Last Sunday’s New York Times Magazine had an article by Peter Singer entitled “Why We Must Ration Health Care.”  If you don’t know Peter Singer, it’s not his fault.  He is a professor of bioethics at Princeton University who has a hearty appetite for controversy and philosophical engagement.  He is a noted animal rights proponent and, seemingly by design, a villain to the disabilities community.

My first thought upon seeing the article was to recall the passing, on June 4, 2008, of Harriet McBryde Johnson.  Harriet, who died at the age of 50, was an incredible disability and civil rights attorney.  She also wrote articles for the New York Times Magazine where she engaged Singer in ongoing debate on issues of life and death for individuals with disabilities.

In a February 2003 article, Unspeakable Conversations, she addressed Singer’s statement that: "It does not seem quite wise to increase any further draining of limited resources by increasing the number of children with disabilities."   Harriet, who had spinal muscular atrophy, brought the discussion down from the philosophical plane to the personal.  Singer, she pointed out, was saying that Harriet’s parents should have had the option of killing the baby she once was in order to “avoid the suffering that comes with lives like mine and satisfy the reasonable preferences of parents for a different kind of child."

But getting back to this Sunday’s article, I think it’s clear that Peter misses Harriet.  You see, after he describes something called a “quality-adjusted life-year” (QALY) which compares the cost-effectiveness of various medical procedures as part of a process of deciding which medical treatments will be paid for with public money, he says: “Some will object that this discriminates against people with disabilities.”  Could that be Harriet?

He explains that if people feel that they would rather live one year as able-bodied than two years as quadriplegic, then a medical procedure that extends the life of a quad should only have half the value as one that extends the life of an able-bodied person.  Singer agues that even though a quad would not want to give up a year of life, she would want to be “cured,” thereby acknowledging that her life is not as valuable as one that is able-bodied.  He concludes:  “Disability advocates, it seems, are forced to choose between insisting that extending their lives is as important as extending the lives of people without disabilities, and seeking public support for research into a cure for their conditions.”

But alas, Harriet is not here to set Singer right.  She can no longer point out that disabilities and medical conditions are different things.  (The Oregon Health Plan recognized that almost twenty years ago.  Get with it, Peter!)  As a civil rights attorney, Harriet can no longer remind Singer that the law protects minorities from the tyranny of the majority: what “people” may think about the value of minorities does not permit them to devalue their lives.

And I think Harriet knew something about American values: that this is a land where people can strive to improve their condition without penalty.  In 2006, Harriet spoke at the United States Holocaust Memorial Museum.  Her topic was "Deadly Medicine," a disability rights perspective on the Nazi Euthanasia program to exterminate people with disabilities. She reminded us that among the first groups that Hitler slated for elimination were people with disabilities.  Between 1939 and 1941, over 200,000 people with physical and intellectual disabilities were sent to death.

If the American public were polled and a majority said that life as a quadriplegic is not worth living, would Singer be satisfied if the government provided them with no medical treatment?  In that case, would a quad choose the Nazi method over prolonged suffering from untreated medical conditions?  Questions that Harriet McBryde Johnson would relish asking.

Asking questions (and expecting answers) is something that empowered people do.  Last week. David Oaks, Director of MindFreedom International, sent an email asking a simple question:

"Why is Oregon one of few states to provide zero (0) for state-wide voice of
mental health consumers and psychiatric survivors?"

Or, to put it even more simply, "Why Zero?"

His email notes that the 2009 legislature did not make the predicted deep cuts to mental health services. Yet proposals to fund a state-wide consumer/survivor voice within Oregon government were both excluded from the Governor's proposed budget and, due to - consumers were told - tight resources, denied funding by the legislature. 

David is not buying it. 

He contacted Richard Harris, the Interim Assistant Director of Oregon's Addictions and Mental Health Division, to ask: "Why Zero?"  He also requested a reply by 30 July 2009, the one-year anniversary of the passing of "the amazing, outrageous mental health consumer/psychiatric survivor advocate Dave Romprey."

David is also asking others to participate in a "Why Zero?" Campaign by asking Richard ( Richard.harris@state.or.us) the same question:"Why Zero?" 

During the 2009 legislative session, advocates like Beckie Child and Meghan Caughey from Mental Health America of Oregon worked on a bill to achieve a stronger consumer voice.  Senate Bill 378, sponsored by Senator Bill Morrisette, would have created an Office of Consumer Affairs in DHS and an Ombudsman for mental health consumers. The bill received a hearing but died due to lack of funding.  

DRO strongly supported Senate Bill 378. Here is an excerpt from our written testimony:

Nationally, the Substance Abuse and Mental Health Services Administration’s Center for Mental Health Services (CMHS) has established a Consumer Affairs Program within the office of its Director.  CMHS policy: "supports the meaningful participation of mental health consumers/survivors in all aspects of the mental health system including the planning, design, implementation, policy formulation and evaluation of mental health services.”

CMHS policy statements recognize that, for many years, decisions about mental health policies and services were made without any input from people who have mental illnesses or their families. As a result, some policies and programs failed to meet the needs of the people they were intended to serve.  Through strong advocacy, consumer and family organizations have gained a voice in mental health research, legislation, and service delivery, working to overcome stigma preventing discrimination, and promote recovery from mental illness.

It makes sense that the experience of consumers of any service, public or private, should inform its operation.  DRO has a consumer advisory council that is invaluable in setting goals and policies for our program serving individuals with mental disabilities.  DHS (and Oregon) would similarly benefit from a more established consumer voice, and consumer-directed services within all sectors of our mental health system.  SB 368 will further this improvement.

Disability Rights Oregon applauds MindFreedom International's effort, and joins them in asking, "Why Zero?"

~~~

For more information about the "Why Zero?" Campaign, visit:
http://mindfreedom.org/zero.

In an initial interview, Humphreys stated that he first saw James Chasse standing some distance away, rocking back and forth in an exaggerated motion.  Humphreys stated that he considered this a sign of intoxication, and that he did not consider that Chasse might be suffering from a mental illness. Humphreys ruled that possibility out from the get-go, concluding that Mr. Chasse had committed a crime, was committing a crime right now, or was about to do so....

When Chasse walked away, out of sight, Humphreys and his partner went looking for him, found him, did not witness Chasse commit any crime, misdemeanor or infraction, and apparently didn't need to. That's when they made the transition from police officers to thugs with a badge.

The video record shows Humphreys et al strutting around like they had just arrested Osama bin Laden, while James Chasse, who had committed no crime, misdemeanor or infraction, was in the act of dying from his injuries and from medical neglect following this horrific beating.  A quick check of the alleged "crime" scene might have turned up a wet spot, and might have turned up nothing...ah, but the thrill of the chase...the refreshing crack of ribs breaking, a "lesson" soundly delivered...should end that rocking back and forth in public once and for all...a dozen extra knee drops just to drive home the point...this boy's gonna remember this for the rest of his life....

This is a case that will never be forgotten; a case about a person who was loved by many and feared by no one; a person who for years suffered a severe illness in plain sight and threatened no one.

Then one day comes a thrill-seeking thug with a badge....

- Sean Cruz