This is a modified version of the post that originally appeared at After Gadget.
Imagine this situation: A woman arrives at a hospital for a medical procedure. She is obviously sick, in pain, and severely disabled. She’s in a wheelchair and on oxygen. She needs help getting from her car to her wheelchair, and going to the bathroom, and changing into her gown. Whenever she’s moved, she grimaces, her hands and feet curled in pain. It looks and sounds like talking and even breathing are an effort. In fact, her disease has rendered her incoherent, so the person with her translates her gestures and sounds to the nurses. The patient is asking for a legal document before the procedure — a form.
The nurse immediately understands. “I know what you want,” she says and returns quickly with the paperwork. She explains that these are advance directive forms that the patient can fill out to decline life-saving treatment. The patient says no, she just wanted to update the contact information on her health care proxy forms, which the hospital keeps on file. In fact, the reason she is certain to keep her health care proxy forms updated is that she does want extreme measures. No matter how grim her situation appears from the outside, she wants her friends to advocate for her right and desire to live.
Of course, this is not hypothetical. The woman is me. That incident happened a few years ago. At the time, I was too stunned to take in the meaning of what happened.
It was only later that I realized that the nurse had, in effect, offered me a DNR (do not resuscitate) form without my asking, that she had basically asked me if I wanted to die. It’s possible she offers those forms to everyone, but I think it’s more likely that my appearance — the fact that I was visibly severely disabled — led the nurse to the conclusion that I didn’t consider my life worth fighting for.
That story is part of my very personal reason for opposing ballot question 2: I know the “slippery slope” referred to below is not a hypothetical for the future. Some people have already slid down it. Some people have already been pushed. I learned that day that I had to hold onto my breaks even tighter than I thought I did because I was already on the slope.
This is an issue where many of the most vulnerable 99 percent find ourselves not being heard by others we would like to be our allies. Most liberals tend to be in favor of assisted suicide, but they are often not acquainted with the disability rights perspective on this issue. I think this quote by Carol Gill — from her excellent article on strawman arguments used against disability rights perspectives — really sums it up:
Diane Coleman has characterized the leading proponents of legalized assisted suicide as “white, well-off, worried, and well.” They have enjoyed a good deal of control, know exactly what they have to lose, and are determined to retain it until death. Unfortunately, viewing the world from a position of privilege may limit one’s insight into the consequences of a policy change whose greatest impact could fall on socially marginalized groups.
The issue of pain relief is not actually at the center of the issue. The fact is that the majority of people who use doctor-assisted suicide do not give pain as their primary reason for wanting to die.
They list issues like being a “burden” and not wanting to lose certain physical functions — not wanting to be disabled, in other words.
When disabled people have sufficient personal assistance services in our homes, we do not need to worry about “burdening” family members with care. We can hire, train, and fire our own assistants in the comfort and dignity of our own homes. This is a social issue — a social justice issue — not a medical issue. I know this from painful experience.
I have had friends and members of my community kill themselves, including two who went to Jack Kevorkian. Neither of them were terminally ill, which was the case for most of Kevorkian’s victims. They had chronic illnesses like mine, which were not taken seriously. One, a woman, primarily did it because she didn’t want to be a “burden” to her husband and because nobody believed she was really sick, that her physical illness was real. This is a social problem, not a medical one. It has to do with the way people with disabilities and chronic illness are treated in this culture, and giving us the “solution” of offing ourselves is a pretty chilling form of providing a social solution.
The other, a man, went to Kevorkian primarily because he was ground down by poverty and by not getting decent pain management. Again, this was because doctors didn’t believe he was really sick. He was not terminal. He was tired of being treated like his life didn’t matter, and eventually he obviously came to that conclusion himself. I was particularly shaken by his death because, as I said to a mutual friend of ours when I heard the news, “But he was so resourceful.” I couldn’t imagine him — who so often gave info and referral to others with disabilities in poverty looking for ways to get by — giving up. My friend said, and I think she hit the nail on the head, “I think sometimes people are most resourceful because they are so desperate.” Again, Bill chose “assisted suicide” not because of a medical condition, but because of societal abuse/neglect.
