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Friday, October 18, 2013

Thinking About Assisted Suicide and What is Heard

I find the debate associated with assisted suicide frustrating. Some days I think only two views exist: those opposed or those in favor of assisted suicide. I am opposed to assisted suicide. I base my opposition to assisted suicide legislation on a detailed understanding of the issues involved. In my estimation certain populations are at risk; in particular the disabled and elderly people. I do not think all the safe guards in the world are adequate. I am not impressed by the reporting required by law in Washington and Oregon. In my opinion what is reported amounts to little more than demographic information. I do not trust lawmakers. The fact is once legalized assisted suicide advocates push to expand existing law. I find advocate groups such as Compassion and Choices slick and misleading. I could go on but the point is there are solid factual reasons to be opposed to assisted suicide legislation.

What is really needed is a national debate on end of life issues. While passion is fine we need to have a sober discussion about why people want to die. I think people with a disability are ideally suited to be prominent figures in this discussion. The reasons for this are glaringly obvious to me: it is commonplace for people with a disability to have their existence, our very humanity, questioned.  Our lives are perceived through a non disabled lens. That is we can never measure up to normal--in this context a non disabled body. This failure empowers typical people, the vast majority in the mainstream, to wonder what our lives are like. The assessment of life with a disability is not positive. In fact about once or twice a year a total stranger will without prompting tell me they would rather be dead than paralyzed. Given the lack of respect associated with disability, when we do speak out and assert our lives are indeed worth living the reaction is not positive. Hence when I read an article in the Guardian by Stella Young, "Disability A Fate Worse than Death, I was not surprised to read multiple negative comments. See:
 Young wrote:

As a disabled person, I'm accustomed to conversations about quality of life and dignity. Specifically, I'm accustomed to assuring people that my life is worth living. I'm short statured, a wheelchair user, and I frequently have bone fractures. All the visual cues that make me "the other" are front and centre. People make all sorts of assumptions about the quality of my life and my levels of independence. They're almost always wrong.I've lost count of the number of times I've been told, "I just don't think I could live like you," or "I wouldn't have the courage in your situation," or, my favourite one to overhear (and I've overheard it more than once), "You'd just bloody top yourself, wouldn't you?".

Young goes on to note that the voice of people with a disability is rarely heard. In the rare instance a person such as Young is able to publish an article in a newspaper like the Guardian the response is emotional and often nasty.  The below comments are about what I would expect when a person such as Young states her opposition to assisted suicide.   

Seems like Stella believe her disability gives her some authority to advocate for others to endure pain and suffering just because she herself found it character building.

Why on earth does the writer make the assumption that doctors would automatically have control over the person? Why does she assume that rational people who decide for themselves how they want to live suddenly can no longer decide for themselves how they want to die?

I think the writer has massively misinterpreted euthanasia. It's not some dr going around saying 'your life sucks. We are going to terminate you.'

This is a very naive article that skips merrily over the pain and comfort people experience or know they will at some point in the future and look to assisted dying. 

Of course, open discussion on euthanasia is needed, and all voices must be heard but should we really give more weight to fear and paranoia than reasoned arguments?

I find it infuriating that disabled people opposed to euthanasia get to tell other disabled people how they must feel about their conditions, lives and deaths, but no one is allowed to tell them how to feel about them.

I do not consider my body and existence to be more or less valuable than any other human being. I have no desire to impose my beliefs on others. In opposing assisted suicide legislation I am asserting my right to live but I am far less concerned with my life than I am with the life of others--disabled others and all those others whose life is not valued. Young went on to note that: 

social attitudes towards disabled people come from a medical profession that takes a deficit view of disability. This is my major concern with legalising assisted death; that it will give doctors more control over our lives. As a disabled person who has had a lot to do with the medical profession, I can tell you that this is the space in which I've experienced some of the very worst disability prejudice and discrimination. Doctors might know about our biology, but it doesn't mean they know about our lives.

