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|Broken Vessels – Living in Two Worlds: Some Aspects of Working with Clients with a Physical Disability|
|Congresses - 2004 Barcelona|
|Written by Multiple|
The format of presentation is that we will ask each other three questions. In the first paper, Kathrin Asper asks Elizabeth Martiny:
First Question: Why Did You Choose the Wording, “Broken Vessels”?
The phrase “broken vessels” is not meant to stand by itself – the complete title is
“Broken Vessels – Containers for Individuation”. The image of “broken vessels” reminded me of the passage from the Old Testament from Jeremiah, of the potter who breaks the vessel and then remolds it. It is a harsh image, when one thinks of vessel as a human body, container for the psyche. The vessel is broken because of a congenital condition, a debilitating disease, an accident, or even the aging process.
I would like to use a few illustrations from my personal experience and from a client who has given consent. Most of the experiences can be generalized, but others with a physical disability may have another perspective.
In my case “broken vessel” meant having had polio at the age of four. The virus struck me in the last world-wide epidemic of 1952 about eighteen months before the vaccination was accessible. It was an experience of a destructive force invading my life, changing my body. The four-year-old body which I was just beginning to gain some control over and which gave me so much joy running through, exploring, touching, moving through the world, deserted, betrayed me. What my family and I were left with were the pieces, which we began to pick up.
The Remolding Process
The smashing of the vessel in my situation happened quickly. The remolding was another thing; it has been a long process, affecting the rest of my life.
Paradoxically with the process of acceptance of a permanent disability, the opposite face of the dark energy showed itself. In the hospital ward where I stayed for several months, the atmosphere was permeated by both grief of loss and hope for recovery. There emerged a tremendous life force of determination, and a will to recuperate. Patients, doctors, therapists worked together, for as full a recovery as possible. The healing process, the remolding of the vessel was evident; there was hope and joy as victories of paralyzed limbs coming back to life were celebrated. My understanding of the heroic efforts of the rehabilitation team and the body itself in the healing process, is the manifestation of the urge towards wholeness on all levels.
Rehabilitation initially means assessing and treating the physical problems. It is usually only after this dimension has stabilized that there is energy to go to other levels. I mention a few important areas.
1) Physical disability disrupts continuity of predicable development
If the crisis happened in childhood a whole segment of growth and development for the child never happens or happens in a distorted way, for example, development of speech for a deaf child requires major adaptations.
The family unit as it was known is broken. Parents’ attention focuses on the affected child and the medical treatments, hospital stays, financial burdens. The emotional turmoil can be exhausting. In addition, parents have to let go of and adjust their dreams and fantasies for this child for more realistic ones.
Parents may neglect the needs of other children. Often sibling rivalry is temporarily suspended out of shock, guilt and/or sympathy. Siblings can develop physical or psychological symptoms in competition for adult attention. Furthermore, it is not uncommon that siblings of a child with a handicap become caregivers. They develop empathy and a protective attitude towards others who are vulnerable. The danger is that they could sacrifice expressing their own needs and emotions and may find it difficult to separate from their role in order to live their own lives.
2) Physical disability constellates consciousness
What is also broken is the taking for granted of one’s body movement or interacting in the world in an unselfconscious way. Consciousness at this level means getting used to a different body. Heightened awareness is necessary in learning how to negotiate the environment. Negotiating the world with a physical disability usually means going slower, and frequently it means using some kind of apparatus or using learned ways of communicating. All of this requires concentrated mental focus. Sometimes so much energy is used for mundane activities it forces the individual to choose carefully how to use any leftover energy for more creative ventures including the search for meaning. Usually adaptations in negotiating the world eventually becomes second-hand, but, it always is a factor.
3) Body image is affected
During treatment sessions and medical examinations the wounded or disease-affected body becomes an object in the eyes of doctors and therapists. It is as if one’s own body no longer belongs to them. Furthermore, if the body is the source of embarrassment, or trouble, a person often rejects or dissociates from the body or certain body parts. This is the defense against pain, or shame of disfigurement or looking different from the “norm”.
4) Stigma of having a physical disability
One of the most difficult obstacles in meeting the public eye is dealing with projections. The world stares back, reflecting one’s oddness, and not necessarily in a gentle or accepting way. A person with a disability must cope with people’s response to outer physical appearance or an unusual style of movement or communication. It is not usually hate that is triggered from others but more likely pity, embarrassment, disgust, a condescending attitude, discomfort, curiosity, over-admiration, assumption that one needs help or is maladjusted or vulnerable, etc.
