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.

Saturday, May 12, 2007

And the Award Goes to... Kevorkian?

Note: This opinion first appeared in the State Journal-Register on May, 7, 2000 as a guest editorial. The struggle for parity in healthcare continues. Consider what is happening at Children's Hospital of Austin where 17-month-old Emilio Gonzales, who is on a respirator. The establishment say its medical efforts are futile and the child is suffering. It invoked a state law that allows hospitals to end life-sustaining treatment over the parents desire to keep him on the respirator.

Excuse me? Even the academics at the Gleitsman Foundation and Harvard University should be able to call this one… it’s a no-brainer, a walk in the park, a proverbial piece of cake. Unless, of course, being a serial killer is your idea of “activism”.

The Gleitsman Foundation Activist Award is dedicated to the memory of Michael Schwerner, a passionate civil rights activist who was kidnapped and murdered in Mississippi (along with James Chaney and Andrew Goodman) in 1964 Each year the foundation honors people who challenge inequity and injustice and promote positive solutions for social change at the grassroots level.

This year, the award goes to… Jack Kevorkian? It leaves me scratching my head in disbelief. If we’re going to honor Jack Kevorkian as a citizen activist, then I have a few nominations for next year’s list: Timothy McVey, former Alabama Governor George Wallace, the entire South Carolina legislature and, let’s not forget central Illinois’ citizen activist, Matthew Hale.

Stephen Taylor, Ph.D., Director of the center on Human Policy at Syracuse University, wrote, “It is true that Kevorkian is a citizen activist,’ and it is undoubtedly true that he is strongly committed to his cause… the same might be said of the members of the Ku Klux Klan and Aryan Nation. (Kevorkian’s selection is) a deep affront to all persons with disabilities and a dishonor to other recipients of this award.”

Previous winners include people like Geraldine Jensen, founder of the Association for Children for the Enforcement of Support (ACES), and Tanya Tull, founder of Beyond Shelter, a Los Angeles organization to fighting homelessness, Nobel Peace Prize winner Nelson Mandela and Nobel Peace Prize nominee Wei Jingsheng are past winners of the Gleitsman International Activist Award. How Kevorkian made the list, baffles me.

People with disabilities have been and are fighting to get even their most basic civil rights. I have been active in that fight for more than 20 years. Even basic rights, like life, are constantly in jeopardy. Not because of disability, but because our medical community and society devalues the lives we lead. Any intervention by the medical community to help someone with a disability take a life threatens the pursuit of life, certainly liberty and, of course, happiness.

The reason is simple. If the medical community cannot cure us, they perceive us as less than whole. We’re not fully human to the medical establishment. They do not offer us the same services and supports that our non-disabled brothers and sisters receive.

A depressed person with a disability is less likely to get a referral for counseling and more likely to get directed to the Kevorkians of this world. “After all,” many say, “what do they have to live for anyway?”

Don’t misunderstand me. I’m not opposed to a death with dignity. If someone wants to take his/her life, that is not for me to decide. I hope that the decision is well thought-out and that they are not looking for a permanent solution to a temporary problem. But, it’s not my call. However, in medicine, a disability defines you, rather than being one small facet of a multidimensional human being.

If we had national health care for all citizens, if cost-containment weren’t health care's most popular buzz-words, if people with disabilities were valued members of the community, I might feel differently. Until then, it’s wrong: it’s just plain wrong.

Not Dead Yet, an advocacy group opposed to physician-assisted suicide, has a resolution to help groups organizing against bills to legalize it. In part, it reads: No bill to legalize physician-assisted suicide applies to all citizens equally, but singles out individuals based on their health status… The legalization of physician-assisted suicide gives physicians the power to decide who will be given suicide prevention and who will receive suicide assistance and is, therefore, not based on individual choice and autonomy.

