In my work, I often conduct behavioural assessments of individuals whose behaviours pose concerns to themselves, family members, caregivers, or general community members. My social work training gives me one perspective, as does my training in pastoral counseling and positive behaviour support. However, it is my experience of writing poetry that gives me the broadest set of skills to listen to people and to listen not to the words but to everything that surrounds the words.
As a poet, I have learned to listen to the themes of life which words represent. In my current role as a behavioral consultant, I listen for the themes of the story and the patterns of life and death, hope and despair emanating from the person I am listening to. One woman named Isabel for purposes of this article had been kidnapped as a teenager by a motorcycle gang in an American state. She was affected by an intellectual disability and was a sexual slave for 5 years. When she was no longer of use to the group, she was abandoned and eventually placed in a group home for people affected by intellectual disabilities.
She told people that she had borne a child, but could not explain where the child was or what happened to the child. She did not know the gender of the child, and when asked to explain what happened, she said “I was on a bed and a little helicopter was over me. People used a ladder to climb down from the helicopter and took my baby away.”
Prior to my work with her, the behaviour support plan for Isabel was based on her diagnosis of delusional disorder. Because of her intellectual disability she was not considered to be a candidate for therapy and her “ramblings and delusional statements” were ignored. This gave rise to periodic bouts of depression, and she was placed on anti-depressants.
In listening to her story, I interpreted her story thematically to provide a second explanation.
Imagine yourself pregnant, on a gurney and being rolled into an operating room. A bright light is above you, and from the light you see hands and fingers moving up and down. You are on medication which makes your vision blurry. You know you are pregnant and that a baby is inside of you. You see the baby lifted up towards the light, never to be seen again. Because of your intellectual disability you have difficulty finding the right words to describe what happened, so you use the words and images from your experiences, including watching television shows.
Listening to the stories of people to gain insight into the themes of their stories requires putting ourselves into their lived experiences as much as possible. This empowers the creation of a hypothesis for what happened to the person you are listening to, and actually using that question – “what happened to you?” – rather than focusing on questions such as “what is wrong with you.”
Listening to the second explanation for this woman’s perceptions of what happened to her provided an alternative explanation for her perception of what happened. By listening to her story and affirming the fear and loss she felt, her behaviour changed and the anger that surrounded her dissipated. Her delusions were alternative interpretations of factual events, a way of understanding what she could not comprehend potentially due to the effects of the anesthetic.
This woman is not alone in her loneliness and despair. David Pitonyak writes movingly that Loneliness is the Only Disability. (Pitonyak, 2003) Having gotten your attention with that title, it may be more factual to say that “loneliness is always the primary disability.” By addressing the relational needs present in everyone’s life, people are generally more able to move forward with their lives because of the presence of hope. Other people can be the source of hope, but not always.
Trauma, things like abuse and neglect, happen because of the actions of other people. The term “deathmaking” was invented to describe what happens when people are put on too many psychotropic medications, when they are forced to live with other people they don’t know, when they are devalued, living on the margins of society, and whose lives were shortened by the effects of abuse and the overuse of psychoactive drugs. (Wolfensberger, 2002) On average, the experience of significant trauma results in a loss of 20 years from average lifespans. (Brown et al, 2005)
As early as 1936, people were aware of the psychological abuse which comes from the use of power on the part of well-meaning staff who respond to the behavior, not the person using the behavior. (Bryan, 1936) Those of us who provide services and supports to others have significant power over those in our care, whatever the setting may be. The trauma which occurs within institutions is increased by the power differential between the servants and those they serve. (Smith & Freyd, 2014)
Life and death, despair and hope are the four points of the quadrant in this model which depicts the struggle of individuals affected by disabilities. For many people “the challenge of life is to learn how to balance hope and despair, to learn how to live with the inevitability of death and suffering.” (Breitbart, 2005, p57)
Allies in Emancipation: Moving From Providing Service to Being of Support (O’Brien & Sullivan, 2005) is a collection of essays on how people who have focused on providing services can move to “being of support”, a term which provides a counterpoint to the service model ingrained in most human service systems. It starts with the attitude of listening to the answers given to the question – what happened to you when . . . – it is this question, in all its’ myriad forms, that can move us to an attitude of listening to the communication of the person, both in words and behaviour. It is this attitude of listening that moves us towards the question – how can I be of support? This is a lifemaking question, by which we can give up our power and control, hidden within multiple service systems, and move to a position of offering support.
Bob Bowen
References
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Bryan, WA (1936). Administrative Psychiatry, New York: WW Norton & Company
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Pitonyak, D (2003). Loneliness Is The Only Real Disability: Implications and Recommendations for Policymakers. Retrieved from http://dimagine.com/wp-content/uploads/2018/03/NASDDS.pdf April 19, 2011.
Smith, C. P. & Freyd, J. J. (2014). Institutional betrayal. American Psychologist, 69, 575- 587.
Sullivan, L (2005). Building alliances after deleting disabling assumptions. In Allies in Emancipation: Moving From Providing Service to Being of Support. Patricia O’Brien and Martin Sullivan, Editors. Page 163-171.
Wolfensberger, Wolf P. (2002). The new genocide of handicapped and afflicted people (3rd rev. ed.). Syracuse, NY.