Encountering someone disfigured or disabled can constellate anxiety on the part of the viewer of one’s own physical vulnerability. (Fisher, pp. 63-4) If it can happen to another person, it can happen to them as well. Persons with a physical disability may have to deal with another’s insecurity projected onto them. If the person carries such projections and lives out the victim/inferiority role this has a far greater crippling effect than any physical limitation ever could have. The person as “victim” either could make themselves “invisible” or could make obnoxious demands on others to take responsibility and serve them. Either way a genuine relationship is not possible.
How one handles the projections depends on how well the person has accepted their disability as well as the self esteem and coping mechanisms already in place.
5) Spiritual questions arise
The image from Jeremiah suggests Yahweh’s anger. (Jer. 19:10) It insinuates that there was something wrong and punishment is due. Is it not a stereotype to suspect that if a person or family has been visited by disease or handicap or other misfortune then some wrongdoing must have transacted?
If a person with a disability is not to live a life of repentance and shame for the rest of their lives because of a “curse from the gods” then they must look elsewhere for meaning.
It can be an arduous struggle to eventually appreciate brokenness of body, or dismemberment, as a gift. One image which has special meaning for me is the image of Christ as Body in the Eucharist in the Catholic Mass, as one of wholeness. Before Communion the priest takes the Host or Body of Christ and holds it up. The priest deliberately breaks it into pieces – the breaking of the Body vessel.
I think that applied to physical disability it could symbolize the sacrificial relinquishing of being able to take for granted one’s body and its functioning. Furthermore it means giving up grandiose ideas of control over one’s body, and finally it means letting go of collective ideals of the Adonis/Venus physical appearance for self esteem in order to come to a realistic grounded acceptance of limitations, disfigurement or weakness.
I think it is also very significant that persons with disabilities are active and visible in the world first of all, for fulfillment of their destiny and not as objects of voyeurism but as conduits for the experience of transformation. For example, many caretakers for severely disabled, sick or elderly people are deeply touched and go through a transformation themselves, admitting they have needed this experience for their own growth. A physician told me that encountering brokenness in her patients puts her in touch with her own brokenness and is inspired with hope when seeing others who have found meaning in their woundedness. This enables her to interact on many levels with her patients.
It is ironic that one of my first analysands was a woman who had polio. It was very meaningful for her that I too had had polio; she felt I could understand. I wish to show you an example of spontaneous drawings by this woman whose father died when she was fourteen months old and then got polio a few months afterwards.
When she came into analysis she was in midlife. She had lived a productive, full life up to then. She married and had three children and was successful in her profession as a translator. However, her body strength began to deteriorate with what we now know as post-polio syndrome in which the original effects of polio return after many years of the body having compensated with other muscles. Her body could not support her life movements, it was the broken vessel. She was in the depths of burnout physically and was deeply depressed. Gradually she began to recover some energy and was able to take up drawing again as she had in her youth. The first two slides show her attempts. We can see coming from the unconscious compensating images of her fragmentation. Just as her body could no longer function as the container or mandala of her psyche the images served as a container, on a deeper level. Her task was to become conscious of her brokenness on a symbolical level. Her pictures allowed her to engage in this struggle for integration. In the first slide it is an image of Uroborus, which at that time she had not heard of consciously. In the second slide we see the tremendous suffering; the sacrificial dimension is not yet conscious.
Second Question: You carry a physical burden; how does it affect you today? Did it affect you in childhood and adolescence?
I don’t usually think about my mobility limitations and adjustments as a physical burden partly because the adjustments have become second-nature. My family and friends say that they don’t even see a disability. It is a compliment that they relate to me first as a person. With people who see and value me for who I am it is easy to ask for help when I really need it.
In addition, I hesitate to say I carry a physical burden because of the anticipation that others might identify “burden” with me. In my experience some people, in a sense, “impose” caregiving on physically disabled persons without knowing or asking if help is needed or wanted, as if the person cannot speak for themselves.
Projections can create an insecurity in a person with a disability who is sometimes left to wonder if they are being helped or are liked or receive attention because of who they are or because they are an object of another needing to do a good deed. Genuine empathy, sensitivity and open communication are more appropriate as in any relationship.
What about childhood?
I would like to focus on three points.
1) Ambivalent feelings towards body and care of the body
Clients with whom I have worked, who as children had been exposed to medical treatment, report many of the experiences as cold and impersonal. For some it was humiliating, evoking shame. The child having been confined to bed or even in one instance, tied down for treatment purposes would be terrified and feel abandoned. There can be an anger and frustration over of loss of control over the privacy and boundaries of one’s body and daily living activities.
