Several years ago, Patient Choices, the group that, with lots of money from Compassion and Choices and the support of Governor Peter Shumlin, later succeeded in getting assisted suicide made legal in Vermont, brought George Eighmey, veteran C&C activist and “support volunteer” at the bedsides of people committing assisted suicide, , to speak in Manchester, Vermont. Many of us who oppose assisted suicide turned up to ask him questions; in fact there were many more of us than supporters of assisted suicide.
Beyond the difference in numbers of people who cared enough about the issue to turn out for the meeting, we remember that there was a huge problem with the venue. It was completely inaccessible to people with disabilities. We pointed this out to Dick Walters, the head of Patient Choices, and he told us he had been unaware of the problem. Now no one with a disability happened to show up that night, but the fact that Walters and the paid Patient Choices’ organizer had failed to check on accessibility and choose a different venue woke us up to what we believe to be one of the defining characteristics of assisted suicide proponents.
They are people of privilege, not just financially, as the studies claiming to refute the idea that people who seek assistance in suicide are vulnerable point out, but also of physical privilege. They are people who were born healthy, have had the best of medical care all their lives, and have done everything possible to stay healthy; they are the people one sees in expensive gyms and at natural food stores. They are almost all white. They are people who take very good care of themselves and enjoy life’s expensive best: travel to exotic places, sports like skiing and rock climbing, good restaurants, the best continuing care retirement communities. Some of these people have certainly taken care of others, but we know from the profiles the Oregon and Washington reports give us and from the stories provided by Compassion and Choices itself __Brittany Maynard’s story is a very good example__ that they have taken extremely good care of themselves.
When a person with Brittany Maynard’s profile is confronted with disability, he or she thinks of ugliness, lack of ability to enjoy life, and inability to take care of personal needs. We are not guessing or judging what they think. These people tell us themselves. Brittany Maynard described her suffering to a reporter as having gained 25 pounds. The commercials she made for assisted suicide showed her trying to cram as much travel as possible into her final months. She also repeatedly told reporters she would commit suicide before she was disabled by a stroke or seizures, before she became blind, before others had to take care of her. Other assisted suicide patients say the same things; of the reasons they give Oregon and Washington doctors for choosing to die, loss of autonomy and loss of the ability to enjoy previously enjoyable activities are at the top of the list.
These are privileged people not willing to give up their privileges, and the record shows that they have very little empathy with those whose privilege is less. They express a utilitarian willingness to sacrifice the less privileged for some idea of the common good as they, the privileged, define it. C&C’s spokesperson, Barbara Coombs Lee, wrote an article defending the Oregon Health Plan’s (Oregon Medicaid’s) denial of care to two patients in a letter offering coverage of the much cheaper alternative of assisted suicide.
In NJ, where assisted suicide has been passed in the full Assembly and voted out of a Senate committee, and could now be brought without notice before the full Senate for debate and a vote, the hearings that took place before the Senate committee are a case in point. First there was a hearing that completely excluded testimony from people with disabilities opposed to the bill. After protests, there was a second hearing which drew hundreds of people, including people who traveled in wheelchairs. If they didn’t seem so isolated from and oblivious to the world around them, one would think the senators had purposely tried to make it impossible for people with disabilities to testify at all.
Here, in italics, is the perspective of a person with disabilities who was at that second hearing. We took it, with permission, from Meghan Schrader’s blog: https://diaryofanangrysped.wordpress.com/2014/12/21/privilege-in-the-hearing-for-s382/ . It should be a wake up call to a lot of us.
Please, as you read it, remember that people who are old and people who are very sick are also people with disabilities. All of us will be people with disabilities sooner or later, that is, unless society makes a decision that it is better to be dead than disabled. We don’t want to go there. We ask the legislatures in the four states that currently have assisted suicide legislation pending: please don’t take us there. We ask legislators in Vermont: please repeal this terrible law.
To put it simply, the term privilege refers to advantages that someone has or doesn’t have by virtue of his or her identity as a member of a culturally dominant or disenfranchised group; and to the effect that those advantages or disadvantages have on each group’s access to political power. These advantages and disadvantages exist regardless of individual awareness or intent. In political terms, this reality means that while all citizens ostensibly have autonomy, the execution of independence is interrelated with how society conducts its affairs.
During yesterday’s hearing, I witnessed the mechanisms of ablebodied privilege in action. First of all, the hearing on S382 started after a lunch break, much latter than the time that was cited on the Senate’s website. This meant that several people whose disabilities cause fatigue or necessitate a consistent meal schedule had to leave the hearing prior to testifying. The latter sin of omission reflects the cultural invisibility of disabled people. During this hearing, senators did not consider the presence of people whose bodies required a greater amount of rest, food, and restroom access than that which was available to those who waited until the end of the hearing. Hence, disabled people were constrained by the format of the hearing; which favored ablebodied individuals who did not have the same needs. These could have been easily rectified by allowing people with such disabilities to testify earlier in the hearing.
Dawn Theresa Parkot, who uses an assisted communication device, had to have her testimony read by her father, because the machine’s battery ran out of power before she was called to speak. This restricted her choices regarding how she would communicate. None of these things were issues that ablebodied attendees had to confront. By failing to anticipate this problem, senators gave the latter a systemic advantage over the disabled.
While some may answer that this is a just effect of randomly ordered testimony, this set up functions to constrain the participation of disabled people. Ablebodied people who waited long hours before testifying did not have that opportunity removed by structural barriers to their participation. In contrast, disabled people whose physical disabilities precluded such delays made their decisions to leave in the context of an interdependent relationship with how such proceedings are structured. Disabled individuals had the autonomous choice to testify, but that autonomy was constrained by the mechanisms of ablebodied dominance.
Moreover, such systemic conditions provide fodder for our opposition’s arguments: “oh that poor girl with cerebral palsy; she couldn’t even testify independently. She should have the right to decide whether she wants to live like that. Or, even her father: after all, he is her only voice.” Well, if Senators had had the insight to provide her with an appropriate time slot, she could have testified independently. It senators’ lack of incorporation of her existence into their worlds that prevented her from doing that; yet these are the same people who would be entrusted with regulating assisted suicide. We are expected to proceed with the naive assumption that they will do that, even as they fail to address far more basic problems.
During the hearing, a senator said that that accusations of malicious intent were inaccurate; that everyone supporting the bill had good intentions. Not only does such reassurance privilege the perspectives if those individuals, it misrepresents our argument: It doesn’t matter that senators wouldn’t pressure a disabled person to commit suicide. The pressure we face is systemic. Every time leaders maintain inaccessible buildings, leave disability out of discussions about diversity and ignore the disability community’s perspectives on pivotal issues, they participate in that system, whether they mean to or not.
In short, Senators and staff did not recognize and manage the need for acommodations relating to these basic inequalities. If lawmakers do not anticipate these rudimentary issues, than how can they be expected to guard against ableist discrimination in the practice of assisted suicide?