Creating Disability

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Biology 202

2006 First Web Paper

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Creating Disability

Bethany Canver

There exist innumerable ways in which the nervous system can be organized and these permutations are what give rise to the heterogeneity of humanity. Yet the manifestations of certain arrangements of the nervous system have been labeled "abnormal" by medical professionals whose pronouncements have resulted in the devaluation of individuals having these "abnormal" brains. Medicalization, or "the application of medical knowledge to an increasing range of social problems" (Barnes and Mercer 27), affords professionals the authority to ascribe value-laden labels to their patients which often justifies the oppression of those persons whose neuro-anatomy or function deviates from the medical norm. This medical norm provides the ideal to which persons deemed "abnormal" are often pressed to achieve by way of preventative and rehabilitative medicine. The invasive and intrusive presence of medical professionals in the lives of persons with, for example, cerebral palsy, has perpetuated the oppression of this group by the dominant, able-bodied population.

Because of the variability of clinical effects, severity, and causes, cerebral palsy which affects roughly 500,000 individuals in America, is broadly defined as a non-progressive condition resulting from a brain abnormality acquired during the early stages of life which affects motor function. Etiologically, the assumed causes of cerebral palsy can occur during either the prenatal, paranatal, or postnatal stages of development. Cerebral palsy is unique in that an etiological evaluation points not to a single, definite cause, but rather to a plethora of possibilities. During the prenatal stage, a family history of genetic disorders like Wilson's Disease1, Schilder's Disease2, or Lindau's Disease3 may cause cerebral palsy as might the mother's contraction of rubella while the fetus is in utero. In the paranatal stage, a particularly lengthy or abnormal labor during which the baby is breech, forceps are used, a Caesarean is preformed, or excessive hemorrhaging occurs have been pointed to as causes of brain damage that could manifest itself as cerebral palsy. An additional complication that might cause brain damage to occur during the birthing process is an untreated Rh/ABO incompatibility between mother and child. Prematurity and anoxia, or a lack of oxygen, occurring during the birth process can also be a possible cause of cerebral palsy. Anoxia causes cell damage in the cerebral cortex as well as brain lesions and atrophy of the cortex. After birth cerebral palsy can be acquired as the result of brain damage due to head trauma, an infection like meningitis, anoxia, or the ingestion of toxins. Traditionally anoxia has been thought of as the major cause of cerebral palsy, however it is difficult to definitively determine the etiological acquisition of cerebral palsy.
From a clinical perspective cerebral palsy is defined as either spastic or extrapyramidal. Spastic cerebral palsy, which results primarily from damage to either the pyramidal tract or the cerebral cortex, manifests itself as stiffness or tightness of muscles. It is the predominate form of cerebral palsy, affecting 70-80% of all diagnosed individuals. This effect to the muscles can affect one side of the body (hemiplegia), both legs (diplegia), or all four limbs, trunk, mouth, pharynx, and tongue (quadriplegia). Damage to the basal ganglia and/or the cerebellum results in extrapyramidal cerebral palsy which is clinically expressed in a more varied manner than spastic cerebral palsy. For example, these clinical expressions can be athetoic- slow, writhing of the upper extremities- or ataxic-disturbances in balance and depth perception. Brain damage, which may manifest itself as cerebral palsy, can be detected using magnetic resonance imaging (MRI), computed tomography (CT scan), or ultrasound.

The treatment of cerebral palsy is guided by the traditional view that it is first and foremost a "medical issue" (Barnes and Mercer 2). Once diagnosed, the lives of individuals with cerebral palsy become increasingly dominated by "specialists"4, primarily from the medical field, who aggressively pursue rehabilitative techniques and procedures5; these techniques include surgery, occupational and physical therapy, and medication. Ultimately they are attempts to alter the individual with cerebral palsy so that they more closely resemble and function like the prescribed anatomical and physiological norm held by doctors. The treatments that individuals with cerebral palsy receive are exercises in normalization which tend not to be rooted in actual medical necessity but rather cultural value (Barnes and Mercer 37-38). Medical professionals reinforce this idea that cerebral palsied bodies do not conform to the standards that constitute a "normal" human body by actively trying to prevent the births of cerebral palsied infants. A great deal of care is invested in preventative medicine and in the event that this approach fails a women who is carrying a child who is suspected of being cerebral palsy (or brain damaged in any way) is encouraged to consider terminating her pregnancy6. Not only does the "normalizing gaze of modern science" (Barnes and Mercer 30) aid the argument in support of eugenics but it also has spawned an extensive economic empire made up of health services, rehab, devices, therapies, drugs, insurance and technologies7. There are many who stand to lose in the economic realm if society begins to look at cerebral palsied bodies as an acceptable alternative that does not need alteration.

