Dr A.I. Jacobs of Wierda Park, Pretoria addressed the issue of at the SAAP open day in November 2007.
People who live with a physical impairment often need pastoral counselling participation at various stages of their lives. Disability can result in physical barriers and in turn subject the individual and family members to various social changes in their lives.
An altered body-image may shift these people to a fixed identity based on the perfect body-image shared by society’s perception about disability. Being ignored as a full person can make identifying with people of their communities a major lonely task for people who are disadvantaged physically.
A type of therapy with people who live with disabilities may be described as pastoral participation in the individual and collective narrative accounts of living with a disability. It is based on the psychosocial model for chronic illness of JS Rolland, which addresses not only the disease, but also the context of the individual and the family members. In relation to disability, individual and family (significant others) members are addressed in the context of a sense of belonging.
In the narrative approach, stories are heard of the individual and collective significant others as they become “entangled with one another” and where the shaping of both personal and collective identity occur.
The metaphor of “disability as member of the family” is understood as including disability as an ongoing experience with the individual, family members, and significant others. It is the interaction between the disability, individual and collective others that result in certain biological, psychosocial and spiritual developments. The aim of this pastoral counselling is to restore connectedness with society, dignity and relief from isolation and loneliness during time-related periods and phases of crisis, grief, marriage/family conflict and life-style changes re-construction.
The counsellor needs to deconstruct myths about disability and enter the person’s experience as a caring participant in the process of healing and restoration of relationship with the self, significant others, God and society. It is important to develop a relationship of respect, love and trust in this process of mutual participation. Narrative pastoral participation involves shared participation of the counsellor with the client(s). The client and significant others are empowered through optimal involvement and shared participation in the healing process. Hence, the process is open participation that takes place in a context that is inter-disciplinary and relies on trusted professionals for referral.
Examples of five people living with disabilities from two research projects and counselling situations will give some idea of the need of pastoral participation in lives of people who live with physical impairments. Anger, confusion, disillusionment with God and depression may be a constant or intermittent companion for a person living with a disability. Jen, who lived with chronic pain, speaking with intense emotion and flushed face, described her frustration for being so stupid to have spent time studying in a field that was brought to an abrupt halt because of chronic pain. She expressed feeling frustrated, angry and helpless. She experienced a sense of lost dignity because of the role expectancy changes in her life.
In a counselling situation with a person with C4/5 quadriplegia and her daughter who was the sole care-giver, it was apparent that they were experiencing difficulty dealing with the transition between the crisis time-related phase of post-trauma and the chronic adaptation period.
Difficulty of the transition resulted in isolation of mother and her daughter. Blame, guilt, unforgiveness and unresolved conflict between both individuals and all family members were evident. The metaphor “of painting a picture” was used to describe narratives of family conflict. They both came to the conclusion that another picture of unresolved conflict had emerged.
The focus of the general family conflict was used as a smoke screen to conceal the fear of dealing with the future. The daughter, at twenty six years of age, wanted to re-construct her own life, but the role of sole care-giver prevented her from doing so. The unresolved conflict situation kept them in a fixed mode of staying in the present situation because they feared dealing with the future.
When asked about their plans for the future, the daughter replied: “A big stop sign. Dark… I can’t... I don’t know where to start”. The daughter later decided to move out of the home of her mother to start a life of her own choice while her mother chose to stay in the same fixed mode of coping. She remained bedridden while her own mother took over the role of sole care-giver.
Grieving and mourning the changes from pre-trauma to post-trauma situations were common experiences for all respondents from the empirical research studies. The loss of a sense of belonging was evident and the lack of availability of counselling was expressed. Reg, a quadriplegic, said he had become very angry. His minister did try to counsel him, but it was frustrating because it was really just a short discussion. He resorted to relying on his friends and family to encourage his relationship with God.
The sense of non-belonging and the struggle with unforgiveness united when Tess, a C4/5 level quadriplegic, because of impaired regulation of body temperature was unable to attend her church meeting for long periods. The church leaders refused to serve her the Eucharist in her home during the periods of absence from church worship. Her father interpreted this decision as denying his daughter a vital part in the religious identity of their faith community. Not only did Tess experience a denial of a sense of belonging, but her father struggled with unforgiveness toward the church leaders and did not go back to church for eighteen years.
The stories above give a limited insight into the complication of living with a disability. Often, what happens in the past, sets the tone for the present and can reflect positively or negatively on the future. The emerging plots of bodily impairment restrictions, financial stress connected to entangled narratives of unresolved conflict in family relationships and mourning various losses from complex physical, social and spiritual changes can make present circumstances complicated and future prospects frightening. There is a need for pastoral counselling participation with the person living with a disability in situations of crisis, grieving losses, unresolved marriage/family conflict to enable empowerment to manage numerous changes in life-style and its physical, social and spiritual consequences.
