Uh Oh! That Death and Disability Stuff Again....

There has always been one idea that I have held tight to when it comes to this blog...I have always sworn that I would never hesitate to write about stuff that I knew people were thinking about but wouldn't dare say out loud to anyone, whether it be out of fear or out of a desire to be politically correct. It is the glorious reality of blog land that if you don't like what I say you can just delete me!! and I you...and that's that. It's very freeing.

And so, the very touchy subject of life and death in disability land will make its appearance here once again...like it or not, agree with me or not. But as you know, it's never quite that simple..is it?

Somewhere deep in our collective human psyche, it appears to me that our society is currently attempting to come to terms with the whole life/death thing and how it relates to disability. I can openly admit that this is of tremendous interest to me on many levels and that I remain fundamentally confused at what might be termed right or wrong about the whole thing.

I am, without question, of the belief that human life is of value intrinsically...it is not more or less valuable because of what one brings to the world financially, whether it be considered boon or bane to society as a whole. Life is life and is to be celebrated and honoured for that simple fact. As such, the disabled are to be considered equal expressions of life and are therefore equally deserving of love, respect, care and inclusion in and/or accommodation by society.

Along the same lines, then, I can say that I find the whole "suicide on demand" movement to be deeply distressing and representative of some seriously flawed thinking. It plays on humanity's deep fear of pain and suffering. It is also a very cowardly and overly simplistic approach to the complexities of life on the earth plane. Feeling sad, uncomfortable, sick, tired of it all? Just kill yourself...it's your right to do so! And there are some really kind people out there who will fight for your right to do so and even set up "clinics" that will help you do it all nice and clean and fast and easy! Yippee! But don't ask for some free or affordable psychological counselling, or some decent hospice care, or good jobs for the disabled, or access to pain medications to keep you comfortable until you die, or get social programs to eliminate poverty, or proper housing for the mentally and physically challenged or more education dollars to give people a leg up in life or......cripes, just go kill yourself already, would'ya?

So you're thinking, "so far, so good, the chick hasn't said anything really controversial yet..." Well, I'm just in the frying pan folks; here comes the fire.

Somewhere along the line, the big medical machine decided to shift away from "health" and "healing" in the truest and deepest sense of those words and move into "avoid death at all costs". In short order this lead to the types of technologies that have allowed physical life to be prolonged almost indefinitely. I don't think I need to detail them here; just take a minute and think about the various machines and drugs that are currently in use that keep folks living. Take into consideration that these technologies are used at both ends and everywhere in between the life spectrum: 21 week old fetuses can be saved, coma patients and very sick old folks kept alive for years, severely disabled people held together by plastic and twist ties.

What do you think of all that? What do you REALLY think?

Is it or is it not OK to talk about "quality of life"?

Do you smell the flesh burning as I jump into the fire...

I know of some "micro preemies", as they are called when they are born exceedingly early. They will be on some sort of mechanical assistance for the rest of their lives and at risk of dying at the drop of a hat for all of their lives. How long is long enough with a coma? How old is old enough to pass into the next life? How damaged a body must there be before someone says, "Stop...let it go now."

Is there a point where saving a life just because you can is just plain a bad idea? Is death so to be avoided that life, no matter how minimal, must be maintained at all costs? Isn't death a part of life?

I know of a guy who was in a motorcycle accident that tore his brain out of his skull and split it into two. They shoved his brain back in, and screwed his skull together. He is, currently, alive. Doesn't know anything, anyone, can't do anything...but he is alive and under full care by his wife and insurance company. The next person is a little 3 year old who asphyxiated...he was gone for 10 minutes and they still revived him. He is now locked in, he can move his eyes, he has a trach, j-tube, wheelchair, full spinal fusion, very little cognitive ability, a cabinet full of meds...

Consider, even, my own daughter. If it weren't for the g-tube, she would dehydrate and starve to death. If it weren't for the shunt, her head would explode. They told us she was brain dead, but in the 24 hours post trauma, she started moving and reacting on her own...so they pulled out all the stops and "saved" her. She is my shining star, for sure. She has taught me more than anything in the universe ever could, for sure. Her life is very valuable...for sure! But she suffers from almost constant pain that drugs can only mask. If I put her on painkillers and muscle relaxants she goes semi-comatose and chokes...almost to death...more than once a day. So we manage her with other stuff to the best of our abilities. Can I tell you, I wouldn't wish this on anyone, least of all my daughter. Now, I'm not going to kill her off...that's wrong. But maybe, I wouldn't have let them go hog wild saving her had I known what her life was going to be like. Maybe...

I don't know. That's what I'm saying. I don't know. I don't know that life at all costs is better than simple death. I think that such thinking is out of balance. I can't imagine, however, where one would draw the line with such an idea. Whom do you save, whom do you let go of...there was a time when the decision was simple because it was not possible to save some people from death. It was an acceptable part of life. It doesn't seem to be anymore...because of the technology. It's quite a conundrum.

So I remain in the land of the undecided. The deepest part of me still thinks things are out of balance and that there is room for death somewhere in this equation...and that it's OK. But I just don't know for sure....