In her book, Maintenance of Life, Frances Norwood departs from previous definitions of social death, properly widening its scope. The previous definitions limited the occurrences of social death to very specific domains at the margins of life. As cited in Norwood’s first chapter, Erving Goffman first coined the term when referring to the treatment of mental patients and subsequent definitions were limited to the treatment of patients in hospitals (1996, 6-7). Norwood argues that social death “is probably best described as a series of losses – loss of identity and loss of the ability to participate in social activities and relationships that eventually culminates in a perceived disconnection from social life” (1996, 7). This is a more accommodating definition of social death. A definition that potentially describes what happens to chronically ill patients living with degenerative diseases such as Alzheimer’s, Parkinson’s and Amyotrophic Lateral Sclerosis (ALS). Specifically, the theory of social death, in Norwood’s terms, can help explain why many of the victims of these diseases suffer from depression. The following is an investigation of the common symptoms of Parkinson’s Disease, how they relate to social death and how the experience of social death of Parkinson’s patients could account for their depression.
Parkinson’s Disease, according to the National Parkinson Foundation, the National Institute of Neurological Disorders and Stroke, and Parkinson’s Disease Foundation, is a slow progressing neurodegenerative brain disorder that negatively affects a person’s motor system. The four primary motor symptoms of Parkinson’s Disease are tremors, bradykinesia (slow or incomplete movement with difficulty initiating movements as well as sudden stopping of movement), rigidity and postural instability. There are several secondary motor symptoms of the disease such as speech problems, loss of facial expression, difficulty swallowing, sexual dysfunction and impaired fine motor dexterity and motor coordination, to name a few of the more acute symptoms. There are also some common non-motor symptoms such as cognitive difficulties, compulsive behavior problems and sleep disturbances, again, to name just a few. Parkinson’s patients are usually on medication or undergo surgery to slow down the degenerative process of these symptoms but there is no cure. The severity of these symptoms increases over time and Parkinson’s patients often live with these symptoms for up to 20 years or more.
PARKINSON’S DISEASE AND DEPRESSION
According to the Parkinson’s Disease Foundation website “[d]epression is one of the major, and most common, difficulties that faces people living with Parkinson’s”. Although there is no definitive answer as to what causes this depression, researchers suggest that in the early stages of the disease, it’s a normal reaction to their anticipated reduction in quality of life. In the later stages, clinical depression is due to chemical deficiencies in the brain. What neither of these theories addresses however, is the actual series of losses that Parkinson’s patients experience long after the initial shock of learning they have the disease. Chemical deficiencies are of course a viable explanation but may not be the only explanation. It seems that social death as Norwood describes it, could be another explanation for clinical depression in Parkinson’s patients. These “series of losses… eventually culminates in a perceived disconnection from social life” (Norwood 1996, 7). The next few paragraphs describe some of the symptoms of Parkinson’s Disease and demonstrate how they support Norwood’s definition of social death; specifically (1) the loss of the ability to participate in social activities and (2) how that loss can result in the loss of relationships and/or identity.
LOSS OF THE ABILITY TO PARTICIPATE IN SOCIAL ACTIVITES
Loss of the ability to participate in social activities is a particularly devastating result of this disease because it often results in losses of relationships and identity. Speech problems are a secondary symptom of Parkinson’s Disease where 89% of people with Parkinson’s experience a “soft, monotone, breathy and hoarse voice and imprecise articulation” that makes them hard to hear and understand (Ramig 2008, 1). In Dr. Lorraine Ramig’s paper, “The Science and Practice of ‘Speaking LOUD’” she quotes a patient who says, “If I have no voice, I have no life” (2008, 1). Ramig reports that people suffering from this symptom are less likely to engage in conversation or to exhibit confidence in social settings. They slowly lose their ability to participate in social activities because conversation becomes more difficult over time with the progression of the disease.
A person suffering from postural instability, one of the four primary symptoms of Parkinson’s can also experience a loss of ability to participate in social activities. A patient who has postural instability will experience diminished balance and coordination which increases their risk of falling. This symptom also causes a person to have periods of arrested movement where they find themselves “stuck” and find it difficult to start moving again. Postural instability makes it difficult to participate in social activities that require physical movement. Even something as simple as walking becomes more difficult over time where patients will participate less in social activities because of their risk of falling.
Cognitive changes are another symptom of Parkinson’s Disease that can negatively affect a person’s ability to participate in social activities. According to Dr. Laura Marsh in her paper, “Not Just a Movement Disorder: Cognitive changes in PD”, “alterations in memory, attention and thinking…are often part of PD [Parkinson’s Disease]” and can become severe enough to be labeled “Dementia” (2008,1). One type of cognitive change experienced is “Executive Dysfunction”. Executive Dysfunction affects mental processes such as problem solving, planning, task completion and multi-tasking. People experiencing this symptom will have increasing difficulty these cognitive processes which can affect their ability to participate in social organizations or clubs. They essentially have a hard time “keeping up” with the mental pace of others and will often withdraw from these interactions altogether.
LOSS OF RELATIONSHIPS, IDENTITY
The loss of the ability to participate in the social activities described above can result in a loss of relationships or identity. If one experiences a loss in their ability to communicate because of their soft and/or poorly articulated speech, their relationships with other people become affected. Remember, the patient in Dr. Ramig’s study who said, “if I have no voice, I have no life”. If a reduction in motor skills renders a person unable to participate in a favorite sport or activity they can risk losing some aspects of their identity as well as any relationships maintained through that activity. And people living with Parkinson’s Disease also experience cognitive changes that not only negatively affect their participation in social organizations and clubs but can result in a loss of identity because overall they’re not able to participate in life as their non-Parkinson’s-selves would.
What I hope has been demonstrated here is that the progressive symptoms of degenerative diseases, in this case, Parkinson’s Disease, can represent a kind of social death. These symptoms result in a “series of losses – loss of identity and loss of the ability to participate in social activities and relationships that eventually culminates in a perceived disconnection from social life” (Norwood 1996, 7). This social death theory is another look into the possible causes for clinical depression in patients with chronic degenerative diseases, that goes beyond the initial shock and later stages of chemical deficiencies. Social Death theory may be a helpful tool for patients in order to understand their depression themselves. As Norwood presents in her book, Clive Seale (1998) explains that one strategy for maintaining social bonds, to curb the loss of social activity, relationships and identity, is through therapeutic discourse (1996, 8). For this reason, Social death Theory could be an advantageous medium through which patients and doctors alike gain insight to clinical depression in patients with chronic degenerative diseases.
Marsh, Laura MD. 2008. Not Just a Movement Disorder: Cognitive Changes in PD. https://www.pdf.org/pdf/fs_cognitive_changes_08.pdf (accessed October 24, 2010).
Norwood, Frances. 2009. The Maintenance of Life: Preventing Social Death trough Euthanasia Talk and End-of-Life Care – Lessons from the Netherlands. Durham, North Carolina: Carolina Academic Press.
Ramig, Lorraine MD. 2008. The Science and Practice of ‘Speaking LOUD’. http://www.pdf.org/pdf.fs_speaking_loud_08.pdf (accessed October 24, 2010).
All factual and statistical information about Parkinson’s Disease came from three organizations’ websites: National Parkinson’s Foundation, National Institute of Neurological Disorders and Stroke and Parkinson’s Disease Foundation.