I would go further than Young. I think we people with a disability are feared. We are the one and only minority that can be joined via illness or accident. Our atypical bodies also symbolically represent the limits of medical science. Please do not talk to me about joint decision making strategies between physician and patients. Do not talk to me about informed consent. Do not talk to me about patient centered care. These buzz words are cultural ideals we aspire to reach. I am not suggesting we do away with these concepts. They should be valued. But my reality, my experiences when I try to access health care is radically different. Young quotes Marilyn Golden, a long time opponent of assisted suicide who perceptively observed: "we are asking the wrong questions when it comes to assisted death: We have to ask, do people with disabilities have true choice and self determination, in terms of living outside of nursing homes? In terms of housing that is truly affordable and accessible? In terms of the kind of services that really allow them to lead meaningful lives? In many cases, no."

These are the sort of questions we should be discussing. Why do people, all people, want to die? What drives a person to think death is preferable to living? Pain is not the primary variable. People choose to die because they fear losing their independence and autonomy. And here the link between end of life issues and disability is glaringly obvious to me. When I see a person with a disability I think of all the things a person can do. The same can be said for any person approaching the end of life. I think what can this person do? How can their life even with death impending be enhanced? This is not typically how others with no exposure to disability or end of life issues think. Instead we isolate the disabled and elderly--a historic pattern we have yet to break. A desire to die is a reasonable reaction to a future to spent in a nursing home. I suggest if we had community based care for elderly people life would be substantially different. Life would have value. The same can be said for those that live with a disability. Imagine if we placed value in accessible housing, transportation and lowering the unemployment rate. I bet if we did this, and I mean if we had a nationwide campaign, the lives of people with a disability would be perceived as having value.  Yes, I have a dream of a utopian society. Do not blame me. I was reading Thorstein Veblen last night who was weak on policy ideas but was a great social critic.  

Wednesday, October 16, 2013

Syracuse Redeemed!

I was getting gas yesterday in an industrial like area of Syracuse. Thanks to waze, my favorite app on my cell phone, I found the cheapest gas station in town. As I was getting out of the car I noticed a man filling up a large truck and thought thank goodness I am not paying that bill. We made eye contact and exchanged nods. As I got in my wheelchair the man said "Wow, I never saw anyone get in and out of a car with a wheelchair like your". My face turned to stone--as it usually does when such a statement is directed my way. The truck driver instantly noted the change in my facial expression and said "I am sorry I bet people comment on your wheelchair every time you get gas." I replied "pretty much". He laughed and said "people ask me how much it costs to fill the truck with gas pretty much every time". He drew out "pretty much" and then we both laughed. 313 million people live in the USA. I encountered one man who had social skills and understood the meaning of his words.  I wonder how many others get it. Perhaps one day I should start a tally.

Monday, October 14, 2013

Respect Often Absent in Hospital ER

Not Always Working is a mixed bag. Some posts are interesting but many are not. I visit the site once in a while but am not a regular reader. Here is a link: I found this post of interest because the exchange below likely happens in every ER in the country. Two friends go to an ER. The person that needed medical attention had Cerebral Palsy. She had an allergic reaction and was not seriously ill. Her speech could be understood. The other person was her friend who went to the ER to provide moral support.  The following conversation took place:

Nurse: “And how old is she?”

My Friend: “20.”
(Instead of responding to my friend, the nurse looks at me.)
Nurse: “Is that correct?”
Me: “I would assume. She can speak for herself. I’m only here as a friend.”
Nurse. “And for how long have you had these symptoms?”
My Friend: “I noticed them this morning, but they’ve gotten very bad.”
(Again, the nurse looks at me instead of my friend; I say nothing. She continues doing this for several moments, asking questions and then looking at me, until my friend finally snaps.)
My Friend: “You talk to me, not her! She’s my friend; she doesn’t know anything about my medical stuff.”
(The nurse stands up and storms away. I follow, more than a little angry on my friend’s behalf.)
Nurse: *to me* “You may think it’s nice to let her pretend to be a real person, but some of us are trying to run a hospital.”
Me: “Excuse me?! She’s in a wheelchair; she’s not stupid! She IS a real person.”
Nurse: “Well if you want to pretend that’s true, that’s on you.”
(I am struck completely silent in rage and shock. A doctor, who I haven’t seen until he SLAMS paperwork down on the desk, interjects.)
Doctor: “Nurse. Supervisor. Now.”