In my case, fortunately, a close bond formed between myself and the physical therapist who became, “another mother”, which is often the case. However, having a maternal caregiver who is quite often the same person who inflicts pain in the treatment, arouses mixed feelings towards the person.
2) Being special
The position of being in the center for a person with a physical disability is often extended beyond what developmentally is appropriate. Under these circumstances the attention is focused on what’s wrong with the person and could lead to a compartmentalized self identity. In certain situations it brings discomfort and embarrassment to be the focus in the eyes of strangers because you are “an interesting case”.
In facilitating a person to have a sense of belonging and to explore their contribution to society it is natural to look for abilities. It enhances the well-being of the individual who might otherwise feel useless or be ostracized from their group. However, it opens up the controversial question of the worth of the child who is disabled. On the collective level, societies have sought meaning for this condition. The possibility of bringing a child who might be handicapped into the world can constellate anxiety. This, I think, in part, gives understanding to the popularity of pre-natal testing. Obviously it has great value on the practical level. But I do wonder if there is not an underlying fear in having a child who likely would be disabled. It opens up the question: Is disability a blessing or a curse?
Credo Mutwa in describing a belief from an African group expresses well what might be the underlying question in many cultures and groups. He relates:
Through this special gift the child can be recognized and find their place in society. But it also shows the great fear a society could have towards a person with a disability who might be thought to have nothing to contribute, or bring bad fortune. This question is wrought with complexity and needs further research.
3) Family dynamics
Within the family it is understandable that a physically vulnerable member might hold back expressing needs and feelings in order to avoid conflict and as not to appear ungrateful for the care given them. In speaking to an elderly man who stays with his daughter, he said he tries to not complain if he has aches or pains – he doesn’t want to be a burden. The relationship between the person with needs and the caregivers is complex and communication would be especially important.
My own experience was one of lack of communication about my physical disability within the family. After returning home from the six-month hospital stay there was great rejoicing but none of the other underlying emotions and experiences were ever talked about for the duration of my childhood. Communication only opened up many years later with my family when I invited them to share their perspective when I had polio. For the first time certain members of my family revealed their feelings. I had naively and “blissful” been unaware of the tremendous impact this had on them – the anger, resentments, sacrifices, and pain that they went through. My family, some for the sake of protecting me, others for the sake of trying to be good siblings and most likely for the sake of fears of their own emotions and not having a way to speak, never revealed their experience. However painful it was for us, at that time, to air feelings, it opened up deeper, more genuine relationships with my family.
Disability in Adolescence
In reflecting on this I highlight three dimensions which are expected transition issues but which are especially difficult for many young people with a physical disability: independence, self assertion, and sexuality.
Hospitalizations, surgeries, taking medications or physical therapy require that the young person be dependent, making it difficult to break parental ties. Rebelling against authority in the medical arena, could become life threatening situations, for example, refusing to take medications or adhering to a special diet. Identity with the group might also be thwarted if the young person has not established good relationships with peers.
2) Self assertion
The usual expression of self assertion might well be thwarted and hence delayed by the need to preserve at all costs the relationship with an adult authority, for example, to refrain from standing up for themselves for fear of alienating the caregiver. It may be that only at a much later stage of life a person is able to establish his or her self identity. It is crucial to see self-assertion for what it is and to encourage this urge to express the healthy self-advocacy [which may have been] thwarted at an earlier time. (Olkin, pp. 251-2)
To risk appearing ungrateful for the sake of exploring life and in order to discover one’s destiny takes courage and support from others. I think of a woman friend of mine several years ago who had been born with cerebral palsy. She had a university degree, held a good job as a research librarian and lived in her own flat. Sadly her physical condition deteriorated in her thirties. Against her own better judgment, she complied with mother’s choice to move her to a more sheltered environment, convenient for her mother to visit. My friend knew she could have explored other living arrangements, but acquiesced to her mother’s wishes because she could not hurt her mother’s feelings. She felt she had nowhere else to turn. She was in her early forties when she went to live in a home for the aged. In our discussions it was very painful for both of us. She was over-admiring of me, and I think, deep down envious of my independence.
