Facing Invisible Dragons

Disability and Family Identity

The tension of the future is unbearable in us. It must break through narrow cracks, it must force new ways. You want to cast off the burden, you want to escape the inescapable. Running away is deception and detour. Shut your eyes so that you do not see the manifest, the outwardly plural, the tearing away and the tempting. There is only one way; there is only one salvation and that is your salvation. (C. G. Jung)

The following narrative of the brother of a sibling with brain injury in the United States serves as an example of a conspiracy of silence, of survivor guilt, and the beginnings of dissociation and escape that led to substance abuse. Now a 50-year-old man facing directly and finding meaning in the process and choice of recovery, Kevin is coming to terms with his own suffering through writing, therapeutic endeavors, and through attending 12-step programs and facilitating such for others. One could say that he is choosing to engage in a Zhi Mian life. Kevin reflects on the day when he was 7 years old and his 8-year-old brother, John, who had become more violent and unmanageable (i.e., choking, biting, scratching, throwing, and pushing his younger siblings), was removed from the home without explanation, and taken to live in an institution a week after Kevin and his younger sister, Nancy, were scolded by their father for hiding in fear from John.

I don’t think any of us, at least not the younger ones, were told what was going on. One day my mother and a neighbor lady friend of hers loaded John into the car and drove away. We stayed at home. I forget who was watching us. Probably Joey, as I called him. I’ll never lose the vividly clear picture of what happened next. The car my Mom and John had left in pulled up and stopped. No one got out for the longest time. Why weren’t they getting out? They just sat in the car as I waited and wondered. Then the door opened and my mother slowly stood up out of the car. Hunched over and crying the worst cry a person can conceive of. Absolutely destroyed inside and wailing with tears pouring down like a waterfall she tried to move and just wept. The neighbor lady held her and helped her stand as she was obviously weak and fragile. I stood there watching and it destroyed me. What was wrong? I asked where’s John and she cried all the more. She couldn’t answer. She couldn’t answer because her tears and devastating moans would not allow her to speak. The neighbor lady said that they dropped John off at a special home where people could help him. My mother only cried louder. I remember the vision as clear as crystal. Oddly, I have a vision in my head of myself standing in the front courtyard watching my mother. I can see me—a clear picture of me bewildered and confused and lost. I was standing by the front door beside a large yucca palm type of plant. Could it be possibly that I could see myself? It’s very possible when I think back to the depth of feelings that day brought forth—that my spirit just plain lifted out of me. My spirit left me and encompassed the whole scene. My heart reached out to my mother and we were one. I had a view of my Mom, but somehow looked back on the small boy by the front door. The boy was me.

Kevin blamed himself for John’s removal from the home and felt a deep sense of guilt for having hidden behind his father when he saw John running at him. His father scolded him and his younger sister, Nancy, yelling “How dare you hide from your brother. You know that he doesn’t know any better.” Kevin felt that there was a direct relationship between what he had been scolded for and John being institutionalized. Hence, he blamed his mother’s and the family’s pain on his attempt to protect himself. It took a long time for him to forgive himself even though there was, in actuality, nothing to forgive.

Experiences of interpersonal trauma are not uncommon in such families, as are escape mechanisms that are used for the purposes of fleeing from unbearable suffering and traumatic memories. The American individual and family may build an identity around brokenness, while attempting in an inauthentic way to become a separate individual apart from the family system. It would follow that the same type of process of “broken-ness” occurs in China, yet because family identity is more profound, turning away from one’s family to establish a separate identity may be considered a great humanistic crime. As Dias, Chan, Ungvarsky, Oraker, and Cleare-Hoffman (2011) suggest, “For a Chinese person, to exist is to live your life with your family, which is sufficient for a meaningful life” (p. 271). However, from a contextual standpoint, according to some researchers, when a child has a disability, it may possibly be seen, in some families, as “a punishment for an ancestor’s misbehavior” or that “the disability is due to the current family’s disregard for their obligation to honor their ancestors” (Wang, Michaels, & Day, 2011, p. 784). Furthermore, it has been found that high degrees of pessimism, parent and family problems, and the particular characteristics of the disabled child have added to the stress in some Chinese families. This is not unlike American families. However, some individuals in China have communicated that shame, guilt, and the fear of being stigmatized for having a family member with a developmental disability may stop a family from seeking help, and if they do end up seeking help, there are few places to go for family therapy, at least until recently. Families may “hide,” in order to try to “save face,” resulting in more stress.

