I am not in Florida and I really haven't followed the intricate details of the Shiavo case to know what the truth is re Terri's inabilities or abilities. But I will offer this in defense of all the disabled activists who are fighting to save Terri's life. (For regular updates, go to http://terrisfight.org/ ) The following is an excerpt from my book Beyond Ramps. It may give some insight as to why 17 (and perhaps more by now) major disability rights organizations are against Terri being killed. Marta
<..> Dr. Carol Gill, psychologist and President of the Chicago Institute of Disability Research, documented in Mainstream Magazine the death of one young woman, Christine Busalacchi whose father simply wanted his daughter to die after she became brain injured in a car accident.18
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Pete Busalacchi claimed, "My daughter is damn full gone" but according to Dr. Gill's research, hospital workers said Christine interacted with them, said "hi", giggled when they joked with her, made funny faces, watched soaps on TV, used simple communication switches to request food, and even mouthed the words to "Rudolf the Red-nosed Reindeer" at Christmas. Staff felt that with proper rehabilitation, Christine could regain more function. However, Christine's father could not accept his cognitively disabled daughter and wanted to move her to a place where her food and water could be taken away.
Dr. Gill explains the grief dynamics involved:
When a child is born imperfect or when a family member acquires a significant disability, the family experiences a profound sense of loss. Shock, denial, anger, despair and all the other concomitants of mourning may occur. With proper emotional support, medical guidance, information, and the passage of time, most families seem to weather the loss. They deal with the fact that the disability won't go away. They learn to recognize the ways their loved one is still the same person she/he was before the disability while coming to terms with the ways she/he is different.
Occasionally, however, family members get stuck in grief, particularly some parents of children and adults who become disabled. Like Pete Busalacchi, they seem unable to let go of their picture of their loved ones as non-disabled so they can accept them following injury or illness. Initially, they hope and pray for recovery. But when all options for cure are exhausted and they are confronted with the irreversibility of a severe disability, they begin to accept the idea of death as a resolution. Death may seem more finite and manageable a loss than the never-ending pain of having a loved one altered by severe disability. . . . [The family member sees] the person as an imposter. They resent those who argue for the continued support of the imposter's life.
In such instances, says Dr. Gill, the family may project that the disabled person is the one suffering and use that to legitimize a decision to terminate his or her life. But Dr. Gill points out that it is often the family that is suffering and it is the family in this frame of mind who is making the life or death decisions for their disabled relative.
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Since Christine was only 17, her father had the power to make her medical decisions. One choice he made was to have a feeding tube inserted into her abdomen although according to staff, Christine was taking food by mouth. The feeding tube is critical to Christine's outcome because it represented the legal "artificial nutrition" that would be used in court to uphold that Christine was on "extraordinary" life support. Since the 1986 Bouvia court decision gave the individual the right to determine one's medical care and remove feeding tubes, Christine's father, now the arbiter of her care, could have the "artificial" nutrition removed and allow her to die even though Christine could eat on her own.
Despite hospital staff's testimony to Christine's abilities and their insistence that rehabilitation would further improve her condition, despite the existence of a video which showed Christine to be interactive and communicative (which her father wanted suppressed, threatening legal action against persons who circulated the tape), the Missouri Attorney General granted the father's wish. The medical professionals then moved Christine to a facility where they withheld all food and water and starved her to death.
Wesley Smith, a consumer advocate from Oakland, California, who follows right-to-die cases across the country, is worried that increasingly euthanasia decisions are being made silently, quickly, and routinely in institutions behind closed doors.
All over the country, in hospitals, nursing homes and other facilities, conscious but cognitively disabled and aged people are being denied adequate care and/or are being starved and dehydrated to death in the name of patient autonomy, "quality of life" and "best interests of the patient" determinations. But what is really going on is the creation of a disposable caste of people whom we the healthy find too emotionally painful, too expensive or too inconvenient to care for, and whose intentional killing we increasingly find all too easy to rationalize.19
Even in cases where the adult patient expresses a distinct desire to live, the institutional momentum seems to be towards death, not life. Take Marjorie Nighbert, a woman who had an advanced directive to stop treatment if she became incapacitated, had a stroke, and was hospitalized. Because Marjorie had written the advanced directive, her brother
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demanded that the feeding tube which saved her life be withdrawn. But a fully conscious Marjorie changed her mind upon disablement and decided that she wanted to live afterall. She specifically begged the nurses for food. Smith wrote, "This was so upsetting to one nurse that she blew the whistle. Enter the court, where, after a hurried investigation, it was determined that Marjorie was not medically competent to retract her advanced directive (in other words, to ask for the "treatment" of food). Thus even though she had asked to be fed, the starvation was allowed to continue." <..> --