The development of sexuality in the adolescent with a physical disability can be an especially difficult transition. It is impossible to give justice to what the problems could be when the physical sexual functioning varies according to the impairment. On the one extreme, certain conditions prohibit just about any sexual expression, for example, a person having a severe spastic condition with limited mobility. On the other end of the spectrum where there is no physical impairment to full sexual expression, a disfigurement or fear of lack of physical attractiveness may be quite debilitating. And there are many who are restricted “for their own protection”, justified by families and society by the mistaken belief that the affected persons do not have the capacity for “falling in and out of love”. Hence, there is an effort to keep the young person with a disability “sexless”. (Greengross, p. 11)
Furthermore, research has shown that physical disability plays a more detrimental role for women than for men in terms of finding a mate. (McPherson, p. 54) Other factors include women being more vulnerable in their ability to set boundaries physically for themselves and their lack of opportunities to gain experience in sexual relations.
Female attractiveness as defined by collective standards are still based on Venus-like physical features. However, there was one heartening experience last year when I visited the women’s department in a clothing store in New Jersey, in the States. For the first time I saw a female manikin in a wheelchair. She was dressed very fashionably. It was a powerful display showing that a woman wheelchair-bound is a feminine being. It appeals to the woman with a disability and challenges observers to imagine a woman with a disability as attractive and worthy of attention. Economically it recognizes that women with a disability are consumers and play a vital visible role in society. (Campling, pp. 24-7)
Another point on sexuality is the issue of sexual fetishes, however rare they may be. An example of this comes from an experience when I was involved in Colorado with the Rocky Mountain Handicapped Sports Club. This was an organization which enabled anyone with a physical disability, for example, the blind, amputees, and wheelchair bound, to participate in sports, like snow skiing, kayaking, water skiing, with modifications suited to their impairment. A girlfriend of mine with whom I used to ski was very attractive, and an excellent snow skier. She was a hip amputee from cancer. Her story was written up in a sports magazine, which drew responses from readers. One letter came from a man who expressed great admiration for her and wanted to meet her. However through their communication it eventually came out that his attraction was based on a fetish: he always had wanted to “make it” with an amputee woman. My friend and I were at first shocked, then angry, then we could laugh about it. But we were not so naïve after this.
This topic needs special attention. Young people need to be able to talk though their situation and their concerns in order to find ways to connect their experience of body with a positive sexual identity. This includes empowering them with knowledge of their sexual potential beginning with accurate factual information. Using imagery and storytelling can be especially beneficial as well as providing models of people with disabilities who have dealt with their sexuality in creative ways and are living full lives.
I think about a man who became quadriplegic in his early twenties. A few years ago he completed his Masters degree and now has his own business. He is married and his wife has just given birth to a healthy son. For him obstacles and setbacks became challenges. The brokenness hence became the vehicle for transformation. For him, living a full life means expressing intimacy and love in a married relationship.
Despite the obstacles we must not forget the inner spirit and resolution that young people with disability usually possess. Meeting the struggles and suffering often bring about a maturity beyond years.
I would like to return to the slides. The final slide shows the culmination of a stage in which the client could rest in the arms of the mother. She remarked that it was an image of our relationship and also of mothering herself.
Third Question: What helped you? Wwere there key experiences?
There were several factors which helped throughout my life towards an integration of my physical disability. I will highlight a few.
1) Attitude of the family
First of all my family did not think of me as being disabled, and therefore I did not think of myself as disabled. Medical personnel advised my parents to treat me as they would the other children. This was possible except for the necessary therapy and treatment. In those days there was no such thing as special education in the American school system except for the most severely impaired so I attended school with everyone else. I was not singled out although there were adjustments to be made occasionally.
Another helpful tool was writing. It was a fad when I was ten years old for girls to write in a diary. And I used mine faithfully. Rereading it recently showed that I poured out feelings and thoughts that I could not have expressed elsewhere. It too became a refuge and a way of connecting with myself.
3) Role modeling
Fortunately I had two girlfriends who also had polio whom I met in hospital. We continued a relationship and formed a special bond, which served as a support for each other. But primarily my role models were able-bodied persons. That had its advantages growing up as it reinforced my self concept as being normal.
However, that is not the whole truth about me. During adolescence and young adulthood the difference in physical appearance and functioning took on a more important role as I ventured out from the safe home environment. I was very fortunate to come in contact with the Rocky Mountain Handicapped Sports Club, which I have already mentioned. It was there for the first time as an adult that I saw disability mirrored back in so many different ways. I encountered men and women of all ages, and children from diverse backgrounds, all having some kind of disability. We came together not because there was something wrong with us but because we were people looking for ways to participate in life to the fullest. In this group we were the norm. It served people with amputated limbs, crutches, braces, those in wheel-chairs, those who were blind to reorient themselves (ourselves) to life and to expand our self-identity.