In Wang, Michaels, and Day’s (2011) research on families with children with autism and other developmental disorders, they report that some fathers in the People’s Republic of China have shown a tendency to turn to substances in order to cope, while mothers tend to acknowledge stress in the family and to feel overwhelmed. However, another study (Man, 2002) looked at women in Hong Kong in the context of caregivers’ stress and coping for people with brain injury and concluded that those who were flexible and who had an “awareness of their own powerless state and willingness to ask for help” showed more of a capacity to cope. It could be said, from a Zhi Mian perspective that they faced their situation directly in the face of their own vulnerability (Wang, 2011). In both China and America, families can find adaptive ways of coping that demonstrate the courage to resist the impulse to rely predominantly on escape and, alternately, to look toward a way to enable the capacity to be present in the manner of Zhi Mian. As Wang (2011) states so eloquently “transcendence is achieved upon the discovery of meaning” rather than “a state of imprisonment in which people no longer see possibilities in life, meaning in suffering, nor opportunities in crisis.” They open up to their “ability to choose” (p. 244). More qualitatively oriented studies in China will serve to enlighten psychologists to the meaning-making process of those with siblings with developmental disabilities so that assumptions are not made based on limited quantitative data.

Psychotherapy for Families

All real living is meeting. (Martin Buber)

The long-term realities of having a family member with brain injury and/or other developmental injury are bound to a grief process. Sometimes families don’t even realize the extent of this grief until many years later. However, families often do not know where to begin in terms of somehow ritualizing or being witness to their grief and loss. In a larger societal context, there is little acknowledgement of the grief, depression, survivor guilt, and anger that family members attempt to work through. Existential-humanistic psychotherapy, in a depth-oriented framework can provide the ritual necessary for facing this loss and grief directly. Clinicians who have been in similar families may provide a unique container for such grief as well, since, as caretakers who have courageously faced their suffering and found meaning, they may have become what Lu Xun would consider “spiritual warriors” in a sense. These clinicians’ own acceptance of the helplessness that was experienced in their family may deepen the empathic feelings for the family coming to therapy and open these family members’ seeking therapy to consider their unique strength and that they may be warriors as well. Likewise, these therapists may be able to offer insights to other therapists who work with such families. Finding ways to make an existentially-based therapy explicitly available in the current professional climate in the United States can be a difficult endeavor and perhaps this is so in China as well. Lu Xun’s call to find the “warrior spirit” or “compassionate voices” seems apropos in this regard (as cited in Wang, 2009, p. 160).

A review of mainstream peer-reviewed psychological journals offers the following information. According to Wang, Michaels, and Day (2011) Chinese families have typically found assistance only through “psychiatrists, neurologists, and general practitioners,” although that is beginning to change as family therapy, particularly the Satir model, is beginning to be introduced in China (p. 791). The American Psychological Association Office of International Affairs has also gathered psychologists together through their International Learning Partner Program for trips to China for the purposes of dialogue and sharing about the practice of psychotherapy and “learning about the psychology, mental health, and health care systems in the country” (see www.apa.org/pubs/newsletters/access/2013/02-26/cuba-china.aspx). Focus group research was conducted in Hong Kong with the parents of children with developmental disabilities in order to explore specific needs. That study concluded that in order for parents to better cope with their special needs children and to have adequate support, they needed to receive some kind of structured education (Wong et al., 2004). Hence, some of the same researchers conducted another study to explore what the outcome would be if education were to be provided. Family-focused education was attempted, although without much effect on stress (Wong, Lai, Martinson, & Wong, 2006). Using a similar focus group approach, a recent dissertation study explored family needs as well. Support programs that are centered on survival and related themes emerged as most important to develop (Hu, 2012). Other research has explored particular types of therapeutic treatments for children with developmental disability, such as multisensory therapy or education-oriented programs based on Western models (Chan, Fung, & Thompson, 2005; Fung & Wong, 2005). Hong Kong, and not mainland China, has been the center of the scant research that has been done with families, and there is a paucity of either qualitative or quantitative research that looks specifically at the experience of siblings. Though it is a positive thing that family therapy is now available in China, some rightly believe it would be best if the therapy emerged from China itself and not from a Western modality. Thus, the indigenous Zhi Mian framework as a foundation for psychotherapy is one that may be embraced more fully because, contrary to approaches embedded in Western scientific paradigms, it has to do with “reflecting our insight of and response to the psychological condition in which Chinese people experience suffering and trauma, emotional struggle and pursuit of values” (Wang, 2011, p. 242).

