The Right to Life

This was written on March 25th 2005, its actually a piece I wrote for blog critics site, as are one or two of the other things posted the last few days. So some of the things may no longer be current, but they are still relevant, to ALL of us: I’m busy working on other sites, which is why my new posts here have been sparse the last few days.

Not long ago, I read of the ruling on Terri Schiavo and when it wasn’t her decision, she has no living will, it is legalized murder because it’s on the say-so of another human being.

And this seems to run through the whole of life in disability issues. If one cannot be cured, you cannot be used as a success statistic by the doctors, so you are nowhere near top of their priorities, and probably nearer the bottom. If you cannot work, through the disability, (and therefore contribute to society in that way) and have no dependents, you are disposable. There have been cases here in England of even life-saving heart surgery not being given as spending the money, (in a socialized medicine system) could not be justified when people who can be fixed up as good as new, go back to work, and have people who need them and depend on them, can have the money better spent.

It all comes down to figures in the end. Whether it be statistics in success rates, or financially. The elderly who are infirm will often be given preferential treatment over the long-term disabled because they have been contributing up until they retired and often have families.

As a severely disabled person, I’ve also considered recently the value of making perhaps a living will or Advanced directive which is basically the same thing. And that can seem a huge temptation for someone in my shoes. Yet, it also speaks of defeatism, and assuming an eventual outcome of this disease. Yet it’s just as likely for madness to take hold permanently somehwere down the line, and that to me, is far more of a dread than being helpless in the ways these living wills cover.

I just think the value of human life is grossly under-rated in whatever its form. Ask how many parents who have Downs Syndrome children, or an autistic child, if they regret having the child. The answer will invariably be no. Samuel, My Joy Yet, those with downs, autism, or a multitude of other disabilities, are some of the offcasts of society too.

It doesn’t really bother me from a personal perspective, in a big way, but does stir up righteous indignation at how cheap and disposable human life is, whether it’s the unborn or such as the above, and how often the choice and right to life is taken out of the hands of vulnerable people and they have no say in it.

Murderers and rapists are given a chance at life, the unborn, the disabled and the vulnerable, have no rights at all. Quite a sad reflection on the state of the society we live in.

Against the killing of the light–By Ed Smith. Ed Smith is a retired educator and full-time writer. His humour column runs in several papers and magazines and he has had eight books published. He has been quadriplegic since 1998. Ed lives in Springdale, Nfld.

And AGAIN on the same theme, but on the new Clint Eastwood movie.

 

 

Medicine in the Techno-Age

One aspect of medicine that is not spoken of alot, unless one either has first hand knowledge yourself or through a loved one, is deseases that come under the Orphan illness catagory.

Often these illnesses present with a myriad of different often disabling symptoms, changes the life of the person as they previously knew it, and yet upon investigation, no definitive cause or specific desease can be found.

Very often, the person who is ill, is passed from doctor to doctor, all of them mystified, and many of them end up saying "its all in your head" which is soul destroying to the person who is sat there listening to this "expert opinion" desperate for someone to help them medically, afraid of the consequences if they are not helped, and desperate to be believed they are ill, not malingerers, hyperchonidrachs and/or time wasters.

Neurologically, there are many of these illnesses. And I know a fair few people who have these so called "orphan illnesses" and often it can take ten years or more, for them to even get close for a doctor to believe they do actually have a very physical problem, that in the end may very well kill them. There are at least 11 neurological illnesses which cannot be diagnosed until the patient , is on the autopsy table. How can one prove beyond a shadow of a doubt perhaps especially in the earlier stages of the desease that they are actually ill? And when there illness takes decline after decline and they are either not believed they are ill, or the medical community is not sure what is wrong with them, how can they then call a doctor to alleviate their suffering, if they don’t know what they are treating. This kind of scenario when the person is dealing with a life changing, often life threatening illness and yet feels all but abandoned of any real help and/or support, adds a burden that at times can seem unbearable, and life feels both worthless and not worth having. As mankind has many different elements to it. You can’t have physical illness without it not taking its toll on our mental/emotional/spiritual well-being. The same as emotional/mental stress or illness will often induce physical illness.

I had a doctor say to me just over a year ago, that medicine had come a long way, but it still had much further to go, and boy was he right in that. We can send men to the moon and have all kinds of technological advances in the treatment and diagnosis of most major deseases. Yet there is a section of the community, health wise, who have a much harder road to travel partially because the advancements in treatment and diagnosis, makes many doctors suspicous if any illness presents itself and it cannot be pin pointed to by these new methods.

