Friday, May 18, 2007

Justifying the Unimaginable

Note: This article appeared in the Coalition of Citizens with Disabilities in Illinois's newsletter, The Catlyst, June, 2007.

The term “Medical Ethics” refers to a relatively new field of study that examines values as it applies to medical care.

Hospitals ask medical ethicists to determine who deserves to live and who dies. The name may be even more oxymoronic than “military intelligence”, considering some of their recent decisions. Their "moral compass" leads them to say a life with disability is worth living. What else can you believe when they promote euthanasia and infanticide... it is bigotry at its core.

Deadly Medicine

In 1999, members of the Institutional Ethics Committee at Baylor University helped develop a Futile Care Law. Their actions have caused the death of many people with disabilities. Today in Texas, eighteen month old Emilio Gonzales is about to have his plug pulled. The medical establishment is going to end his life. Why? Emilio will never be “normal”. He will breathe with the aid of a respirator. Who decides if Emilio’s life is has value?

In 2004, at Seattle Children’s Hospital, nine year old Ashley X had surgery to remove her breast buds and uterus to prevent her from maturing sexually ensuring that she will stay small so her parents can have an easier time caring for her. Since the story became public recently and the tragedy of this surgery has seen the light of day, the hospital now agrees to include a disability rights advocate as a permanent member of the ethics committee.

Let us get this straight. The ethics committee did not have a disability rights advocate representative? No guardian ad litem to represent Ashley’s rights? Thanks to what they did to Ashley X the hospital will now require court orders in advance of any future sterilizations or growth attenuation procedures on disabled children.

Eugenics, the study to improve the human race's genetic structure is a haven for bigots and racists. As of May 2007, The American College of Obstetricians and Gynecologists now recommends a new screening method for every pregnant woman, regardless of age, to test for Down syndrome and other genetic disabilities. They say it will “give mothers-to-be peace of mind without going through the ordeal of amniocentesis.” It is a new tool will weed out a fetus with flaws.

Peter Singer, ethicist of Princeton University, wrote a book titled,” Should the Baby Live: the Problem of Handicapped Infants". [Emphasis added.] It is a title to charm every believer in “pure blooded” genetics.

Our health care system is based on a profit for insurance companies, hospitals, drug companies, nursing homes, etc. The cost for caring for us gets in the way of their vacation homes, Mercedes-Benz and art collections; we cost too much, and we must go. If you look at the rationed medical care we now receive, it’s hard to come to any other conclusion.

All of this is happening under the watchful eye of the medical ethicists.

The Ethicists Role

There are supposed to be six values that apply to medical ethics. They are:

  • Beneficence - acting in the best interest of the patient
  • Non-malfeasance - "first, do no harm"
  • Autonomy - the right to refuse or choose treatment
  • Justice - who gets what treatment
  • Dignity - the patient and health care providers have the right to dignity
  • Truthfulness and honesty - informed consent.

Measuring the acts listed above to these six values, it is easy to see that they failed people with disabilities miserably.

Rather than coming to conclusions about a person’s futility, or potential weight, or genetic makeup, ethicists need to turn around and indict the medical industry that ignores nearly every value that applies to medical ethics.

The problem is not Emilio. The problem is the medical establishment and bureaucrats who dehumanize, ostracize, and criminalize his disability. Rather than fighting the establishment, the ethicists passed a futility law.

Ashley did not need the surgery to inhibit her growth. She needs community supports, education, equipment, advocates, and to be treated as someone with rights. Her parents need respite, training, physical and emotional support. They need role models. Instead, the ethicists allowed a little girl to be mutilated.

Instead of talking about tests that point toward the development of a master race, ethicists should be talking about how valuable people with downs syndrome are to society… And that they can be actors, workers, lovers and friends. They should publish and hold symposiums about the value of every human being.

They should attack Peter Singer, Jack Kevorkian and other disability bigots. While those men can hold their corrupt and rancid ideas, the ethicists should shout them down at every turn.

Rather than condoning murdering and maiming children they should be actively involved in changing a health care system that discriminates against people, especially children. They need to fight to get the profit motive (which corrupts nearly every health care decision), out of the health care equation.

Power Concedes Nothing without a Fight

Repugnant beliefs and misperceptions about life with disability abound. People with disabilities have been shoved aside, hidden away, run over and pissed on. What we need now is for all of us to be more than a little pissed off.

Does your local hospital have an ethics committee? Who’s on it? Are there any advocates for people with disabilities?

Work with your friends to find these answers. CCDI, your local center for independent living and Not Dead Yet, are three organizations you can work with you to address these issues.

There are millions of us living with disabilities. We have to protect the most vulnerable among us; we must defend our lives.

Note: I'm sad to report, Emilio Gonzales died May 27th, 2007.

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