Kim, Yang, and Hwang (2006) speak of experiencing a “growing disenchantment” with individualistic Western psychological modalities being imposed on collectivist cultures and that there is a need for “the development of an indigenous psychology appropriate for the collectivist Chinese” (p. 26). Yet Cheung, van de Vijver, and Leong (2011) suggest that it may be of more value in exploring the development of personality and identity to “look for synergy and to overcome the limitations of methods that focus on either cultural specificity or universality (p. 597). They propose an integrative path in this ever-expanding global framework, where indigenous approaches are interwoven into the mosaic of the major psychological approaches. The question arises, then, how to do this, and how to do it genuinely.

With that said, it appears that the time has indeed come, then, as Schneider (2011) states, “to reset psychology on its rightful existential-humanistic base” because it is not a theoretical modality, per se, but an approach that is most concerned with the human condition regardless of the nuances of diversity, yet its stance is one of “awe,” profound curiosity and respect for the many ways of being and knowing. In addition, as Schneider so beautifully states, “This whole bodied psychology does not preclude other strands along its bandwidth, but it incorporates them as part of its awesome tableau” (Schneider, 2011, p. 437). Receiving the wisdom of the blend of Zhi Mian and Existential-Depth Psychology to address the existential concerns of the family, particularly families with a child with a brain injury, seems to be an endeavor that embraces this intention in a mindful way. Even the cognitive sciences are coming back again to asking questions of existence and embracing phenomenology (Ramey, 2007-2008). As we move to the next developmental paradigm, we must value a place of “ground” that crosses cultures. Adame and Leitner (2011) are in-line with this stance, speaking about a “transpersonal responsibility” that “may be defined as an ongoing commitment to respond to the needs of humanity and the world at large” (p. 55). Psychotherapists who honor and find an authentic place in this grounded way, perhaps through mindfulness and other insight-related practices, may offer a great gift to the families they work with in regard to building healthy and nuanced identities and more complex mental and emotional development. These can be families who understand suffering deeply, yet who are not attached to such; families who have expanded their adaptability and consciousness to incorporate the kaleidoscope of life’s manifestations and responses and to make mindful choices and “relationships built upon love and service” (Wang, 2011, p. 244).

Zhi Mian and Collective Meaning

Everything requires careful consideration if one is to understand it. (Lu Xun)

The stress and trauma of growing up with a sibling with developmental disability and the effect on the family clearly has an impact on the development of identity in both the individualistic climate of America and the collectivist climate of China. It does not have to define an existence, though, nor does it have to result in defense mechanisms of unhealthy escape, such as dissociation and addictions. Alternately, by Zhi Mian, or in other words, by courageously refusing to give in to the seduction of excessive escape and by facing life directly, one can find a deeper quality of meaning through this kind of familial suffering. There is often “posttraumatic growth” that beckons to a richly reflective life, a life that faces adversity directly, yet acknowledges that there is more behind the face of things. Buddhist frameworks might relate this to receiving the pain of the first arrow but not falling prey to the second self-inflicted arrow of ruminative suffering and pushing away from awareness (Brach, 2013). Many siblings have gained a deep respect for what their brain-injured family members have taught them about the fragility of life and the importance of love and connection. Seeing the world through the eyes of their family member has given them a new perspective on the meaning of life, the limitations of being human, and the responsibility that we have toward each other. In this sense, the essence of Zhi Mian is exemplified. There is opportunity for empathy and attunement to other ways of knowing as one engages in a reconsideration of what it is to be human. These types of reflections can be viewed as “spiritual inquiry” (Rothberg, 2000, p. 161).

