Blessings in Disguise:
A New Paradigm for Thinking About
Children with Craniofacial Conditions
Presentation to the Parent Conference at ACPA, May 4, 2002
Published at Cleft Advocate with permission of the author.
Ronald P Strauss, DMD, PhD
Professor and Chair, Department of Dental Ecology, UNC School of Dentistry
Professor, Department of Social Medicine, UNC School of Medicine
University of North Carolina at Chapel Hill, School of Dentistry,
C.B. # 7450, Chapel Hill, NC 27599-7450
Phone: 919-966-2788; FAX: 919-966-6761; Ron_Strauss@unc.edu
This paper was published in-part in the Cleft Palate - Craniofacial Journal
(Strauss RP. Only Skin Deep: Health, Resilience and Craniofacial Care. Cleft Palate-Craniofacial Journal. 2001; 38(3): 226-230).
Introduction
Imagine a different view of the impact of cleft lip/palate and craniofacial conditions that locates "blessings in disguise," where disabilities and limitations were previously envisioned. Is it possible that there is wisdom in the song "Beauty's Only Skin Deep"; that we need to look again at how appearance and facial disfiguration impact the lives of affected persons with an awareness that most such persons live healthy, full and satisfying lives?
Could it be that a simple shift of vantage-point would allow us to see "being different," as being unique; to see coping with stigma as a healthy human adaptation? Could we open the possibility that sometimes seeing the world from the position of an outsider may afford a person wisdom and perspective not otherwise available?
This talk considers a shift in how researchers might view children with special needs and how clinicians might approach families. This proposed shift in theory and viewpoint would have us focus on health and resilience in persons with craniofacial conditions - as opposed to problems, disabilities or issues.
Theoretical Traditions
Theories are built upon the insights and scholarship of predecessors and in this case our proposed new theoretical perspective rests on "the shoulders of research giants." There is a rich, extensive and compelling literature on the psychological and social responses to cleft lip/palate and craniofacial conditions.
This literature points out the numerous personal challenges and difficulties faced by affected persons. Researchers have noted that the magnitude of the psychological impact of a condition may not be related to the level of its biological effect.
Studies of self-concept, psychoeducational development, social perception by peers, parents and teachers and the public have highlighted the psychosocial risks for school-age children with cleft lip and palate. Studies of adolescents with cleft lip and palate indicate that appearance and speech may remain problematic.
Studies have shown that there is an association between cleft lip and palate and the increased reporting of conduct problems at home and behavioral and learning problems at school.
Children with cleft lip and palate have not been shown to suffer from low self-concept or psychological disorders, however they do demonstrate some patterns of increased social inhibition and self-consciousness about appearance.
Adolescents with cleft lip and palate generally have positive self-concepts, however girls have been found to manifest higher rates of social adjustment problems, particularly related to appearance. The adjustment of adolescents has been shown to be associated with the degree of shyness, or social inhibition expressed.
In summary, children with cleft lip and palate have generally been noted to have normal self-concept, but they often experience psychological problems associated with adjustment. Psychologists have used these findings to support the identification of children at psychological risk and to formulate interventions on behalf of such children.
Only a fool would deny the consistency of the psychological findings about this population, however one quandary remains in the form of a question. Why is it that in spite of the numerous challenges and problems shown in the literature, so many persons with cleft lip/palate and craniofacial conditions become productive, contributing, happy, satisfied individuals?
Could it be that many affected individuals find the "blessings in disguise?"
Do they find growth and positive value in the experience of adapting to their condition?
Would they trade the experience of "being different," for the experience of conformity?
Does having people in a community, who are different, challenge dominant perspectives or prejudices?
Is society richer for the viewpoints of persons who can see its values from an alternative or outsider vantagepoint?
In starting to look for answers to these questions, I decided to look once more "over the shoulders of some research giants" and found some surprises.
Erving Goffman developed the dominant theory of social stigmatization in 1963. It has guided much of the social and behavioral research in the past 30 years. Goffman's work illuminates many painful aspects of the social life of persons with stigma or disfiguration, and he states that:
"The stigmatized individual tends to hold the same beliefs about identity that we do; this is a pivotal fact. His deepest feelings about what he is may be his sense of being a "normal person," a human being like anyone else, a person, therefore, who deserves a fair chance and a fair break."
