Carol Gill – On the Day of Her Memorial Gathering
On August 31st, Carol Gill, my long time mentor and friend, passed away. Some, perhaps many readers of this blog may not be familiar with Carol’s work or role in the years leading up to my founding of Not Dead Yet. Below are the thoughts I sent to be shared on this day of her Memorial gathering in Illinois:
The closest times I had with Carol were in the late 1980s so I went looking around and found that the Online Archive of California contains a transcript* of an extensive interview with Carol, a treasure trove really. In it, she actually talked about the protest that is part of Not Dead Yet’s origin story, where we met in 1985. Carol explained:
As one part of the disability community’s response to the Elizabeth Bouvia case [an early “right-to-die” case], a bunch of us actually formed a picket line and picketed in front of the building of the southern California ACLU because we were so pissed off with them about not seeing this as a political issue and only interpreting it through medical-model understandings. We did our best first to educate them, to appeal to rationality, emotionality, whatever; we tried to dissuade them from their position, and they continued to help her die legally, so we picketed them and sang, “We Shall Overcome.” Some of them came to the windows and cried because they couldn’t believe, these good progressive liberals, that any group would be protesting them and singing, “We Shall Overcome” against them; some of them were quite shaken up.
In time, we became friends and companions. Carol, Larry, disability movement photographer Tom Olin and I used to hang out together many weekend evenings in Van Nuys, CA. More than anyone else, Carol taught me everything I knew about disability culture, disability pride and, of course, assisted suicide. She was a highly respected expert on the issue and, in April ’96, she was invited to testify about it in a House subcommittee, but she didn’t want to travel and ask me to co-author the testimony and do the trip. The weekend before testifying, I started Not Dead Yet.
The long and short of things, like for so many others, is that Carol’s intelligence, wisdom and insight set the course of more than three decades of my life. Carol continued, with colleagues like Paul Longmore and others, to carry the weight of challenging the growing push in professional journals to embrace assisted suicide based on illness and disability. Her articulation of the disability discrimination that fuels a public policy of assisted suicide has made its way into the federal courts in an ADA challenge to the California assisted suicide law brought last year by the United Spinal Association, Not Dead Yet and others, and continues to guide our struggle.
Diane Coleman
Lisa Blumberg: Denying Access to Food and Water Based on Disability Status
It’s Faustian – giving a nondisabled or slightly disabled person a chance to deny themselves access to food and water if they become significantly disabled and have resulting functional impairments. End of Life Choices New York, a leading supporter of legalized assisted suicide, has developed an “Advance Directive for Receiving Oral Feeding and Fluids in Event of Dementia.”
The form is intended to take effect if “1. I am unable to make informed decisions about my health care, and 2. I am unable to feed myself.” There is some ambiguity about what inability to feed oneself means. Is it inability to use utensils neatly or is it inability to get any food into one’s mouth independently? Also, since the document sweeps in liquids, it is unclear whether it applies if the person needs assistance eating but can drink with a straw.
Be that as it may, the form permits the person to choose Option A or B. Option A states, “If I am suffering from advanced dementia and appear willing to accept food or fluid offered by assisted or hand feeding, my instructions are that I do NOT want to be fed by hand even if I appear to cooperate in being fed by opening my mouth.” Option B allows for “comfort feeding” if the person wants it but with no coaxing or cajoling permitted. Food can be withheld under this option if the person is “indifferent.”
The ethicist Thaddeus Pope believes that this type of form should be available to cover conditions other than dementia such as strokes and brain injury. These just happen to be two conditions where people due to manual dexterity issues may need help with feeding at least temporarily. Pope is part of a group that has drafted an “Advance Directive for Voluntary Stopping Eating and Drinking”. Under this document, a person can indicate when it will be effective such as when “I cannot communicate with others beyond a few words, eye movements, etc.” A person in such a circumstance may be quite competent to make decisions of great complexity. Nonetheless if this box is checked, the form applies.
The core of the form is what happens “if I express the desire to eat or drink.” This depends on the option chosen but the person is out of luck either way.
The form provides that if: “I repeatedly show by words or gestures that I want to eat or drink, I want my caregivers to reassess my palliative care and (initial one):
__ continue to withhold all help with eating and drinking.
__ give me only enough food and drink for comfort even if it’s not nutritionally adequate (also known as ‘comfort feeding only’). I understand this approach will likely prolong my dying process.”
Thus, the form’s title is a sham. It has nothing to do with voluntary stopping eating or drinking. It is about denying access to sustenance based on disability regardless of what the person may want at the time.
Pope isn’t sure about the enforceability of the form but he appears to find merit in putting it out there anyway.
The ethicist Jacob Appel in trying to be dispassionate about the matter has stated, “whether to respect such instructions is a challenging ethical dilemma. It will likely be rendered even more fraught when legal cases begin to arise in which patients who signed such documents in the past and have since become significantly impaired vocally demand food and drink—forcing loved ones and physicians to choose between following the advance directive…or honoring the patient’s current pleas.”
It has been argued that a competent “current self” should be able to make decisions to determine the fate of an incompetent “future self” and it denies autonomy to the “current self” to limit him in doing so. What about the autonomy of the “future self” who may have different views? It is not a solution, as some have suggested, to respond to the food requests of a “future self” with so-called “comfort feeding”. That is not respecting autonomy. It is deceiving a person into thinking he is being nourished when he isn’t.
To my mind, the current-self/future-self dichotomy is false. There is only one person even though that person may go through changes. For example, there are many instances where a person believes they would never want to continue living if they found themselves in a particular condition in the future, such as quadriplegia, but then see value in their life once they actually find themselves in such a condition. Appel calls this “bargaining down” as if the person is settling for a lesser existence. It is more properly known as the disability paradox.
The forms supported by Pope and others pervert the concept of advance directives. First, although some people reach a point where they can’t make medical choices, virtually everyone capable of oral feeding can express whether they want to accept food or not. They can do it in the moment and make shifting decisions from one time to the next. The forms themselves recognize this. Unlike true advance directives, they contain explicit provisions overriding a person’s expressed desires.
Proponents have argued that spoon or hand feeding is “medical treatment” and therefore can be refused in advance. These arguments are spurious. Spoon or hand feeding is simply assistance with activities of daily living much like help in dressing or showering and indeed is less intimate. Countless thousands of individuals incorporate such help into their daily lives.
Moreover, if spoon feeding is designated as medical treatment, how long might it be before proponents move past advance directives allowing the current self to withhold oral food and liquids from a future disabled self to allowing surrogate decision makers to do the same thing – in the name of “compassion,” of course?
Kristi McGarity: The Disability Rights Case Against Mask Bans