As the individual with brain injury grows older, siblings may share the care of the loved one and become intimately reconnected through this endeavor. This may be the hidden gift offered by the “wounded” sibling who can be said to be a bodhisattva of sorts. In America, a country that has always defined authenticity by personal independence and individuation away from the family identity, a paradoxical experience may emerge where an individual and his family system find greater authenticity and an identity of service and love through the shared caring of the “wounded” sibling. In fact, this opportunity for shared caring may be sine qua non for greater opportunity for emotional and spiritual growth. This is reflective of the words of Adame and Leitner (2011), who astutely contemplate what the psychological profession would be like if our key question was “how can this person be in a better position to care for others?” (p. 18). In mutual regard and shared responsibility for the holding of the adult–child with developmental disability, individuals within a family system can grow in unique ways that may involve the kind of moral development that Gilligan has written about when she asserts that care is the key ingredient (Gilligan, 1993). A quote from Martens (2007) adds to this common line of thinking in existentialism, with the remark that “self-evaluation and self-esteem is etiologically linked with the experience of contingent regard by significant others” (p. 81).

In response to reading passages that Kevin and his sister e-mailed their siblings about their childhood and their family’s weekly “visiting day” with John while he resided at Camarillo Children’s Treatment Center during the late 1960s and early 1970s, Tim, 43 years of age and the youngest of John’s five siblings e-mailed back the following statement:

Thank you for writing this. It’s really an incredible gift to our family that you and Kevin wrote so openly about it. I’ve been reading it in chunks all morning and sobbing. I was old enough to walk when John pushed Nancy off the pier. There was no car seat in the front at that time. I remember John at the fence. There was a day when I got to sit in the far back with Nancy. Dad checked him in and before we actually left John had gotten back to the fence. He wasn’t struggling or trying to climb it. He just clutched the fence with his right hand, kind of like an arrested wave and looked as we drove away. I remember thinking “Wait, that’s Johnny!”—and then remembering from his face that he wasn’t supposed to be in the car. Nancy was looking out the other side of the car, I think, and everyone was faced forward. I tried to say something so people could at least wave, but I couldn’t get the words out until it was too late and as I started to finally say it, I knew it didn’t matter anymore. I knew we loved him and he loved us, but there was nothing we could do but drive away. It’s one of my earliest memories. I’ll try to write something coherent about visiting day, but it might be a long time coming. What you wrote here has really helped me to realize, I think, why I’m so deeply resigned. I’ve assumed my whole life that the greatest heights of success would be bittersweet at best and most likely just another day. Even the thought of making other people happy or sad has this drag on it . . . this sense of, “What’s the difference?” I just carry around an enormous well of private pain that comes from seeing each member of our family in pain and being powerless to help. I remember so many occasions growing up when I thought, “This might be it. Things might get better . . . MAYBE I’VE BEEN WRONG ALL ALONG.” And then being right . . . As far as dissociation goes, pretty much my whole life is built around dreams that would lose their psychological function if they came true. Every time over the years when I actually did accomplish something, I wanted to cry. That little personal detail makes a fair bit of sense today. Thanks. Love, Tim.