Goffman also used an interesting quote from a woman who had polio who reflects that:
"But now, far away from the hospital experience, I can evaluate what I have learned. For it wasn't only suffering: it was also learning through suffering. I know my awareness of people has deepened and increased, that those who are close to me can count on me to turn all my mind and heart and attention to their problems. I could not have learned that dashing all over a tennis court."
Goffman also uses a quote from a person with multiple sclerosis who said:
"Both healthy minds and healthy bodies may be crippled. The fact that "normal" people can get around, can see, can hear, doesn't mean that they are seeing or hearing. They can be very blind to the things that spoil their happiness, very deaf to the pleas of others for kindness; when I think of them I do not feel any more crippled or disabled than they. Perhaps in some small way I can be the means of opening their eyes to the beauties around us: things like a warm handclasp, a voice that is anxious to cheer, a spring breeze, music to listen to, a friendly nod."
James Partridge (1990) reflected about his experience of having a facial disfiguration after a burn by saying that:
"I have never intentionally used my disfigurement as an excuse for being treated in a special way. Instead I have tried to cultivate the art of wearing my new face with pride. Above all, my face has opened new doors in my understanding of life and people. I refuse to see it as a handicap."
James Partridge also described the process of healing from his burns as "changing faces." He advised that:
"Demoralization and disfiguration often go hand in hand. A disfigured person who has lost confidence in himself and who has little or no support from other people will probably seek out fellow sufferers who are similarly alienated. Their stories of social disasters, feelings of rejection and lack of any strategy to improve their situation make it even harder to start getting to grips with facial disfiguration as a positive challenge . My facial injuries gave, if anything, an added dimension to my life, making my future even more intriguing than it had been before. Could I really do anything with a ruined face? It was a challenge to find out. And in finding out that the answer was definitely yes, my self-confidence returned - and as arrogantly as before."
As I looked into first-person accounts of the experience of having a facial disfiguration or a cleft lip/palate, I noted that frequently individuals write about the positive and growth enhancing aspects of treatment and of learning to live with their conditions.
Such quotes should not simplistically be interpreted to mean that most affected individuals would ask to be given a challenging and special path. Certainly, most would probably choose to take an easier and more customary path in their lives. However, some would not trade their lives for the lives of others, even if given the option. This has become very apparent in the controversies that have erupted around cochlear implants for persons with serious hearing impairments.
Some candidates for implants have jumped at the chance to become hearing persons, while others have chosen to remain part of the "deaf community." Some persons with deafness appreciate the special closeness and understanding of others who share their language, perspectives and experiences.
Hannah Jewell, a young adult patient of mine reflected recently that unique opportunities for self-awareness occurred for her, that might not have happened were she not affected by a cleft lip and palate. She wrote a poem which she asked me to share with you.
YOU CARRY A SOUL OF LIGHT
DELICATE REPONSIBILITY
WHEN YOU LEFT THE HEAVENS TO COME TO US
THE ANGELS WEPT AND FOLLOWED
HOPING YOU WOULD STAY
KNOWING YOU HAD PAIN AHEAD
THEY HELD YOUR SHOULDERS, BID YOU WELL
AND WALKED YOU TO THE EDGE
AND JUST BEFORE YOU CROSSED THE BRINK
THEY KISSED YOUR FACE SO HARD
IT SPLIT
THEY BURNED YOUR SOUL
AND LEFT THEIR MARK
FOR YOU TO SHOW TO US
THOUGH STILL YOU FEEL THAT HEAVY BLISS
WALK WITH PRIDE
AND SMILE UP
WHEN THEY SEE YOUR TRUTH
THEY WILL REMEMBER
AND THE SKIES WILL RAIN
WITH LUCK
I think what Hannah was saying is that challenges may bring opportunities for special gifts and thereby, blessings. If in each child, we look for the special gifts they bring to the world, we will allow them to enrich our lives and bring their special perspectives to the broader community.
If we treat such a child as a problem waiting to be solved as a difference waiting to be corrected, we will have missed a chance to grow ourselves and will have limited a child's chance to be fulfilled and confident in who he or she is right now not only who he or she will be once surgery or some other medical intervention has happened.
Well, how do we approach making changes?
Three Steps
For social and family perceptions of congenital facial conditions to change, three initial steps will need to occur.
