This weekend my son added to his growing collection of stitches. On Friday afternoon I received a call from the school nurse that I needed to pick him up ASAP because he had just cut himself and would need stitches to close the laceration. I left home immediately and had no trouble finding the nurses office--I simply followed the blood trail my son left behind him. After a few minutes the nurse walked me and my son to our car and wished us well. Within 20 minutes we arrived at the local ER. This is all very ordinary--that is until we entered the hospital. The first person we met was the triage nurse who directed each and every question to my son and seemed perplexed by my presence. In a questioning tone she asked "You are his father?" Yes I answered and after she took a quick look at my son's wound we were directed to the waiting room. The next person we met looked equally perplexed and asked "Who is the patient?" This was decidedly odd given the fact my son had a fresh bandage wrapped around his hand. Then he too asked "Are you his father?" Again I answered yes and this reply really confused him. This man then asked "So, you are his parent and legal guardian?" I realized then that the question was directed to my son and a patern quickly developed. Each person we spoke to asked me if I was the father and then proceeded to ignore me.
While in the ER my son was asked questions that should have been directed to me--like "what is the name of your insurance carrier?" No child knows the answer to this question nor should they be expected to. Very quickly I realized I was perceived to be somehow less human--not sentient. My ability to parent was openly questioned as was my competence. I have no doubt most of those I met felt bad for my son--the poor kid needs stitches and needs to care for his crippled father. Not once did it dawn on those working in the ER that I could be good parent.
Over the last few days my experience has led me to wonder if other disabled parents have had similar problems--this was not the first time my ability to care for my son has been called into question by strangers. The trip to the ER also made me think about the problems disabled people encounter when they try to direct their own health care choices (see a recent post on Gimp Parade). This weekend reinforced my deep concern about what will happen to me when I get sick. Will some doctor assume my life has less value because I cannot walk? If so, am I going to receive substandard care. The sad fact is that many in the medical community preceive disabled people to be failures. This perception can affect medical care and I for one am deeply worried when I am hospitalized. I worry first about my rights as a human and secondly about the care I will receive.
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, November 13, 2007
Hospital Settings and the Lack of Rights
Posted by william Peace at 6:54 AM
PhD 1992 in anthropology Columbia University, I am interested in disability rights and bioethics.
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it's so disappointing to experience this... i find that these situations are what bring me back to reality (ableism, discrimination, paternalism) when i am thinking otherwise.
Yes, my experience was disappointing. One would think highly educated people who dedicate their lives to helping others would be more open minded. The incident in question was minor--none of the people I encountered woke up in the morning and thought I am going to question the rights of disabled parents today. It is far more insidious than this and speaks volumes about society and American culture. Disability is often a metaphor for much larger issues like loss of control and disorder that are particularly feared in a hospital setting.
Total strangers do this all the time to my 7 year old son. They make comments on how helpful he must be to me. I'm like... ffs... he's SEVEN. He's the one who needs the help. Who do you think is cooking the mac n cheese around here?
Liz--yes people often comment about how "helpful" my son must be. I have developed 6th sense about how to avoid such comments. I am not always successful which reminds me of my favorite story about my son when he was little. A guy came up to us and after a few quick seconds got to the point. He "praised" my son for "taking care of his crippled Daddy". To this my son replied "You are an ignorant bigot". The look on this man's face was priceless and I was a very proud father.
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