The implication of trauma and the emotional suffering in this passage is palpable, and the sharing of these words among siblings has helped Tim, Kevin, and their adult siblings attempt to face their struggles honestly and directly (Zhi Mian) instead of turning away from them. These siblings, their spouses, and offspring have become closer in their shared responsibility of John. Working with their feelings around their family dynamics and exploring their experiences as the siblings of a brother with brain injury/developmental disability have helped to ground them in the world. One of the authors (Rohde-Brown) acknowledges this, as John is her brother as well. Facing life directly or Zhi Mian, was not part of her family legacy. Avoidance was the common parental response to difficult emotions and to engaging in transformative dialogue. Escaping through the arts was meaningful, yet genuine interaction between parents and children was not always forthcoming. Thus, art served as a gift of solace in both a surrogate way as well as an end in and of itself. The arts were healing in that various creative endeavors threw the siblings into a perceptual field where they could move away from the literal and the ruminative and into the realm of the senses and the numinous. Playful ways of being in contact brought them closer together. In a park, as children, when they pushed John on the merry-go-round, he would laugh with such abandon that the other siblings could not help but to give way to the same joy. John’s uninhibited behavior allowed permission to be like him at times, to move freely in the open space in wonderful, wild sprees. The “escape” that came with these occasions of play as well as through the arts seemed necessary and beneficial, as a certain amount of lively escape serves to facilitate a healthy equilibrium. It is only when escape is relied upon too heavily and in destructive forms that it becomes the antithesis of a Zhi Mian life. As Wang (2011) so astutely observed “the desire to escape is rational and understandable. But if we overly rely upon this mechanism, if we overly defend, then we reject and escape from the truth of life and even life itself” (p. 242). This balance is often difficult to sustain. Poetry, painting, writing songs and singing, acting in theatrical productions, writing stories, coming up with neologisms for humorous moments—these were all life-savers. It is often through art and through the senses, away from the purely cerebral, that we “make sense” of our worlds. Paradoxically, creative endeavors open us to the “sacred” (Corbett, 2007, p. 26)

In terms of the practicalities of life, the siblings had to learn things along the way, through mentors and therapy, after their parents passed away relatively early in life and the siblings took on the care of John collectively. It has been an experience of doing their best to directly face their circumstances, their responsibility for caring for their vulnerable sibling, which has brought them closer together. They have explicitly spoken about this with each other and the acknowledgement has had a particularly beneficent effect on their interactions and enhanced mutual respect for one another.

For these family members, and many others like them, through a continued focus of having an intention around authentic dialogue and being committed to the difficult task of “daring to refuse and withstand those forces and powers that obstruct and damage one’s growth to become oneself” (Wang, 2011, p. 244), a reconstruction of meaning is possible in their lives as adult siblings, as well as an honoring of that which is truly valued in life. It is not a linear path, such that as Martens (2007) states, “Even authentic individuals must ‘fight’ everyday to stay authentic” (p. 77). It is a worthy journey, though, and one that may be fostered in family-oriented psychotherapy that is grounded in an existential-humanistic-depth perspective. Families in China may resonate with this stance. Indeed, in reflecting on Asian ethics, it is said that “the Chinese perceive life to be more interconnected, with patterns of relationship creating order, rather than cause and effect” (Sommers-Flanagan & Sommers-Flanagan, 2007, p. 43) and with more of a “flowing circularity and deep interconnectedness that allows a longer and wider view of life than we tend to have in Western traditions” (p. 44).

To truly embody a Zhi Mian life, Wang (2011) suggests setting an intention to be fully and compassionately present to oneself in the trajectory of life and to offer the same stance of “love and service” toward others. As psychotherapists, we have the honor and responsibility to resist our own impulses to escape ourselves and to model authenticity in the therapeutic relationship. In addition, when we, as American or Chinese therapists, work with the families where there is a member with a brain injury, along with building relationship, moving away from the purely verbal is called for. The arts and somatic exploration are helpful ways to foster authenticity, and Hoffman and Clear-Hoffman (2011) acknowledge that the expressive arts, in particular, are perceived in China as “healing, both at cultural and individual levels” (p. 264). However, the greatest healing is in relationship/relatedness, which is the ground of existential psychology. I–Thou interaction and exploring where anxiety arises and subsides in the essence of the breath are keys to greater self-discovery and knowledge of the human condition. We may ask open-ended questions that keep our clients in the present moment with us and with their family members, such as “How is that for you?,” “Where are you experiencing that in your body?,”

How is it right now, here in the room, for you to tell me (and/or your family members) that intimate piece about your experience? Can you stay with that, here, right in this moment, for a bit, breathe with it and lean into the experience, noticing what happens, noticing where you may feel more anxiety or more flow and connection with each of us and noticing, ever so slightly, when and how this may shift?