The first step involves creating optimism and positivity around a child born with a congenital condition at the time of birth and diagnosis. Parents of affected newborns have been reported to manifest shock, depression, guilt and anxiety.
Research has examined how health professionals communicate to parents about congenital conditions and also has examined the parental responses to the informing process. The informing encounter is a critical moment that is etched into the memory of parents. How it is conducted and what content it conveys may determine the expectations that parents bring to raising their child.
Some have described physicians who "hang crepe" at the diagnostic encounter. This refers to physicians who inform the parent of all the possible problems, deficits and complications that might relate to the child's birth condition. While graphically conveying all the possible negative sequella allows the informing physician to meet a legal responsibility, it may affect how the child is seen by the family.
Parents who approach their newborn with a cleft lip/palate with optimism and pride, while recognizing the child's condition and treatment needs, will be more likely to develop positive expectations for the child. Physicians and craniofacial team members, who can initiate a positive, while accurate, discussion about a child's future, will contribute to the child's value to the family and ultimately, to the society.
Imagine you as a parent of an affected newborn not hard to do, I expect imagine having a team member cuddle and embrace your child, as her strengths, not her deficits, are the initial focus of the discussion. Such a positive encounter with a professional might start a new family in seeing a newborn daughter as a healthy, growing child, as a blessing, as opposed to a child burdened with defects and problems.
I wonder how many of you experienced such positivity at the birth of your child?
Was you child held and cuddled by your doctor?
Was your child called by his or her name?
Were you given the chance to let your emotions pour out or did you have to hold them in before the doctors?
What would have made the first moments, or weeks, better for you?
The second step is for doctors to start asking patients and parents new and different questions. Doctors could consider asking children about their strengths and their best qualities. Parents could be asked about their children's positive qualities, along with their challenges and issues.
A child or family could be asked about what they have learned from having a congenital condition?
Building a discussion that focuses on strengths and optimism, while not being superficial or dishonest, may help change the meaning a family gives to a child's condition.
Parents may also have entirely different questions and interests. Hope Charkins wrote about her early visits to the craniofacial center with her son who has Treacher Collins Syndrome and said:
"I soon began to think about questions the professionals were not addressing and that had no answers: Would he be happy? Would he have girlfriends, go on dates, and go to the prom? Would he find a spouse to love him? Would he have a family? Seven years later I still do not have the answers to these questions, but no other parent does either.
What I do know, however, is that there is no reason these events cannot be part of his life if he so chooses. I have met a variety of adults with facial differences who are happy, have loving spouses and families, and went to the prom! While the road was not always easy for them, they were successful in getting what they wanted in their lives. Provided you nurture your child's self-esteem and make sure she receives plenty of support from family and friends, there is no reason to believe that she, too, cannot succeed."
Clinicians might also consider how treatment decisions could further involve the child and family so that they feel stronger and more responsible for their own destiny. Could the child and family be given more treatment choices?
Would providing access to social opportunities and social skills building help the child to see himself in positive terms?
Advances in medicine and surgery mean that persons with craniofacial conditions are offered extensive treatment to improve their situations. The desire to provide treatment and remediation, also known as medical or treatment activism, is characteristic of how U.S. society responds to children with facial deformities.
Humanists have sometimes criticized society's high value on attractiveness and the degree to which appearance influences opportunity. Others have argued that persons with disfigurations must normalize their appearance because societal and cultural values and stereotypes are hard to change.
Health educational interventions in school settings seek to change peer attitudes about appearance, but pervasive advertising and mass media images reinforce the desirability of physical attractiveness.
Could the social value on physical attractiveness change in a society?
Could the same mass media that sells cars with sexy models and beautiful faces, be used to help us appreciate difference?
Could we really turn social values on their head and go beyond tolerance . To appreciation.
How do we as a society get there? Not an easy process!
However, could surgeons evaluate when the process of multiple surgical procedures stops being beneficial?
Could they determine when the patient's decision to accept a residual deformity is a wise and emotionally healthy choice?
The third step is for us to launch a new craniofacial social science model for research built around understanding resilience and the development of healthy people.
The historical focus on deficits and challenges has brought professionals a clearer understanding of the biological and psychosocial challenges faced by children with cleft lip/palate and craniofacial conditions.
