Self-Organizing Man

I spend a significant amount of my time thinking about the culture of the medical industry in this country and how the bioethics industry, pharmaceutical companies, healthcare insurance companies, public policy, public opinion and the media intersect(s).

Today I visited one of my favorite websites,  Not Dead Yet.  Diane Coleman, Founder and President of Not Dead Yet, gave testimony "Before the Subcommittee on Criminal Justice, Drug Policy and Human Resources Of the Committee on Government Reform Of the U.S. House of Representatives; Oversight Hearing on "Federal Health Programs and Those Who Cannot Care for Themselves: What Are Their Rights, And Our Responsibilities?"

She speaks eloquently about how the so-called right to die with dignity movement frames people living with disabilities.  In addition to chastizing bioethicists for working diligently to kill Terry Schiavo rather than use their combined efforts to force healtcare companies to pay for medical needs, Coleman brings attention to a reality that will, I believe, fundamentally change how we conceptualize the so-called "right to die" and disability in general:

I recently read a journal article about the problems with advanced directives.  A consistent finding in several funded studies is that people change their minds about what treatments they want, and what level of disability they will accept, as they move through the experience of having increasing disabilities.  The disability community has a response to that, to use a popular phrase, "well, DUH."

Watch all of us who clamored for Terry’s "right to die with dignity" slowly begin to reassess the "horrible" reality of being disabled when we begin living with them too.

Coleman continues by addressing the huge issue of caretaker projection onto people with disabilities. 

And you may have seen reports of a new Alzheimer’s study last year.  It confirmed previous studies that caregivers have a lower opinion of their relative’s quality of life with Alzheimer’s than the persons themselves have, and found an explanation for the discrepancy.  It seems that the caregivers project their own feelings of the burden of care-giving onto the person they care for.  Once again, the disability community response is "well, DUH."  And these are the very caregivers who make life-ending decisions.

I believe we can more broadly define caretaking to include all of us TABs [temporarily abled bodied] folks.  Since we feel sorry for people with disabilities we cast ourselves in the role of caretaker tinged with pity; not caretaking as a matter-of-fact orientation to human interdependence.

We believe the myth of the perfect body, then reject bodies with impairments.  And we have institutionalized this projection in our ethics and practices.

It appears that a certain line of thought in bioethics has pretty much taken over the policy-making work.  This line of thought involves a lifeboat approach, deciding who gets thrown out.

….The Kentucky Supreme Court ruled in 2004 that a public guardian may deprive life sustaining treatment from a man labeled mentally retarded, despite the financial conflict of interest for a state guardian of a ward on Medicaid.

In the end money still forms the bottom line. 

Here’s how I’m beginning to look at things. The far right wants to kill us slowly and painfully by cutting the things we need to live, health care, public housing and transportation, etc. The far left wants to kill us quickly and call it compassion, while also saving money for others perhaps deemed more worthy.

How much money will become too much when each of us reading this post as the temporary nature of our so-called abilities comes to an end?  Where will we draw the line between bodies, pity, money and interdependence?