For me to be mirrored as having a disability awakened new acceptance of myself and bolstered my self confidence. It introduced new perspectives of looking at others who had a disability, for example, I saw a young man with a severe face disfigurement, the result of the Vietnam war, as the charismatic leader of a group, and a man with triple amputations, also a Vietnam war veteran, snow skiing. This, more than anything in my twenties, had a positive impact in growth towards integrating my disability on a deeper level. And it awakened new gratitude for life.
It was not long after having contact with this group that my psyche became very disturbed by the emotions I had pushed down; I was in deep depression. This brought me into therapy. The therapist asked if I ever had dreams and if so, to bring them. Within three weeks I had half a notebook full of dreams and thus began the inner voyage of discovering what my illness and disability could mean. The many spiritual questions hovering, also emerged … what kind of God is it that allows a man to endure wartime trauma, or a beautiful woman to die from cancer in the prime of life, or a child to suffer. And so began my process of individuation, constellated originally I believe, because of the invasion of the polio virus into my body and the breaking of the vessel.
This therapy continued over several years. Eventually I was introduced to Jung and went into analysis, which took the process deeper. To my surprise both analysts I worked with, spoke directly about my disability in the first session. Their comments acknowledged the practicalities and they did not immediately go into symbolic meanings. To have the struggle on the concrete, practical level acknowledged and thus valued was extremely important to me. Then we could let that go and in fact laugh about it. Humor helps to keep things in perspective. Knowing that my analysts were comfortable with the topic gave me the freedom to be open about whatever was important to discuss.
With this said, however, it was important to supplement individual analysis with other therapeutic approaches. Psychodrama opened up and facilitated integration of issues around family dynamics. Body therapy and sand play helped me to reconnect with my body, to reenter my physical vessel and to consciously value, enjoy, and trust my body again. Remolding the vessel is an on-going experience, opening new levels of consciousness and vistas within the process of individuation.
I would like to end with a poetic tribute of a mother, Prisca, for her son, Nkanyezi, who was multi-handicapped. It was tragic that her husband was unable to grow in consciousness, which would have enabled him to break away from identifying with the collective attitude. The father did not accept a son who could not perform according to collective standards. Nkanyezi’s mother, Prisca, cared for him on her own for his short ten years of life. She then dedicated her life to caring for other children who have multi-handicaps. She initiated the Nkanyezi Stimulation Centre which is in Orlando, Soweto, a township organized in the apartheid years, southwest of Joahnnesburg, where she and her staff care for thirty children.
I Stood for HimI stood for Nkanyezi right from birth
He was voiceless
I became his mouthpiece
Stood as an advocate
As the great man guided me
By backing me up
I stood up for his spiritual and special needs
He wouldn’t survive without support
The great man from above
Gave me support
I stood for him
While his body was motionless
His pulse failing
To soothe and pray for his soul
The great man was soothing both of us
I stood up, waiting for his departure
Made a vow to him before he left
To care for other children
As the great man told me to do so
I stood for his funeral
Strong and brave took every step
With a wounded spirit and shattered body
Whilst the great man carried me
I’m still standing and remain standing
For the rights of all children
Especially those with disabilities
The great man promised to be with me
For the rest of my life
– Thembekile Prisca Tshabalala
Living in Two Worlds
In the second paper, Elizabeth Martiny asks Kathrin Asper:
First Question: Why did you choose the title, “Living in two worlds”?
I chose the title, “living in two worlds”, because every person who carries any kind of a burden, and every person without a burden who participates to the life of a burdened person, lives in two worlds: the world of so-called normalcy and the world – inner and outer – where a burden manifests itself.1
Susan Sontag writes: “(…) we are each citizens of two kingdoms, the kingdom of the well and that of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”.2 This holds true also for persons with a disability.
For persons with a physical disability living in two worlds means that their life experience is marked by rehabilitation to normalcy, assimilation to the able-bodied. It signifies a reference to a norm and implies a medically and socially constructed identity.
This perspective has evolved since the time of the Enlightment and became a predominant social value beginning with the “birth of rehabilitation” associated with the maimed veterans of World War 1.3
Rehabilitation: “The art of preventing or correcting physical deformities in children” (1749)4
For a person with a disability, the perception of self remains a double image and creates a living in two worlds: One lives both as an impaired being and as a citizen, a worker and a social being like others.
On an emotional level, physical disability implies stigmatization5 and exposure to the so-called stare and discrimination, which leads to repetitive wounding and the constant challenges of how to live with all the feelings which arise from these emotional injuries. Does one negate these feelings? Swallow them? Share them with other persons with a disability? Share them with so-called non-disabled persons?