Family members may then be asked similar questions and so forth.

Both authors have shared among themselves the numinous and directly present quality of connection they have felt in certain stunning moments with their brain-injured siblings through the years. These have been times when suddenly, they were struck as if time stood still, locked into a gaze with their sibling that moved them to their core; a quiet moment of still presence that seemed to convey the vastness of a depth of consciousness that goes beyond words and that we all share as well as an intimacy so profound that it defies everyday understanding, something of a “subtle” and “causal” rather than “gross” nature (Goswami, 2001). This kind of experience speaks to what Merleau-Ponty may have been referring to in regard to intersubjectivity when he wrote about “a relation of simultaneity between the visible and the invisible” (as cited in Fielding, 1999, p. 191). One of the authors (Rohde-Brown) reflects on the day in the park years ago when she assisted John with putting his shoes back on. Holding his soft foot in her hand and wiping the sand from between his toes, she looked up and met John’s gaze. He was looking directly into her eyes with an intimate and loving presence. This is just one of many examples when awe was present in a passing moment of sibling relationship. As Hoffman (2008) has stated, “suffering is one of the world’s greatest teachers, but also one of the more neglected” (p. 26). Rohde-Brown has often stated that John is her greatest teacher in life. Metaphorically speaking, he has opened her to an invitation to listen to the dragon that guards the pearl. Other siblings have expressed similar sentiments. For example, in speaking about his sister with Down Syndrome, the geneticist Skotko (2009) states “Kristin will continue to be a life coach, defining me, calibrating me, inspiring me” (p. 18). A colleague from Taiwan has also shared the following words:

As I reflect on the relationship I have with my younger brother, I readily come to the realization that the deeply rooted bond that I shared with him would not have otherwise been present if he were just another ordinary sibling without mental/developmental disabilities” and the bond involved “mutuality, support, reciprocity, and equality (R. Hwang, personal communication, March 18, 2013).

Case Example

Rohde-Brown has shared a couple of her own siblings’ responses to their brain-injured brother, John, with their permission. The coauthor, (Frain), who also has a sister who was brain injured as an infant, will contribute a brief case example from her work as a psychotherapist: David was 10 when he entered the University of Colorado Medical Center pediatric unit. His 15-year-old sister and 18-year-old brother came with his parents to admit him to the hospital. He was suffering from pain associated with a malfunctioning shunt that had been placed in his head to relieve the pressure of an abnormal amount of cerebral spinal fluid that had accumulated.

David, his siblings and parents are an example of a family that was able to face the tragic circumstances of the traumas associated with brain damage. Their journey through pain, confusion, and fury eventually brought each of them to a deeper meaning of life.

David was adopted at 2 years of age. His brother and sister were included in the decision to add him to the family. His parents felt they had been blessed with an exceptional life and wanted to help out in some way. They knew there were some children who were not adoptable because of handicaps or developmental delays and decided to seek out a child in need. David was behind in his development after being cared for in a foster home for 2 years, but readily caught up with normal milestones after 6 months with his new family. Unfortunately, a shunt that had been placed in his head to prevent brain damage or blindness from hydrocephalus began to malfunction shortly after his third birthday. This led to 10 different hospitalizations, 10 surgeries, and countless days of pain and suffering for David. Because of added pressure on the brain, he lost his eyesight and he was declared legally blind.