The above has happened to me countless times since I was paralyzed. Rather than assume competence health care workers in the ER assume incompetence. The only way I would go to an ER is  if I am dying--literally critically ill with death a distinct possibility. Pretty much every other paralyzed person I know feels the same way. We avoid the ER because we know our existence is not valued. We are not fully human. It is assumed we have some wort of fatal flaw. I have been disrespected by triage nurse and physicians. I have been disrespected by ancillary staff. I have been disrespected by medical technicians. Virtually every ER I have been to has been hostile to my presence. I do not take others to the ER. If I did they too would be disrespected. What exactly have health care workers done? Here are some examples.
1. My son needed stitches. His hand was wrapped in a bloody hand towel. The triage nurse asks my son who is the patient. She looks to him for the answer. Later an administrator asks me if I have legal documentation to prove I am the father. 
2. I cannot a catheter in, a potentially serious problem. I am on a stretcher legs spread and the resident starts to tell me in great detail about exactly why he would rather be dead than suffer a spinal cord injury. He was very clear a spinal cord injury was a fate worse than death. 
3. I burned my leg with hot water. It is a serious burn. The physician needs to put a dressing on. Before doing so he grills me about paralysis. The line of questioning is demeaning. I am asked how I get dressed, can I have sex, where do I live, do I have a personal care attendant, can I drive, why am I alone, etc. The line of questioning is morbid and not relevant at all. 
People wonder why accessing health care is a problem for people with a disability. I suggest a quick trip to the local ER will provide ample evidence of gross social inequities not to mention a physically inaccessible environment. 

Sunday, October 13, 2013

Idiocy Exists Even in Syracuse

I had my first negative social interaction here in Syracuse.  It pretty much ruined my Sunday routine. I leave my home early in the morning and drive to Syracuse. I get in at lunch time and my first stop is Wegmans. My brother John told me this is one of the best super market chains in the country. He is right, Wegmans is awesome. Great prices, excellent food, wonderful produce, and spotlessly clean. Believe it or not, I look forward to going to Wegmans. So there I am entering the store thinking food when a short heavy woman accosts me. "Hey, you got out of your car on the wrong side. Why are you out by yourself?" I put my head down and move as quickly as possible away from this woman. This effort fails as the store is crowded. "I am speaking to you. Where is your care taker? You cannot shop by yourself. You need to be care for and supervised". I am desperate at this point to get away. I quietly but firmly say "Please leave me alone. I use a deep tone of voice that I hope has a level of animosity.  Not a single person shopping or going by is paying attention. Shit, what can I do? If I raise my voice and say what I want I will look like a jerk. No one raises their voice when confronted with a  heavy woman about 60 years old. But from past experience I know I have two choices: a direct confrontation where I must assert authority or figure out an escape route. As these options are going through my head I realize this woman thinks I have somehow escaped or snuck out of the local group home. Yes this is far fetched. I mean how many people in a group home drive an Audi and get out of their car on the wrong side. Regardless of her background, she clearly has a very strong opinion people like me, a person that uses a wheelchair, needs a "care taker".  I figure I am screwed but am suddenly saved from having to establish my personhood: a sea of shopping carts part. I scramble through the narrowest of spaces, two mothers looks at me in mild annoyance, and I make a sharp turn into the crowded produce section. I am free. The woman cannot follow me. She is as wide as I am in my wheelchair and I am much faster.

Driving to the motel I thought what a unique life I lead. In many ways I am grateful. Living with a disability is the perfect cure for a big ego. Every time I think I am too good or too smart I have an experience such as the one I just described. Perhaps we should have Tea Party types and various elected politicians use a wheelchair. Afterall, they are playing a dangerous game of political suicide from which they are immune from harm. Perhaps having their most basic rights questioned, simply to go shopping, might put things in perspective. Hey, it works for me.