newfound sensitivity to the human costs of a practice may tip the decisions of elites and the conventional wisdom of the masses…the ultimate goal should be policies and norms that become second nature and render empathy unnecessary. Empathy, like love, is in fact not all you need.”   In fact we must vigorously attack the stigma of mental illness in all its manifestations: through awareness, education, legislation and through our moral and spiritual institutions.

The power of stigma is evident in all the demographic categories where mental illness and suicidal ideation occur. The process of stigma very often begins in childhood, but insinuates itself, often progressively, into the self-worth of all ages, races, economic classes, genders and religions.   Perhaps the most painful example of the malignant power of stigma is the experience of veterans of the Vietnam War.  As a veteran of that conflict the following data of that shameful era is particularly painful, but demonstrates the insidious power of stigma.

Over 2.5 million American military service personnel served in the Vietnam conflict. 1.5 million experienced in combat.  58,200 were killed in action; 300,000 were wounded which included 74,000 quadriplegics and those with multiple amputees. It was estimated in 2005 there were 1.5 million military personnel who sustained PTSD due to their experience in Vietnam. In 2005 it was estimated there were greater than 100,000 suicides in Vietnam veterans. There were at least 382 “in-country” suicides by active duty military in Vietnam. By 2014, Dr. Edward Tick, in his book, “Warrior’s Return- Restoring the Soul After War,” estimated three times as many veterans committed suicide as were killed during the conflict. 

Thus the rate of suicides is being replicated, if not exceeded, for veterans from conflicts since 9/11/2001.  Dr. Tick notes between 2005 and 2011, there have been 49,000 veteran suicides. By 2014 “more than 6,500 veterans kill themselves everyyear, which is a far higher tollthan the total number killed in the full length of the Iraq and Afghanistan wars combined…..Many veterans die in violent ways after violent service. Accidents (unconscious suicides) and criminal activity (death by cop) may have military or combat-generated components.  Iraq and Afghanistan veterans have a 75 percent higher rate of fatal motor vehicle accidents than nonveterans….Accidental deaths may mean that the terrible veteran suicide rate is even higher than we know.”

What is going on here? What is the stigma we place on our veterans?  Following Vietnam we shamed those who were already racked with guilt over the failure of their efforts and the loss of their brother warriors.  Thousands were accused of being fakers for exhibiting the burdens of PTSD. Tick describes this with the following words: “Veterans know that, having been to hell and back, they are different. We expect them to put war behind them and rejoin the ordinary flow of civilian life. But it is impossible for them to do so---and wrong for us to request it…When the survivor cannot leave war’s expectations, values, and losses behind, it becomes the eternal present.”

What profound burdens we place on our fellow strugglers by our insatiable and unreasonable expectations for perfection. And if they do not meet our mercurial and unpredictable cultural standards, we place a stain, brand, or stigma upon them, missing their real strengths; the values that should sustain us all through the inevitable stress of our lives.  It is our moral responsibility to lift the stigma and turn it into a strength.