At times, his siblings resented David and began to have second thoughts about their decision to adopt him. Their life became filled with the strain of watching their brother scream in pain and suffering, the worry that he might die, and the stress of treks to the sterile, boring hospital to visit him during recovery. They were upset and jealous that their parents were preoccupied with him and they felt abandoned to the care of family and neighbors. They hated to see their brother confined to bed-rest and missed him terribly when he was not home. His brother, Aaron, was uncomfortable visiting the pediatric unit because of the severely handicapped children that were on the ward with David. Seeing them and his brother in a deformed state and acting out in anger and frustration caused him to have severe nightmares. He could not bring himself to visit his brother in the hospital for several weeks.

David’s parents were well educated. Father was a physicist and mother had recently entered the workforce after staying home for 15 years to raise the children. They had been married for 23 years and had a solid, loving relationship with each other and their children. However, the emotional wear and tear of caring for their incapacitated son drained them of time and money and, at times, overwhelmed their usual optimistic outlook on life.

David’s mother became very good at accepting David’s anger and frustration and his father showed up as a strong advocate for good care for his son. But they both had difficulty handling the stigma and strains of encounters in the outside world. They cringed from the pity they received, the curiosity of strangers, the whispers of “I’m so sorry,” and the lack of contact from previously close neighbors. Both parents became exhausted from attempting to appear cheerful and calm as they gave repeated explanations for their son’s odd looks and behavior.

David’s parents were deeply spiritual people who sought out advice at the Shambhala Meditation Center of Boulder Colorado for support. The guidance they received there helped them to see the trials of their son’s condition as opportunities for growth, maturity, and coping for themselves and their children. They were able to grieve the loss of the “normal” boy they had hoped for. They recognized David’s strengths as well as their own and built upon them. All members of the family were encouraged to use their excellent sense of humor and to accept assistance as they learned coping skills of relaxation, visualization, preparing for difficult events, and reaching out for honest and accurate explanations and information. They learned that David did best when he took part in his own medical care and he felt most secure with family members nearby.

In family therapy sessions, his sister, Sally and brother, Aaron, were able to write down some of the things they learned from their family situation. His sister reported that even though her brother was different and could not do things that her friends’ little brothers could do, David had a strong will to learn what he could and she enjoyed teaching him to do things like ski and swim. Sally and David both enjoyed making a public service announcement for Braille books. Even though he could be an annoying pest and sometimes messed up her things, Sally took pride in his accomplishments and the help she was able to give him.

David’s brother, after having been given permission to stay home on visiting day, learned to be more empathic with those who were less fortunate than he and began helping out with patients on the adolescent unit when the family came for afternoon visits. David’s parents saw that he “possesses faith, wisdom and a maturity about life and death that adults often fail to achieve.” They also felt, “He has special qualities of perception and understanding that are almost mystical.” Father felt that David taught him more about the important things in life than he had shown his son.

Through the support of professionals at the medical center, family, friends, and spiritual leaders, they were able to see their family as able to take David’s tragic situation and turn it into triumphs for each person in the family. They found resources that provided them with education, opportunities to explore their strong feelings of anger, revulsion, deprivation, and sacrifice, and connected them with groups where they formed new friendships. Family therapy with David, his parents and siblings, encouraged them to be open about their thoughts and feelings, including their suffering and worries for David and themselves after many of their dreams had been shattered or put on hold.

When Aaron was encouraged to speak his mind, he was able to talk about the nightmares he was having about the pediatric unit. He expressed through words and art that he felt as if he was being contaminated by visiting his brother at the hospital. He feared visiting again because the bad dreams interfered with his sleep and his ability to concentrate on schoolwork during his senior year of high school. His father was able to respond in agreement saying that he understood how sometimes visiting day added to their trauma. He reported that some days he caught the helpless feelings of other parents who waited with him in the waiting room. Dad felt the fear and anxiety of wondering if their child’s surgery would be successful was contagious.

