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."

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