Stephen Mendelsohn
171 Hartford Road, #19
New Britain, CT 06053-1532
Testimony in strong oppostion to H.1998,
An Act Affirming a Terminally Ill Patient's Right to Compassionate Aid in Dying
Senator Keenan, Rep. Sánchez, and members of the Public Health Committee:
As an autistic adult and one of the leaders of Second Thoughts Connecticut, I am here today to express my strong oppostion to H.1998, An Act Affirming a Terminally Ill Patient's Right to Compassionate Aid in Dying. This bill, worse than Question 2 that was rejected by voters of this Commonwealth last year, is a near carbon copy of Connecticut HB 6645, which was soundly rejected earlier this year by the Public Health Committee of Connecticut's General Assembly. As committee Vice-Chair Gayle Slossberg told the New Haven Register, "there wasn't enough support in the committee for the vote. It wasn't even close…. People have difficulty with the idea of a societal go-ahead for suicide… "[1] Under both H.1998 and the bill that was defeated in Connecticut, someone like the late Senator Kennedy could have received a terminal diagnosis, picked up the lethal prescription, and killed himself the same day—his condition having been "sufficiently advanced" to the point that a second opinion would not have been necessary.
Proponents of this bill say that it is about "compassion" and "choice." It is about choice all right—a stark choice about what kind of society we wish to live in. Their slogan, "My Life, My Death, My Choice" reflects Ayn Rand's trinity of me, myself, and I. In a Social Darwinist world that's all about me, there is no room for the interdependence that is an important facet of the lives of successful people with disabilities. People in Oregon and Washington are killing themselves not because of pain, but because of fear of disability, because they view needing assistance with eating or toileting as a "loss of autonomy," a "loss of dignity," and a "burden" on others[2] In Rand's worldview, in books like Atlas Shrugged and The Virtue of Selfishness, those who depend on assistance from others are demeaned as "moochers." John Galt, the hero of Atlas Shrugged, takes an oath, stating, "I swear by my life and love of it, that I will never live for the sake of another man, nor ask another man to live for mine."[3] Rand opposed what she called "kneeling buses" and helping "subnormal" children.[4] Her contempt for people with disabilities continues to infest our politics to this day.
You may have heard of the story of Barbara Wagner, an Oregon woman who was denied chemotherapy by her state's Medicaid program, which offered to pay for assisted sucide instead. Former HMO executive and current Compassion and Choices president Barbara Coombs Lee wrote an op-ed in The Oregonian supporting Oregon's policy of rationing care and steering people toward suicide assistance.[5] As with John Galt, it is all about the Sign of the Dollar. In this Darwinian view, healthcare for people with disabilities, particularly those with "terminal" conditions, costs far too much, and we should redirect our resources toward nondisabled, "producing" people, the so-called "fittest."
A vastly better role model for us to follow would be Raḥamim Melamed-Cohen, who has lived with ALS for nearly two decades. All he can do is think and blink his eyes, which he uses to communicate through his computer, and yet he considers the years he has lived with his extremely severe and "terminal" disability to be the happiest years of his life. According to Melamed-Cohen, "Life today is becoming cheaper and cheaper. Among young people, it finds expression in drugs, violence, and suicide. A [healthy] 16-year-old girl came to me and said, 'If it's okay to shorten the life of someone because of their suffering—well, I'm also suffering, and I'd rather die than live.'"[6]
"My Life. My Death. My Choice." What does that message, plastered on billboards and worn on stickers, send to an autistic or LGBT teenager who is being mercilessly bullied? When you give a societal go-ahead for suicide under the Orwellian term "compassionate aid-in-dying," it becomes contagious, especially in a society obsessed with me, myself, and I. Whatever happened to John Donne's view that "no man is an island; any man's death diminishes me"?
A widely known cross-cultural allegory speaks of disability and interdependence and how we can make our lives into heaven or hell. I am Jewish; the version I am familiar with is attributed to Ḥaim of Romshishok. In this allegory, everyone has a disability; everyone's arms are locked straight out and no one can bend their elbows. In both hell and heaven, there are banquets of sumptuous food. In hell, everyone is self-centered and starves. In heaven, everyone feeds each other.[7] Heaven and hell are metaphors for our world and what we make of it.
H.1998 ought not to pass; allowing it to pass would make a hell of our world by sending a clear message that death is preferable to the alleged "indignity" of needing assistance with daily activities like eating or toileting. We can and must do better. We can make our world closer to heaven by supporting good hospice, palliative care, and self-directed attendant care so that people with "terminal" illnesses can still live full lives. Senator Kennedy showed us by his example. Given two to four months to live, he achieved many of his goals by the time he passed away fifteen months later, leaving his family with memories of a life well lived.
[1]
Ed Stannard, Connecticut General Assembly will not vote on assisted sucide this year, New Haven Register http://www.nhregister.com/general-news/20130405/connecticut-general-assembly-will-not-vote-on-assisted-suicide-bill-this-year-2
[2] Oregon Public Health Division, Oregon Death With Dignity Act—2012 https://public.health.oregon.gov/providerpartnerresources/evaluationresearch/deathwithdignityact/documents/year15.pdf 93.5% of respondents seeking lethal medication cited "loss of autonomy," 92.2% cited "less able to engage in activities making life enjoyable," 77.9% cited "loss of dignity," and 57.1% cited "burden on family, friends/caregivers." Less than 30% cited "inadequate pain control or concern about it."
[3] Ayn Rand, Atlas Shrugged, cited by Bill Virgin, "50 Years On, Rand's 'Atlas' Still Relevant" Seattle Post-Intellegencier http://www.seattlepi.com/news/article/50-years-on-Rand-s-Atlas-still-relevant-1252109.php
[4] Ayn Rand on "Subnormal" Children and the Handicapped http://www.youtube.com/watch?v=Q1HD8KXn-kI
[5] Barbara Coombs Lee, "Sensationalizing a Sad Case Cheats the Public of Sound Debate," The Oregonian http://www.oregonlive.com/opinion/index.ssf/2008/11/sensationalizing_a_sad_case_ch.html
[6] Rabbi Yisrael Rutman, "Mercy Redefined" http://www.torah.org/features/firstperson/mercyredefined.html
[7] Rabbi Marc Gellman, "Famous Spiritual Story Varies Among Faiths and Cultures, but Carries the Same Message," Chicago Tribune, August 23, 2012 http://articles.chicagotribune.com/2012-08-23/features/sns-201208221330--tms--godsqudctngs-a20120823-20120823_1_remarkable-story-heaven-text