Social Pressure and the Organ Harvesting via a Dead Donor Rule

The issue of organ donation is a particularly sensitive and complex one, as Elysa R. Koppelman (2003) shows in her carefully written examination of current and possible future "rules" for determining when it is—and when it is not—permissible to "harvest" organs for transplantation. She makes the point that the "dead donor" rule asks the wrong question and ought to be replaced by other formulations intended to balance utilitarian and deontologic perspectives.

However, from a disability studies perspective, Koppelman's analysis has failed to consider the massive weight of social pressure and societal rules and norms that might be oppressive when considering organ donation at the end of life for people who either experience disabilities or are regarded as doing so. Specifically, while wishing to promote autonomy and appropriate decision making, she leaves the door open for healthcare providers desperate for organs to use social consensus to pressure people into agreeing to what might amount to euthanasia, either for themselves or for the relatives for whom they are surrogates.

What is most important, from this perspective, is to understand that the concerns of people with disabilities have generally been ignored in this area, at least as they perceive the situation (MCIL 1997; A world without bodies 2002; Breathing lessons 1996; Johnson 1994). In fact, disabled people are vocal and passionate about the objectification and reification of their bodies as representing them, for better or worse. People with disabilities believe that there is a great risk of being seen as living reservoirs of transplantable tissues, due to the belief common among many physicians and others that disability is frequently associated with a poor quality of life (Gill 2000).

Additionally, disabled people often report that they are routinely viewed as incompetent by social workers and healthcare providers, among others. They report frequently feeling pressured to (for instance) sign do-not- resuscitate orders when admitted to hospitals for needed care, or they report feeling pressured by families to simply die and get out of the way.

This is what Koppelman's article misses: that autonomy or even personal history is nothing when influenced by existing social attitudes that define disability (in particular) as always pathological, that see living with a disabling condition as never "normal." Social pressures are subtly and perhaps not so subtly brought to bear. Assisted suicide is legal in a few places (e.g., Oregon and the Netherlands) and widely accepted by, among others, the Hemlock Society. Reasons often given for permitting assisted suicide presume that a person is in such pain that death would be a mercy. Sometimes people who are contemplating assisted suicide mention the lack of "dignity" that, in their view, attends their disabling condition because they might no longer be able to care for themselves without help. Too often stressed is the physical and emotional isolation or care needs experienced by the disabled person; too little stressed is the lack of support for persons with a disabilities to live in the community with appropriate supports and the right of the individual with disabilities to live without fear that he or she may be easily terminated.

Koppelman does not consider any of these social issues or the massive weight of tradition, culture, and current belief on the decisional capacities of people with disabilities. She does not consider disability studies perspectives at all, in fact. She either does not know about the field and its applications to bioethics or she feels it is unimportant in this context. I hope that readers will begin to think about how the disability studies perspective can contribute to aspects of bioethics, enriching and deepening the discussion of many topics, including the dead donor rule.