Before I’d done the readings from Harriet McBryde Johnson and Taira with Amundson, I formed an opinion based on the rights of and access to both abortion and assisted suicide. I believed that abortion should be based on the mother’s own personal reasons with respect to her autonomy. Assisted suicide should be legalized for the personal autonomy of the individual. I still maintain these opinions; however, while the right to abortion and assisted suicide should be based on autonomy because of an individual’s desires, I now understand that for many- especially as relating to the abortion and infanticide of children with disabilities and the assisted suicide of individuals with disabilities and dementia- choice is determined by prejudice and would be forced, as autonomy is not really free.
Cosmetic normality reinforces many stigmas that justify eugenics. As Amundson pointed out in his 2000 paper, the concept of normality and not the concept of function is what currently controls “thought[s] about disadvantages caused by biological atypicality” (ibid.). He goes on to explain that “if thought about the level of functional performance rather than the mode, fashion, or style of function, the disadvantages of the disabled would not seem so natural and inevitable” (ibid.). This distinction between level and mode of function is important when considering the quality of life of people with disabilities.
Misinterpretations about quality of life and the maintenance of normality are the basis for eugenics and euthanasia. In “Unspeakable Conversations” Harriet McBryde Johnson discusses her interactions with Peter Singer, a philosopher who insists on the legalization of infanticide and assisted suicide. He insists on the legalization of “kill[ing] under some circumstances, at any age, individuals with cognitive impairments so severe that” they aren’t “’persons,’” and to be a person, one must possess “awareness of [one’s] own existence in time” as well as the “capacity to harbor preferences as to the future, including the preference for continuing to live” (Johnson 2003). According to Singer, infants aren’t people because they are born without self-awareness. This definition of “person” also includes people who have lost their “sense of personhood or the distinction between past, present, and future”. Singer claims that these individuals have lost their right to live.
While researching Alzheimer’s disease and related dementia (ADRD) spectrum disorders, I learned that many people with ADRD, while needing 24-hour care because they have no concept of time as it is structured in our world, still have a sense of personhood. Singer would disagree, but in the paper Anne Davis Basting wrote about her workshops with ADRD patients. Giving each person assigned roles to act out enabled the patients to share glimpses of their former lives. Basting was able to give a voice to many silenced, shut away in the gulag. I write, “The participants were able to retain the abilities to respond as a group and to shape a story with fragments of their own memories. With each visit, the participants’ ability to relate to each other became more focused, and parts of each person’s personality emerged clearly within the group setting (89-92)” (Wilson project).
On the opposite end of the age spectrum, we have no proof that babies are born without self awareness. There are many documented cases of people recalling events that occurred at various ages. Many sociologists note the variable age of children coming into consciousness between ages 2 and 5. Some people have even reported cognitive memories of events they experienced in the womb.
Singer’s argument, is based on the assumption of absolutes. He says, “Let’s assume we can prove, absolutely, that the individual is totally unconscious and that we can know absolutely [they’ll] never regain consciousness” (Johnson 2003). While we can assume these conditions, we cannot know conclusively what is going on inside a person or their cognitive ability while they are unconscious. Being unable to communicate does not directly correlate with the inactivity of the mind.
Taira and Amundson express that if some decisions were left up to medical professionals responsible for care, many people who do not have a voice with which to defend themselves would be euthanized. Taira experienced the prejudices that come with the social construction of disability first-hand after suffering TBI. She was still gripping with visual-spatial difficulty when she overheard and understood that medical professionals felt her life was not worth living since her accident. The bias present in the medical community is what perpetuates the fear gulag and maintains the assumption that having a disability no longer makes life worth living. Taira realized that there would be no true freedom in assisted suicide. She explains, “True freedom is possible only in the context of equality” (ibid.).
The inequality of people with disabilities can lead to the mass killing of people based on prejudice regarding intrinsic happiness and a misunderstanding of functionality. Singer’s perspective is a leading force in maintaining the stigmas surrounding normality and quality of life, especially the stigma that a person with a disability has a diminished quality of life compared with an abled person. While some things are incurable, Johnson tells Princeton students that many people with disabilities “live long, interesting, incurable lives”.
Currently, people with strong biases and prejudices about the quality of life have the power over individuals with disabilities. Their prejudices can lead to mass genocide of people with disabilities. As Harriet wrote, “the veneer of beneficence” is “not about autonomy, but about nondisabled people telling disabled people what’s good for them…Choice is illusory in a context of pervasive inequality… [and it is]structured by oppression.” Most importantly, Johnson stresses, the option for assisted suicide should not be offered until assistance with daily living is offered.
No comments:
Post a Comment