I love Vermont. My family has owned a home here since the 1980s and I guess you could say that I've adopted the state as my own. I am also a disabled woman and much of my own identification with that community was forged here as I grew up role playing, painting and dreaming alongside the streams and rivers that run through the town of Waitsfield.
Being disabled has also made me very cognizant of the right-to-die movement. Since 2007, I have engaged in an extensive exploration of what disability studies scholar Rosemarie Garland Thompson refers to as the "cultural logic of euthanasia" which I incorporated into recently published research regarding the representation of disability and assisted suicide in film music. However, the issue of assisted death is personal for me, which is why I am dismayed that Act 39 was ever implemented in the first place.
For instance, in the course of doing research for my aforementioned book chapter, I had occasion to review the writings of many utilitarian bioethicists whose arguments concerning disability and death with dignity are framed in regard to familial burden, which tends to be situated as a legitimate reason for choosing or being obliged to die. Such statements are similar to hate speech I experienced growing up and I was shocked when I first saw it in bioethics literature.
I am an autistic person who struggles with executive functioning. I still live with my parents, who serve me in completing many daily tasks. This often makes me feel guilty. Moreover, the philosophical reflection that my studies engendered means that such ideas are in my mind. During a particularly horrible bout of depression, I thought, "Maybe the assisted suicide advocates are right; maybe God is allowing this to happen because it is OK; I am a burden to my family and so maybe it would be OK if I killed myself." I wound up hurting myself impulsively and going to the emergency room. I know that the people behind Act 39 do not intend for such things to happen, but that does not change my experience.
As a person who has lived with major depression for 18 of my 32 years, I know that I am not the only disabled person whose experience of suicidality has intersected with the pervasive cultural message that we are a burden. I am also an advocate for disabled students in foster care. Many of them have psychiatric disabilities; but unlike me, they do not have loving families to stand by them following an incident of self-harm. I'll never forget one young, African-American man whose initial caretakers told me not to worry much about his education because he was "too violent" to be on his own and would "just be going to the mental hospital" when he graduated.
If I were to get cancer, I would like have access to any medical treatment that I wanted. He, in contrast, would be offered limited choices for treatment, one of which would be assisted suicide. Unlike the people whose stories are cited to illustrate the success of Act 39, his body would always be partially owned by the state. Hence, any ostensive "choice" for assisted suicide would be made in the context of his social subjugation.
The contrast between his situation and mine represents why most disability rights organizations never wanted "aid in dying" to be legalized at all. In the last hearing, senators heard sunny stories about disproportionately wealthy Vermont residents who, by their family's account, enjoyed a comfortable death. However, Act 39 exists in a culture where the experiences of disenfranchised individuals are invisible. Senate bill 108 would maintain safeguards in Act 39, but no safeguard can correct the systemic injustice that is inherent in the practice of assisted suicide. Act 39 should be repealed.