Since discrimination and stigmatization are a fact and are encountered in every new situation, over the years they become internalized and act psychodynamically as an inner stigmatizer and discriminator. It is too easy to advise dealing with this problem through an internal dialogue with the inner discriminator and stigmatizer.
Living in two worlds also means to live in a world that is not made for a person with a disability: for blind persons there is no special button to choose tickets for public transportation, short persons cannot reach the button in an elevator, persons in a wheelchair have to find out whether the movie-theatre or restaurant is accessible to wheelchairs. Deaf persons must find an assistant capable of interpreting by sign language when they attend a conference, persons with anus praeter (patch) must know in advance the location of the nearest toilet. The environment that is equipped for a person with a disability is reduced. Therefore a person with a disability also lives physically in two worlds. It is living between the reduced spaces equipped for persons with a disability (most often their home) and the outer reality mainly made for non-disabled persons.
Living in two worlds means also living partially in the world of hospitals, clinics, rehabilitation centers, where the individual is more often than not viewed as an object and not as a subject.6
Living in two worlds also means having to cope like typical persons in professional life and enduring at the same time pain, fatigue, and at times, depression.
Living in two worlds means further to be exposed to various models of disability. Rhoda Olkin in her book “What Psychotherapists Should Know About Disability” differentiates between three models.7 Each displays a different Weltanschauung of disability: Moral model, Medical model, Minority model.
The moral model – deeply rooted in one‘s Christian background – understands disability as a punishment by God. In a more secularized form this moral view is still well known and forms the model parents as well persons with a disability, and people in general may adhere to it. This model can even be traced in psychology where it gives rise to inconsiderate, guilt-inflicting, sometimes esoteric comments to clients, such as: You must have sinned in your former life, that is why you carry the disability; you can now reduce your Karma! Jungians, who tend to attribute mainly symbolic meaning to disability – which can under certain conditions make sense – may say: You limp because you lack the ability to take a standpoint/stance.
A child raised in the atmosphere of the moral model will have great difficulty outgrowing it and finding a new model. The latter could be called the “ethical model”.8 This model looks at the disability as a given task, which life has put on his or her path, as a “container for individuation” according to Elizabeth Martiny‘s conception and message. Outgrowing the moral model and moving to the ethical model makes the experiences of living in two worlds follow each other in time.
A person with a disability living according to a medical model interprets his or her situation strictly medically and may not display any understanding of the moral model, and shows little understanding of the ethical model. His or her belief and hope circle around medicine, the progress of medecine and the ultimate hope that one day medicine will find the cure. Often the extremely strong belief in medicine makes the person consult too many doctors and this may hinder the acceptance of the disability and the choice of the appropriate treatment until it is too late.9
The minority model is closely related to the social perspective on disability. This persepective – in a nutshell – is based on the conviction that disability is created by society itself.10 However, a person with a disability who adheres to the minority model tends to gain a strong sense of belonging and empowerment to strive socially and politically on behalf of the disability culture (e.g., deaf culture/sign language).
In light of the discussed models of disability, living in two worlds is also a phenomenon of believing in a model that differs from those embraced by other people with disabilities. Contrasting belief systems of course are stimulating and can give rise to reflection, insight and consciousness.
For a child with special needs, living in two worlds means the deep experience of being different from one‘s siblings, and it means noticing or assuming that parents are exhausted physically, emotionally and financially. Further, it creates another dichotomy between what what one shows to the world and what one does not want to reveal and cannot discuss (shame, guilt, anger, rage, fear, impotence, jalousy/envy, sadness). This situation serves as a basis for a specific discrepancy between persona and true personality due to disability and somatopsychic factors, as Arthur Frank rightly said: “Selves act in ways that choose their bodies, but bodies also create the selves who act. We can observe more of the first process as than of the second; how bodies create selves is scarcely understood at all.”11
Living in two worlds means, in short: being different.
Having looked at many people‘s situations related to living in two worlds, I can understand why you, Elizabeth, have entitled your presentation “Broken vessels –Containers for Individuation”. Several analysands of mine with physical disabilities have mentioned having dreams about containers that were cracked.
This deep sense of a “crack” becomes aggravated by the experience of living in two worlds, and signifies the tremendous challenge in the constant search for balance and in recreating – throughout one‘s life – an identity that incorporates both worlds. The image of the crack equally represents the basis for the onset of individuation at an early age.