Darwin, the evolutionist, was thought to be a hypercondriach when he was alive, he complained of feeling ill for years and years. Part of his symptoms were palpitations and sweats. At no time during his life did anyone admit he had this illness, or treat him for it. They thought it was in his head or perhaps a form of anxiety. Yet many years after his death, it was proved he was attacked by a parasitic infestation probably picked up when he was in algiers and it would have manifested exactly the symptoms he complained of during his life. King George III of England was thought totally insane, at a time when the insane often suffered abuse, and its only in the last few decades it was discovered he was suffering from Porphyria.

So, while I’m all for new discoveries in medicine and new methods of detection and treatment, I think its important to remember too that no science is perfect. And if man is on the planet another 10,000 years it is likely he will still not understand perfectly the make up and mechanisms in every minute detail of how the human body works, and how many ways it can go wrong, and yet not be detectible by the latest technology of the age.

Doctors by enlarge, do want to help people. As do most others within the medical community. Yet as technology advances, it often removes the human factor out of any given situation. And neither doctors nor there diagnostic techniques are infallible.

Years ago if you went to see your family doctor, you could have as much of his time as you needed, and it would be somewhat like going to see an old friend you were so familar with one another. Now its in and out, and doctors are under pressure to perform, which often means statistically, and the human touch by enlarge seems to be disappearing more and more.

Technology is great, I love it! But in its advancement, we need to remember to not by-pass the fact that human beings need compassion, the human, caring touch that one can’t get if one feels just like a statistic, or a piece of meat or when visiting a doctor its in and out, and you feel a little like one is on a production line. And people don’t need to be so dehumanzied as to have the validity of their illness cast doubt upon, by the findings of a mere piece of machinary. I sometimes wonder at what cost, and how high a price we pay in humanity, for the advancement of technology and science, which often removes real people with real responses and emotions out of the equation, and reduces us all to, a number, rather than the individuals we were created to be.

Disabled or Dead?

Terri Schiavo revisited:

If anyone had asked me, as an epileptic with severe brain dysfunction in earlier life, "If at any point in time you are physically incapacitated, would you want to live as a physically disabled person, or do you want to set it down in writing that you would want to be allowed to die, or even actively helped to die?" my answer would have been resoundingly, "Heck yes. Life is bad enough as it is. Any worse would be unbearable — let me out of here."

We can all make decisions about what we think we would do, what we think would be best for us in a certain given situation where the situation is a hypothesis rather than a reality. Are we so blind as to think that every disabled person who has ever thought they would rather die than be disabled does not now as a disabled person live a happy, fulfilled life in a way they had never imagined possible from the vantage point of being able-bodied?

Doctors need to re-evaluate the disabled community and not let their decisions on when it is the right time to end a person’s life be influenced by the fact that the person is disabled. The disabled community itself should have a say in these matters and the decisions which so affect them. A statistic that cannot be cured, and therefore costs money to keep alive and yet will not be able to contribute in the way someone able to work with no limitations can, is no reason for anyone to make a life-ending decision. Statistics, financial or otherwise, should not devalue a person’s life.

The Hippocratic oath says: Full text

"I tread with care in matters of life and death. If it is given me to save a life, all thanks. But it may also be within my power to take a life; this awesome responsibility must be faced with great humbleness and awareness of my own frailty. Above all, I must not play at God.

I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person’s family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick.

If I do not violate this oath, may I enjoy life and art, respected while I live and remembered with affection thereafter. May I always act so as to preserve the finest traditions of my calling and may I long experience the joy of healing those who seek my help."

"Preserve" is the optimal word here. And "I will NOT play God," which is exactly what is done when hastening someone’s death.

If someone is not terminally ill and will not die within a short amount of time, what gives anyone else the right to decide that that patient has made a decision to die? If a living will exists but was made under very different conditions to the one they now find themselves in, who is to be sure the reality of living as a disabled person rather than the hypothetical scenario it once was still holds the same meaning? We can all imagine scenarios. But we cannot have a real grasp of anything unless or until we experience it first-hand.

If someone had asked me in my 20s what I wanted to do with my life, while perfectly physically able-bodied, the answer would have been to "end it ASAP." If someone asks me now, from the perspective of a chronically ill and severely disabled person, the answer is to not waste another hour that I don’t have to. Go with what I’ve got, and live it all to the glory of God. He will know when my life is no longer worth sustaining.

Terri Schiavo made her statement, which her life-ending decision was based upon, when the scenario to her was hypothetical. She died on the basis of a hypothesis. Is that how any of us should live or die?