Kevorkian’s selection as this year’s Gleitsman Citizen Activist Aware is one more reminder of how callous this society is toward equality for people with disabilities. Consider these acts of activism:

  • Public policy and funds go to support institutions rather than community living options, a less expensive way of providing services.
  • The Illinois Council on Long Term Care PAC gave nearly $80,000 to state candidates in 1998. Nationally, 2000 nursing home groups gave nearly 41.3 million to candidates for state office in 1998.
  • On the backs of the less powerful, unions fight to keeping institutions open to maintain member’s job security.
  • Schools still segregate and/or exclude childre3n with disabilities, despite a 30 year federal law prohibiting it because it’s an easier way to provide educational services.
  • People still avert their eyes to they don’t have to greet someone with a disability as they pass on the street.

Activism exists in many forms—some of them are very destructive, mean-spirited and demeaning. Let’s resolve only to reward activism that works toward the unity, dignity and equality of all our citizens. You’d think the intellectuals at the Gleitsman Foundation and Harvard University would have already figured out that no-brainer.

We’re Not Good Judges of What’s Hurtful to Others

Note: This opinion was originally published April 28, 2001 as a guest editorial in the State-Journal Register, my hometown newspaper. It took another six years for the University of Illinois to ban the Chief. The reasoning they used...University was losing too much money because of NCAA penalties related to using racist mascots. See Chris Britt,'s political cartoon at the end of this article to see how the paper responded when they finally got rid of the Chief.

We just don’t get it. By “we” I mean Americans of European ancestry. We have a hard time understanding what all the fuss is about. We believe Chief Illiniwek is really cool. We say he is revered. We say he’s not offensive at all, but a good symbol of Native Americans.

I used to live down the street from Webber Borchers, the first Chief Illiniwek and former state assemblyman. The colorful old cuss used to revel us with stories about the character he created in 1929 when he was a history major at the University of Illinois.

He would tell how he traveled the country, raising money for an “authentic” costume. Traveling to South Dakota, he arranged to have Native American women make the costume. Borchers first wore the costume to lead the band down Fifth Avenue in New York before the Army-Illinois game in 1930. I believe that costume, or one much like it, is still used today.

He devised the first dance … and loved telling how he developed it. Ahhhh …how that man revered the Chief. He saw what he was doing as a way to build school spirit, and a way to start a school tradition.

Several years ago, I was in the stadium at the University of Illinois the day many former Chief Illiniweks, including Borchers, took the field at halftime to do their own unique, and to their way of thinking, “authentic” dance.

I am sure that he and the other Chief Illiniweks that followed were sincerely trying to pay homage to the “noble savage.” But, the depth of their sincerity, or the depth of ours, should not be a factor in the decision to retire the Chief. If in the light of a new day, an old tradition offends, then it’s time to drop the tradition.

In minstrels shows white entertainers put on black face and satirized slaves in the South and ex-slaves in the North. Blackface entertainers first appeared in New YorkEngland in the 1830s and became wildly popular after the Civil War.

Thomas Dartmouth Rice was one to first appear in blackface. He developed Ethiopian Opera – dramatic farces in blackface—like the “Long Island Juba” and “the Black Cupid”. His “Jim Crow” act included a shuffling dance and song. It was very popular, and became the first international hit of American popular music.

The reviews don’t include what people in Harlem thought of his act.

I’m sure that in his own way Rice, too, was paying respect. Imitation, they say, is the highest form of flattery. However, nearly all of us would agree that the minstrel show “coon” is a racist travesty. Writing about it, just now, made me cringe. It’s such a no-brainer today.

But, it took the people being caricatured to tell us (white folk) that it demeaned them and their very rich culture. And they had to say it repeatedly before we even began to understand. Now, on the other side of the struggle, it’s a fairly easy call. We listened and learned and most of us understood.

There are numerous examples of this characterizing culture other than our own in white history. Asians, Jews, Latinos, Arabs and others have, and sometimes still feel, the sting of white stereotyping and mimicry.

Our track record on sensitivity to cultures other than our own is dismal and oppressive. Perhaps we should admit something to ourselves. That is, if we’re part of the dominant culture, we are not good judges about what is and isn’t offensive to another’s culture.

Perhaps we should listen, and even if we don’t understand, accept what the minority culture has to say about our portrayal of them. Time will probably prove them right.

It’s time to let Chief Illiniwek go – even if some of us still don’t get it.


Chris Britt's Political Cartoon about the removal of Chief Illiniwek mascott.
It appeared in the State-Journal Register Feb 8, 2007.