It is not problematic that doctors make distinctions and critical assessments of their patients. It is, however, problematic when there is "established a hierarchical standard for pronouncing some bodies and minds as abnormal and inferior in terms of appearance and performance" (Barnes and Mercer 20). The diagnosis of cerebral palsy is associated with a label which stands in direct opposition to the values that are revered in society. For cerebral palsied individuals their diagnosis often means that they will typically be perceived as, "unfortunate, useless, different, oppressed and sick" (Barnes and Mercer 9). The value attached to being labeled as disabled has a profound affect on the lives of those diagnosed with cerebral palsy. These individuals often undergo invasive surgery and various other medical procedures that can be painful and are followed by a lengthy recovery period, not to mention the discrimination and oppression they experience on a daily basis. People who are labeled as disabled by conditions like cerebral palsy are largely secluded from the rest of society into special education classrooms, group homes, and sheltered workshops8. Their access to education and employment is severely diminished compared with their able-bodied counterparts. Unfortunately, as Freidson asserts, "it is very difficult to remove a medical label" (Barnes and Mercer 4) because of the tremendous authority contemporary American society ascribes to science and medicine. Medical professionals are looked to for "facts" and "certainties" which, though they do not exist, often guide how the society behaves towards cerebral palsied individuals.

The argument being made is not that the medical profession is universally at fault for the oppression of the disabled nor is it aiming to diminish the importance of medicine in the lives of those with legitimate medical conditions that limit their pursuit of a certain standard of living. Rather the question that is being posed is whether or not cultural values are the true driving force behind diagnosis and treatment, specifically with regard to cerebral palsied individuals? Though it is fairly clear that the events that occurred during the early development of individuals with cerebral palsy altered their brains in ways that is manifest in their behavior, the connection between those clinical signs or behaviors that are associated with cerebral palsy and the brain is not as well understood as it might someday be. If Emily Dickenson is right and brain does in fact equal behavior, a more appropriate treatment of cerebral palsy involves the brains of the non-cerebral palsied- the able bodied- who can use their brains in order to change their behavior toward the disabled. Perhaps the most effective treatment of cerebral palsy involves getting the able-bodied to conceive of the disabled, not as pitiable tragedies in need of medical attention, but as examples of the variation that exist within humanity.

1. Hepatolenticular degeneration
2. Cerebral scleroses
3. Hemangioblastoma of Cerebellum and Retina
4. "The end result for disabled children and adults was a widening professional involvement in their lives" (Barnes and Mercer 28-29).
5. "The assumption here is that the individual body which is at fault can be treated largely by medical interventions and technologies" (Butler and Parr 3).
7. "Whatever the stated aims, their latent function has been to create and sustain large numbers of dependent and devalued people in order to secure employment for health and social care staff and profits for private companies (Wolfensberger 1989:37)" (Barnes and Mercer 37).
8. "People with impairments are subjected to wide-ranging processes of social exclusion" (Barnes and Mercer 10).
"Indeed, medical interventions such as surgery or 'mind-changing' medication remain acceptable ways of addressing disability- since the 'cause' is located in those with an impairment, rather than in the society or groups which discriminate against such individuals" (Barnes and Mercer 20).

Barnes, Colin and Geof Mercer. Disability: Key Concepts. Massachusetts: Polity Press, 2003.
Butler, Ruth and Hester Parr. "New geographies of illness, impairment and disability". Mind and Body Spaces. Ed. Ruth Butler and Hester Parr. New York, NY: Routledge, 1999. 1-24.

Crothers, Bronson M.D. and Richard S. Paine, M.D. The Natural History of Cerebral Palsy. Cambridge, MA: Harvard University Press, 1959.

Cruickshank, William M. and George M. Raus. Cerebral Palsy: Its Individual and Community Problems. NY: Syracuse University Press, 1955.

"Culture as Disability."

Dorn, Michael L. "The moral topography of intemperance." Mind and Body Spaces. Ed. Ruth Butler and Hester Parr. New York, NY: Routledge, 1999. 46-69.

Gleeson, Brendan. "Can technology overcome the disabling city?" and Body Spaces. Ed. Ruth Butler and Hester Parr. New York, NY: Routledge, 1999. 98-118.

Imrie, Rob. "The body, disability and Le Corbusier's conception of the radiant environment". Mind and Body Spaces. Ed. Ruth Butler and Hester Parr. New York, NY: Routledge, 1999. 25-45.

Obaray, Jabeen.

Park, Deborah Carter and John Radford. "Rhetoric and Place in the 'mental deficiency' asylum." Mind and Body Spaces. Ed. Ruth Butler and Hester Parr. New York, NY: Routledge, 1999. 70-97.

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