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.