The science of resilience, strengths and optimism will move us to understanding how to maximize human potential. It will mean changing the focus of study from disease and impairments to health, resilience and success. This provides a theoretical basis for a theory of craniofacial health.
Two interesting research models are emerging from psychology and sociology to help in this movement. The work of Martin E.P. Seligman, a psychologist, examines optimism and resiliency in the face of social and economic challenges. His books "Learned Optimism" (1990) and the "Optimistic Child"(1995) espouse a theory of personal control and begin the elucidation of factors that enhance personal success.
In sociology, Aaron Antonovsky (1987) has proposed a "Salutogenic Perspective" which focuses on the origins of health, as opposed to the origins of disease. It asks the question "why are people healthy? And what makes them become healthier?" Using this perspective, social scientists can ask new questions that probe the sociocultural sources of resilience. They may ask about how family life, culture, myth, education, courage, faith, and humor arm children to succeed?
They may probe about what qualities differentiate gifted students with cleft lip/palate from those who struggle in school?
They can start to sort qualities that account for marital and personal success? Psychological measures and scales that can be used in the clinical environment will be useful in conducting future studies of positive psychological and social adaptation.
The concept of individual resiliency has been widely discussed and is broadening in the literature, as more attention is being directed at family resilience (Hawley and DeHaan, 1996). Walsh (1996) identified four key factors in family resiliency during a loss as:
"(1) shared acknowledgment of the reality of the loss;
(2) open communication for sharing the experience;
(3) reorganization of the family system; and
(4) reinvestment in other relationships and life pursuits" .
The theories of both individual and family resiliency provide important perspectives when studying the lives of persons with congenital conditions such as cleft lip and palate. Some have pondered whether psychological resilience is a personality trait or whether it is a response to the social experience of an individual or family; whether it is an inherent orientation or whether it can be taught or encouraged. The literature is not conclusive on these questions and there is considerable room for social science investigation in these issues, especially in a defined population such as those with cleft lip and palate.
While there were studies of adults with cleft lip and palate done in the 1970's , there is a paucity of recent studies that demonstrate social, marital and occupational outcomes in adults with cleft lip/palate and craniofacial conditions.
In summary, the three steps proposed to change how craniofacial conditions are envisioned are:
The first step involves creating optimism and positivity around the time of birth and diagnosis.
The second step is for clinicians to start asking children and parents new and different questions.
The third step is to launch a new craniofacial social science model for research built around understanding resilience and the development of healthy people.
The implications of this proposed model are substantial. If the above three steps are effective, societal and family understandings of disability will change.
Instead of fully merging into the mix of normalized identity, persons with congenital conditions will be seen as having a unique identity with something special to add to society. They would be recognized for the value of their perspective and understood to have strengths, not deficits, to contribute to the culture and community at large. This fundamentally will change how persons with congenital conditions have been seen.
No longer would persons with craniofacial disfigurations be expected to fix or hide their specialness, rather they would be encouraged to share their unique perspective and contribution to society. Thus, we would find craniofacial advocacy groups celebrating their special identity and announcing their pride in being "Differently Abled." The vocabulary for appreciating difference now exists but doesn't fit well with the biomedical model that focuses on remediating disabilities.
If there is virtue found in being different, then many other questions arise. For example, if being different is a good thing, then is there reason to seek to so aggressively prevent birth defects?
Is natural human variation a positive characteristic up to a limit? What is that limit?
Does defining the human genome include defining some characteristics as normative, and others as deviant? At what point does variation become deviation?
Do we all become aware of our being different when the genome is mapped? Are there dangers that a mapped genome will increase pressures for biological conformity?
Will Neonazis of the 21st Century have new tools for eugenic manipulation?
While these many speculative questions will arise, some more immediate practical questions may be considered.
Should there be a serious effort to detect children with non-life-threatening conditions, such as cleft lip and other craniofacial anomalies, in-utero with ultrasound?
Does an ultrasound diagnosis, open the family to pressures to abort the affected fetus ? Should physicians advise expectant parents that their baby with a cleft lip and palate will be likely to grow into a positive member of the family and society? When health professionals portray children with congenital conditions in positive, contributing terms, then the family and community will become more accepting and optimistic.
The changes proposed will guide future developments in treatment, suggest new directions in research, and bring us closer to realizing that congenital conditions can sometimes truly be "blessings in disguise."
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