I am afraid of being admitted to a hospital. I am not afraid of getting sick but rather worry about how I will be treated once I am admitted to a hospital. Caring for one's paralyzed body is not difficult but there are certain things such as skin care that require more vigilence. If hospitalized I may need help and being dependent upon nursing care is risky proposition. Today, even the most dedicated nurses cannot possibly provide the sort of treatment they would like to provide. Hospitals are run like a business and crippled people are a bad investment. Crippled people may require more care. Even worse, crippled people are thought to be complicated, that is their care and medical history is involved and will force medical personnel to spend more time with them. When these variables are combined with the belief that the life of a crippled person may not be as valuable as that of another person who can walk my level of concern rises exponentially.
My friend who is a physician's assistant thinks my concerns about being hospitalized are unfounded. I hope she is correct because it has been a bad year for crippled people who enter the hospital. This thought struck me today when I read Disability Studies at Temple University blog (disstud.blogspot) about the death of Linda Sue Brown. As reported in the LA Times, after Ms. Brown died her sisters were stunned by what they discovered--consent forms were forged and the care she received was questionable at best. I for one am not surprised that Ms. Brown received poor treatment, was subjected to what appears to have been risky surgery--a hysterectomy. The fact is Ms. Brown did not have the cognitive skills to consent to surgery but that did not stop surgeons from operating on her. This story reminds me of the Ashley Treatment I wrote about earlier this year for Counter Punch. Both Ms. Brown and Ashley were subjected to surgery that violated their rights as patients. Both families were involved--in Ashley's Case her parents consented to the removal of her uterus, breast buds, appendix and spleen as part of what they identified as the "Ashley Treatment". In Ms. Brown's case her sisters questioned the treatment she received and after months of investigation inspectors concluded the hospital failed to provide appropriate care.
The issues involved in the care and treatment of Ashley and Ms. Brown are quite different. But what links them is the violation of their rights. Both had loving families, were admitted to a hospital, and were subjected to surgery that was not legal. Why did these hospitals fail to protect their rights? What does this failure say about the treatment and cutural perception of crippled people? In my estiamtion, these cases highlight that the medical establishment does not value the life of crippled people. Hospitals and surgeons are more likely to perform risky surgery on crippled people because they think they are in desperate need of repair. What are the consequences of these actions? Not much, the hospitals in question receive bad publicity and no one is held legally accountable. Patients, even crippled ones, have rights and it well past time hospitals were made aware of that fact. I for one plan on memorizing a Patients Bill of Rights before driving to any hospital.
Paralyzed since I was 18 years old, I have spent much of the last 30 years thinking about the reasons why the social life of crippled people is so different from those who ambulate on two feet. After reading about the so called Ashley Treatment I decided it was time to write a book about my life as a crippled man. My book, Bad Cripple: A Protest from an Invisible Man, will be published by Counter Punch. I hope my book will completed soon.
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Tuesday, September 11, 2007
Fear of Hospitals
Posted by william Peace at 9:03 AM
PhD 1992 in anthropology Columbia University, I am interested in disability rights and bioethics.
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You wrote this nearly 10 years ago. Do you believe things have improved?
In a word, no. In fact, I would argue things are worse given the turmoil Trump has created in trying to repeal and replace the affordable health care act.
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