Frida Kahlo, the Mexican painter, met this challenge on the canvas. She was affected by polio at a young age, and at age eighteen suffered a terrible accident that imposed on her a lifelong deteriorating disability. The canvas served as a container to hold two worlds – the world of suffering and the world of joy, beauty, and light.12
The holding and containing of the two worlds with their particular experiences can be seen and understood on a archetypal level as a reflection of the “conjunctio oppositorum”.13 Frida Kahlo finds expression for this conjunctio in her unique painting, “The Love Embrace of the Universe”.
Frida Kahlo: “The Love Embrace of the Universe” (1949)14
Second Question: Please discuss the special situation of parents of children with a physical disabilities
As a mother, sibling, and cousin of beloved ones who had disabilities, I participated in their lives in many ways. Over many years in my practice, I have seen more and more clients who have a visible or invisible disability or chronic illness, as well as clients who are parents, siblings, and relatives of people with disabilites. Witnessing the processes they have gone through has given me the priviledge of gaining insight into their kinship experience and relationships.
A mother of a child with special needs particularly learns not to show her fears, sadness or anxiety to the child and others, because the child needs to be encouraged, supported and protected. Such mothers also learn to live in two worlds. And as their child grows older, they may overlook new opportunities to address the child‘s inner experiences and to begin to express their own.
As child and parent protect each other, so does a parent protect parent and a sibling protect sibling. This creates blind areas in family interactions, as family members avoid topics that could cause hurt or discomfort – and as such are taboo and ideal fodder for projections and assumptions that are never or hardly ever discussed. Parents of a child with a disability begin to live monadically. They feel and hear what other people assume, think, and project out of ignorance, such as: “It must be a terrible blow/burden”, “They are certainly ashamed of the child”, “This child is certainly less loved than their others,” etc. Also, parents often encounter situations in which their child is discriminated against and stigmatized.
As a sister of a brother with polio I often heard that he is a “bit strange”; that the money spent for his numerous operations (in those days they had do be financed privately) was a waste, because he surely would die young. Others, adherents of Christian Science, remarked that operations were unnecessary, God would heal him. A cousin of mine had severe cerebral palsy. Often I met with him in situations where he was stared at and treated as an idiot, even though he was highly intelligent, had a university degree, and was living up to high professional standards.
A mother suffers when she experiences what her child must go through. The pain is greater than if she were enduring it herself. I believe this holds also true for the father. The archetypal container for such a a pain in the mother can be found in the symbol of Mary‘s heart pierced by one, or sometimes seven, swords.
This symbolic representation of maternal pain is based on Luke 2:27-35, where Simeon says to Mary: “Yea, a sword shall pierce through thy own soul [sometimes, “heart”] also, that the thoughts of many hearts may be revealed.“ (Luke 2:35) (The archetypal container for the pain and suffering of the person with a disability can be found in the symbol of the heart of Jesus with the crown of thorns.)
Devotional Image: “Heart of Mary”15
During pregnancy mother and father increasingly develop fantasies of and surrounding the child: The “imaginary child”16 is born before the actual child is! This process occurs among all parents, and during the first months of their infant‘s life they adjust the image of the imaginary child to reality – e.g., they adjust their fantasy of a peaceful, untroubled child to that of a crying, colicky baby.
In the case of a baby born with a congenital disability, the discrepancy between the imaginary and real child is greater, and the necessary adjustment to the infant‘s special needs is greater, especially since a baby with a disability has needs for which no parent can be prepared. This stressful situation demands care, patience, and flexibility. The mother feels a lack of security and competence. Inwardly, she experiences a break in the thread of life: her plans for her family‘s future, her vision of her life with the child, her creation of a new identity as mother and parent, all come to an end. She finds herself deprived of a vision for the future, bereaved of the comfort and trust such a vision can give. Once again, she has to adjust her identity.17 This traumatic break in the thread of life imprisons both mother and father in the present and excludes them from their past and future.
The onset of bonding between the baby and the mother, which is a process of mutual emotional and physical attunement, 18 often is endangered or impeded by such problems in the infant as feeding difficulties or vision or hearing impairment, and is interrupted by physical separations due to time in an intensive care unit, surgery, or other medical treatments. The bond formed under these circumstances may be an insecure one. A lifelong basic insecurity and a lack of basic trust19 are the consequences, and very often are compensated for by the development of special skills, resources, and talents. The most famous mythological exemple is Hephaistos, the Greek god of fire, a smith – and the only god who worked a job!