Mother understood how distressing visits were for her son, and encouraged him to take a break for a few weeks during finals. She also explained that love is easy when everything is going well, but deep, committed family love included deciding to reach out to family when they were not functioning at their best or when they seemed unlovable. Sally was able to say that she loved her family but she wished to return to the way things were before. She wanted her life back and for it to be normal again. The family therapist acknowledged her pain and frustration and let Sally know that it is a normal and common wish after disaster strikes. She also reminded Sally that she had already shown creativity in adaptation and was making the best of their drastically changed life. The family therapist’s focus was to support the family as they journeyed to grow and find meaning by working through their grief and anxiety. David’s family was able to face their sense of helplessness and hopelessness, desire to deny and defend and support each other as they navigated the complicated medical, educational, and social world that David needed.

The authors regret that they do not have available to them a specific case example from China at this time. There is a growing organization called the Sibling Support Project that will likely expand into international venues soon, if it has not done so by the time of this publication. In addition, Easter Seals has conducted interviews with over 500 adult siblings (D. Meyer, 2009). Perhaps these types of endeavors will enlighten us to the nuances of sibling experiences in multicultural contexts, both in the United States and in other countries, such as China.

Conclusion

There are currently over three hundred therapeutic models, but building a practice with the foundations of Zhi Mian, or the intention to foster in ourselves and our clients the capacity to “reflect on existence” (Wang, 2011, p. 241), crosses cultural boundaries because it is based on core existential questions and the capacity for choice. If we expand our dialogue around cultural competency by including such constructs as Zhi Mian in our lexicon, then we are “maintaining openness to varied and unique experiences of clients” and we “open new levels of understanding” (Hoffman & Clear-Hoffman, 2011, p. 265).

The world report on disability has discovered that there are more than one billion disabled people worldwide. This number is growing as medical progress increases the survival rate of injured and congenitally disabled persons. This global issue requires countries around the world to advocate for a quality life for those with disabilities and to break down the attitudinal and physical barriers that millions face as they attempt to access resources and opportunities for a healthy and happy life. The openness and vulnerability that was apparent in our interactions with our Chinese colleagues and students while in Shanghai was deeply moving for both authors. A number of individuals had family members with either brain-related or other developmental disabilities and they shared freely from their hearts about their own experiences and about how, even with their struggles and sacrifices, they so valued these members of the family. We were both struck by the level of authenticity and emotional presence that was displayed, especially in the youngest individuals in the room, as they related their particular stories. The day after our presentation, one young man brought a framed photograph of himself as a child sitting with his late grandmother to show us. As we sat eating lunch in the Fudan University cafeteria with him, he tearfully told us that he missed her dearly, for she was “really the one who raised” him, as his mother was the caregiver for her severely disabled sibling and “didn’t have much time” for him. Stories such as these touched us deeply.

As we value our work with respect for uniqueness of each person and each family and we embed it in a contextual and existentially grounded way, our work is infused with spiritual purpose and depth. Therapeutic models that blend Eastern and Western perspectives enlighten us to the nuances of the existential experience in general (Craig, 2007; Schneider, 2011; Yang & Hoffman, 2011), and particularly when growing up with a sibling who resides on the outskirts of “normal” appearance and behavior. A truly multiculturally competent psychotherapy holds that we are all unique beings, yet our encounters with those people we grow up with and with whom we meet along the way, color our identity by their own idiosyncratic ways. Consistent with the “and” versus “either-or” perspective of Kierkegaard, we can learn from the practice of Zhi Mian that honoring the family and being authentic do not have to be distinct constructs in the context of values, meaning, and the development of a healthy identity. Adame and Leitner (2011) state that, “As therapists, we must also venture into this uncertain realm of the interhuman and have faith both in the process of healing through meeting and in the hidden potentials of every life” (p. 57). We can embrace the notion and practice of Zhi Mian to “face directly” that which we are. Wang (2011) offers us the wisdom that if one chooses “a Zhi Mian life,” then, in finding meaning in our suffering and moment to moment experience, “we discover that, instead of the end of the world, Zhi Mian shows us that it is but the falling of a mango from the tree” (p. 242). To understand and practice this compassionate stance toward oneself and others is a sacred art.

And this eternity must do, because having a self, being a self, is the greatest, the infinite, concession that has been made to man, but also eternity’s claim on him. (Kierkegaard, 1849/1989, p. 51)