Quality of life can be elusive and complicated for all individuals and can be dramatically so for people with traumatic brain injury who are globally challenged. Physical prowess, cognitive functioning, family, friends, sexuality, employment and hope are among the markers of a quality of life that may be jeopardized or lost for many with TBI. These losses and/or perceived losses combined with a lowered threshold for mediating one’s emotional state, commonly give rise to demonstrations of anger and hostility. This article is intended to provide the reader with an alternative therapeutic strategy to address these behaviors which interfere with a quality of life. If my life has no meaning or value, then I will behave in a way to cause your life to be void of meaning and value as well. When this statement was first shared with me I was struck by its profound implication relative to a variety of quality of life issues affecting many people with TBI. It was immediately evident that for a significant percentage of people with TBI, especially those requiring pervasive supports, that their life lacks meaning – diminished of value.
I have come to understand that oppressed individuals, that is individuals denied opportunities to make decisions and choices – precluded from self-determination, are subject to behave in ways that impair the quality of life of their perceived oppressor as well as themselves. This phenomenon is called ANOMY. Anomy is a word of French origin and is the derivative of the word anonymous. Individuals thwarted in their attempt to manage their own lives and realize self-determination, experience anomy. Rehabilitation environments and long term care environments that control the individuals’ schedule, diet, rituals, routines and relationships may unintentionally promote anomy. In this article I will address one influence impacting quality of life for people with TBI and thus contributing to anomy; supporting positive rituals.
“I was not yet dead, but little of life remains.” Dante Alighieri
We observed a dramatic example of anomy during the summer of 1992 in South Los Angeles when large numbers of individuals rioted and pillaged. In the opinion of many sociologists this was a consequence of anomy. These individuals believed that they had little to no control over their own lives. Those who rioted felt powerless to control their destiny- they were subjected to the controls of others which from their perspective prevented any opportunity for economic or social justice; they were individuals just trying to survive, thus anomy.
Individuals with TBI are not likely to riot and loot in response to their anomy. Their cognitive and physical challenges will influence the manner in which their anomy is expressed. For example, individuals denied the basic rights to select or influence who will touch their bodies when being assisted in bathing and other personal hygiene activities are more susceptible to experiencing the effects of anomy.
Anomy may manifest itself in the form of self-injurious behavior, verbal assault, property destruction or aggression toward others. It is evident that the lives of many of the men and women we support, who demonstrate interfering behavior, are lives that are highly managed and controlled by others. The behavior management plans imposed, the schedules of reinforcement utilized, the level systems implemented, the planned ignoring devised are all examples of attempts to control and manage individuals with TBI; they are examples of our attempt to rehabilitate – a “DO TO” approach.
We must assure that the individuals with TBI have every possible opportunity to manage and control their own lives. We must be creative – challenging old assumptions regarding rehabilitation. We cannot justify the restrictions and controls we place on people by passing them off as regulatory requirements or clinical best practice.
Unfortunately, anomy is commonly nurtured in the same rehabilitative or therapeutic environment that we have celebrated as the means for improving the quality of life for people with TBI. That’s right, to a great extent; the “treatment” is the cause of the “disease”! The vast array of clinical interventions (e.g. OT, PT, Dietary) utilized to maximize activities of daily living, and behavioral hierarchies of intervention (e.g. behavioral contracts, non-seclusionary time out), to manage inappropriate behavior, both may now be identified as the primary cause of the inappropriate behavior. The more physically, cognitively and behaviorally challenged an individual becomes the more clinically intrusive we are expected to be; thus the more anomy we create; resulting in more inappropriate behavior and the dance goes on. The more inappropriate the individual’s behavior the more we turn the clinical screws.
I refer to those behaviors which emanate from anomy in the treatment environment as nosocomial behaviors. Not unlike nosocomial infections; infections that may occur in a health care setting as a result of the treatment procedures, nosocomial behavior can be a consequence of our rehabilitative efforts. I wish to clarify that rehabilitative services need not cause nosocomial behavior any more than medical treatment in a hospital must result in noscocomial infection.
The most effective anecdote to anomy is to support the individual in their positive rituals. This requires the use of sensitivity and empathy. Identifying and promoting the rituals of individuals who are globally challenged is empowering; it deters the effects of anomy. Respecting the individual’s rituals provides some degree of continuity in the individual’s life, despite the significant losses experienced. Perhaps the majority of rituals in which the individual engaged prior to their injury may never be recaptured. Thus it is all that more important that those rituals that can be experienced post TBI be nurtured and promoted. This requires a greater understanding of who that person was and is – many questions must be asked; observation must be conducted.
An unintentional result of the rehabilitation environment or long term care setting is an indifference to a person’s rituals. The schedules that are imposed, the protocols to be followed and the treatment to be administered often fail to demonstrate sensitivity to the individual’s rituals. Administrate expedience and/or clinical efficacy may further impair an individual’s opportunity to practice their rituals. Our respect for those rituals may be a powerful vaccine in the prevention of despondency and anomy.
I have spent considerable time thinking how my life would be affected if someone denied me the opportunity to choose the rituals which have become my essence. For example, waking up in the morning to the sounds of my favorite classical music radio station, savoring a cup of black coffee before my shower, shaving in the shower or brushing my teeth with toothpaste I ordered from a specialty catalog in Maine.
Each of these events (rituals) as well as the many hundreds of others which follow throughout the course of everyone’s day is uniquely “you.” I actively choose my rituals as they evolve and develop over time – the evolution of my rituals is an ongoing process. These rituals provide me with a sense of security, predictability and continuity in my life. How unsettling and tragic it would be if all my quirky mealtime rituals, like salting everything before tasting, using a teaspoon to eat my soup, etc. were prohibited.
Many people with TBI who require the assistance and support of others in their daily routines are denied the joy of rekindling the rituals from their past. The barriers to practicing positive rituals do not come from malicious or indifferent attitudes on the part of those who provide support. Those who have accepted the challenge of providing support to persons with TBI, do so with the clear intent of helping people improve their quality of life. We too often allow our zeal to rehabilitate to obscure people’s attempts to engage in the personal rituals that are meaningful to them – the rituals of their past; the rituals that define their essence.
In our drive to assist the person in gaining greater independence we may miss the importance of who that person is and how they wish to express their individuality thorough positive rituals. For example, conventional occupational therapy protocols may fail to account for the person’s desire to wash their hair at the end of their shower rather than at the beginning or wishing to coat their peas and mashed potatoes with catsup rather than eating them in a more conventional way.
This ignorance of the person’s positive rituals results more often than not from our failure to listen to what the person is communicating to us. We must apply both attention and tolerance if we are to assure that the person with TBI is afforded every opportunity to engage in positive rituals of their choice, the rituals they hold sacred.
When we support people whose verbal skills have been impaired we must listen with our eyes. Our observations of the individual’s preferences of options offered should speak loudly. We must use these observations to structure opportunities for engaging in preferred positive rituals. It is in part the carrying out of these rituals by people who require pervasive support that proclaim that they are on the road to “getting a life” and overcoming the tragic effects of anomy.
Dr. Tom Pomeranz is a nationally recognized trainer, clinician, author and consultant in the field of disabilities in the USA. He is the president of Universal LifeStiles, a company committed to supporting individuals with disabilities to have enviable lives. To learn more about Dr. Pomeranz and his services go to www.universallifestiles.com or contact him at firstname.lastname@example.org or 317.871.2092.