Insecure bonding in these cases creates a negative mother complex in the child. This is a very sad loss, not only for the child but also for the mother. People (and psychotherapists/analysts!) tend to attribute this to the mother‘s inability to love the baby. However, in all the cases I have witnessed and also from my own experience, this is not the case; on the contrary, the urge to mother, protect, and care for a child with a disability is more intense than usual, but is overshadowed by feelings of impotence. Later in the life of the infant, intensive physiotherapy, speech training, and other attempts to “make the body normal” – e.g., in cases of cerebral palsy, polio, or speech disorders due to cleft palate – add to the deep sense of being different and to the deficiency of basic trust. As the treatments are necessary more often than not, we nevertheless find here again a situation of living in two worlds: between the necessity to apply such treatments and the effects of those tretaments. There is no easy resolution to this paradox.
The mother becomes a co-therapist of the physicians and medical personnel. She has to give the infant/child special therapies several times a day for years. Doing so requires impeding the spontaneous impulses of the child, be they speech or movement, and continously trespassing on the child‘s physical boundaries. This gives the child the feeling of being an object rather than a subject. The well-known and admired stubbornness, obstinacy, fierce autonomy, and independece of persons with disabilities may be furthered by such early treatments.
A well-studied historic example is the German emperor Wilhelm II. He was born with a disability – crippled arm – and as a child who was future emperor and head of the German army, several times a day had to undergo various intensive treatments ranging from physiotherapy and electrical treatment to medieval daily treatment of bathing his disabled arm in the warm blood of a freshly-killed hare. He began this latter treatment at the age of six months!20
Modern neuroscience has demonstrated the effects on the brain of early childhood trauma, such as battered child syndrome and other child abuse. Early intensive and regular physiotherapy and speech training can be viewed as a cumulative trauma21 that leaves equal effects in the brain. These effects serve as a basis for specific emotions related to the experience of one‘s self, body, and life. I personally have not yet come across any publication or research that draws attention to this. However, from what has been published and researched in the field of early trauma in general, I would conclude that such above-mentioned intensive treatments leave their effects and traces in the brain.22
There are be many more aspects to be considered. In hindsight, and as a witness to other processes and experiences, I would say that parents run the danger of turning the child into a project of rehabilitation, of making him or her into a managed child. Even if they are conscious of this possibility and do much to compensate (e.g., by not intruding and by giving freedom, space, and time), parents cannot completely avoid this danger. Parents usually go to great lengths to help the child live in the world and prepare for having a life of his or her own. However, in time they and the child will encounter the drawbacks of all these endeavours. That cannot be avoided.
Third Question: What is your basic conviction as a psychotherapist when you work with clients who have a disability?
As already mentioned, a person with a disability under the pressure of modern society to be rehabilitated according to the norm, has been made into an object – an object of treatments and an object in the files of medical doctors, therapists, social workers and insurance plans.
However, more and more we are gaining a new perspective of disability thanks to cultural and social disability research, which is now widely acknowledged in the Anglo-American world. This new perspective also is beginning to gain ground in Europe. It accepts that a person with a disability is a subject in his or her own right and not in comparison with typical persons and so-called normalcy.
When I started to do research in this field ten years ago, I realized there is an abundance of literature on disability in the field of social pedagogy and education, but nearly nothing in the field of psychotherapy and depth psychology.23 At best, persons with disabilities are mentioned in the footnotes of psychotherapy manuals. In the fields of pedagogy and education, children with disabilities were and still are seen as objects that need to be adapted to the norm as much as possible.
Realizing this gave me the deep feeling that it would be impossible for me to write or speak about disability from the classical standpoint. And, as an able bodies person, I felt strongly hesitant to do so. It took quite a while to discover my voice. More and more – especially in my work with clients who had disabilities – I became transformed into a witness, and this allowed me to gain insight and the strong conviction that it is the person with a disability who is the expert, not I, nor the doctors, nor the social workers! This person knows what it is like to have a disability, and we, as able-bodied psychotherapists/analysts, do not. Therefore, my work in psychotherapy and analysis is firmly based on the conviction that the person with a disability is the expert. I also am convinced that until psychotherapists/analysts have integrated this change in paradigm related to disability research/studies, they should not work with clients who have disabilities.
People with physical disabilities are the primary experts. Others – medical doctors, theologists, psychotherapists, and people without physical disabilities – can be helpful if they do not forget this basic principle.
“Instead of being only objects of research, people with physical disabilities will – in the context of disability studies – become subjects of research. Their experiences, encounters and opinions will be the focus of future studies.” (Congress, University of Bremen, Germany, on “Disability research/studies”, 2003, translation)