Thursday, June 18, 2009

Defending my life

I hate conversations, like I had yesterday, where I find myself defending my life as a person with quadriplegia. They usually include questions about how I "can stand" being unable to do so much, implying that what I can't do is what my life is comprised of.

And then this morning I was reading Bad Cripple, where Bill wrote about a conversation he had with a nurse about how decisions are made to end the lives of those with high spinal cord injuries, i.e. quadriplegics.

This is a bunch of nonsense. And, worse yet, these societal notions that some lives are not worth living still affect our health care, education and access to living in the community. As long as people with disabilities are classified into separate categories and deemed as having lives worth living - or not, depending on how disabled we are, we will continue to perpetuate the circular logic that such lives present no opportunity for quality of life.

Imagination is a cruel barometer in determining the fate of someone's life. Not being able to walk is something most people "can't imagine", they say. Having people feed or dress you must be mortifying, they add. And what about those bladder issues? Oh please. Let's grow up.

One of the reasons I played quad wheelchair tennis for years was because I wanted to maximize every bit of function I have. Make no mistake about the fact that most people work toward getting improvements in function and independence, if they survive the injury. I've seen so many people do better than doctors predict and do more than they are "supposed to do". In cases where the level stays the same, people adapt.

No one can convince me that those whose lives are ended out of the fear of others are better off not living. Using an able bodied standard to measure quality of life is ableism, plain and simple. It is rampant in a society that touts physical perfection and independence to a fault.

We need to take a good hard look at our core beliefs about the value and dignity of human life. I am tired of defending my life to others. I no longer list what I can do as if I have to prove that I have value. My life would have value even if I couldn't move anything but my nose - or even that. And don't think I'd necessarily learn to bowl with my nose either. Those days are over too.

I might, however, sneeze at anyone who said "If I were you, I'd kill myself."


william Peace said...

You will not get an argument from me that many of the assumptions people make about disability in general and life as a quad are nonsense. However, antiquated notions abound and are shared by MDs, nurses, PT, OT, and many others in the medical field. My real fear, based on constant negative social interaction, is that value judgments are being made where they have no place. Thus I wonder if my experience so long ago is out of the norm today. Do doctors under the guise of compassion paint a bleak portrait of life post SCI and encourage people to die? I suspect this takes place more often than I want to accept.

Wheelie Catholic said...

You write:
::My real fear, based on constant negative social interaction, is that value judgments are being made where they have no place. Thus I wonder if my experience so long ago is out of the norm today::

I don't think it is out of the norm today. I think a lot of these stories either go untold or because these value judgments are so pervasive, unrecognized - when lives are cut off, no one sees what could have been.

Thanks, Bill , for writing about this.

Terri said...

It is horrifying that this occurs. It occurs with other diagnoses as well.

And it is horrifying that these thoughts are so much the norm that people aren't even embarrassed to say those things to you.

I had a physician look at my daughter and say "this should never have been allowed to happen" (and nothing had 'happened'--he was referring to her being alive.)

I went to work that night and couldn't even work I was so upset. My boss gave me an answer that I have used far too many times since with good effect: "Whatever would make you say something like that to me??"

AARGH! (ps: the captcha on this says youlead--thought that was appropriate!)

william Peace said...

Yikes, you gave me the wrong answer. Surely we humans have come farther than this. I know plenty of people are who are high level quads and have great lives. I was hoping you would have felt my thinking was antiquated and that life with a SCI is portrayed in a positive fashion. I guess I remain naive all these years later.

Wheelie Catholic said...

Terri- That is a great answer!

Bill - And the good news is that more of us are around to spread positive portrayals of life with an SCI, quad or para. Those portrayals, hopefully, will work to change attitudes.