Tuesday, November 29, 2011
Rather, I’d like to give a shout-out to Alicia Ouellette at Albany Law School. Ever since the hectic days during and after the Schiavo case, I, here, and others such as Anita Silvers and Leslie Francis, here, have pondered and resisted an argument various disability advocacy groups, including Not Dead Yet, advanced in the spectacle’s waning days. Specifically, as Congress and the federal courts considered the case, Not Dead Yet and others argued that removal of a PEG tube from Ms. Schiavo, who had lain in a persistent vegetative state for years without an advance directive requesting withdrawal, would violate the Americans With Disabilities Act.
In her (relatively) recent book Bioethics and Disability: Toward a Disability-Conscious Bioethics, Professor Ouellette offers one of the most thoughtful responses to that argument that I have read. The book displays Professor Ouellette’s great understanding of the viewpoints of persons with disabilities. Against that backdrop, Professor Ouellette nevertheless concludes that
Not Dead Yet’s argument turns the ADA on its head. Laws that give people with disabilities access to a choice of medically acceptable treatments protect the rights of people with disabilities – even if one of the choices is the termination of treatment. It is the denial of access to all available options that would violate the ADA. In fact, surrogacy laws ensure that the ADA’s demand for access is fulfilled. Substituted-judgment and best-interests-based statutes are reasonable accommodations. They give the people who lack competence to make their own health decisions access to the same options available to those who have competence. In this way, surrogacy statutes can be compared to access ramps installed by building owners after the passage of the ADA. Just as ramps were not the equivalent to stairs (e.g., they might be located in the back of the building and take longer to traverse than stairs), surrogacy laws are not the equivalent to an actual exercise of medical decision making by the disabled person. Nonetheless, both are reasonable accommodations. Just like ramps allow the person with the disability to get into a building, surrogacy laws allow the patient access to all appropriate treatment decisions, including no treatment at all.
So long as a surrogate is choosing between medically acceptable options, the ADA has no role in a medical decision-making case. . . . .
Thank you, Professor Ouellette, for your work.