Diane Coleman said it best in the New York Times, “It’s the ultimate form of discrimination to offer people with disabilities help to die without having offered real options to live.”
Furthermore, members of the #Occupy movement MUST be aware of how corporations and money have and will affect how assisted suicide laws are used.
The more laws that are passed that give managed care companies the option of paying for a suicide pill instead of paying for chronic pain management, the more people with chronic pain or life-threatening illness will be offered a cheap suicide rather than an “expensive” livable option. You only need look at how Lyme disease treatment has gone in the US know how this happens.
But there are a lot more reasons to vote against Question 2. The fact is that even if you support the idea of assisted suicide for dying people — the right of someone who is actively dying, who is in pain at the end of their life and wants a way to hasten death by just a few days — you should still oppose this ballot initiative because it is full of gaps and loopholes and opportunities for abuse. It is, quite simply, a bad bill, a bill that ought to spur you towards Second Thoughts:
- Question 2 is modeled in the laws in Oregon and Washington — laws which have led to documented cases of abuse, discrimination, and pressures to choose suicide over medical treatment based on cost considerations. For example, from an article by John Kelly in Disability Issues: “Disabled people constantly hear how expensive we are, how money could be better spent elsewhere. In Oregon, Barbara Wagner and Randy Stroup received letters from Oregon Medicaid denying them chemotherapy for their cancer.The letters did inform them, however, that the state would cover the $100 cost of assisted suicide. Because assisted suicide will always be the cheapest treatment, its availability will inevitably affect medical decision-making. In a system constantly under pressure to cut costs, choice will be constrained.” (More on this topic in this excellent article, PDF, by Carol Gill.)
- Elders and people with disabilities are at greater risk for abuse than the general public, and they are also the people most affected by this bill. The rate for elder abuse in Massachusetts is estimated at one in 10 already, with the vast majority of abusers being caretakers — family, heirs, and providers of medical and personal care — the same people in a position to help someone obtain and ingest the poison pill.
- Risk for abuse is inherent in the law: According to the Cambridge Commission for Person’s with Disabilities, “Under this initiative, an heir could be a witness and help someone sign up for assisted suicide despite a potential conflict of interest. Once a lethal drug is in the home, there is no requirement for professional oversight to monitor how that drug is administered.“
- The National Council on Disability (NCD) Position Paper on Assisted Suicide states that: “The dangers of permitting physician-assisted suicide are immense. The pressures upon people with disabilities to choose to end their lives, and the insidious appropriation by others of the right to make that choice for them are already prevalent and will continue to increase as managed health care and limitations upon health care resources precipitate increased ‘rationing’ of health care services and health care financing. . . . The so-called ‘slippery slope’ already operates in regard to individuals with disabilities. . . . If assisted suicide were to be legalized, the most dire ramifications for people with disabilities would ensue unless stringent procedural prerequisites were established to prevent its misuse, abuse, improper application, and creeping expansion.”
- Inexact wording and application. Anyone who a doctor says has six months or less to live can be given fatal drugs, but doctors are fallible, medical conditions are diverse, unique, and complex — it is not easy to determine how long someone will live. Many people outlive their prognoses for months or years. Some even recover. (I know someone who was terminally ill 15 years ago, and she’s still writing and publishing books today!) It is also a fact that wherever assisted suicide is legal — whether in Oregon or the Netherlands — the definition of who is eligible becomes broader and broader. It is not confined to people who are imminently dying, but also to people who are not terminally ill, particularly people with disabilities, chronic illness, or elderly people.
- Inattention to mental health issues. According to Second Thoughts member, John Kelly, “In 2011, exactly 1 out of 71 Oregonians seeking assisted suicide were referred for psychiatric evaluation. With the total 14-year referral rate below 7%, people are not being adequately evaluated. Michael Freeland, who had a 43-year history of depression and suicide attempts, easily got a lethal prescription, and it was only because he mistakenly called an opposition group that he was spared suicide. He also outlived his terminal diagnosis.”
- One of the key reasons that disability rights activists oppose such laws is that the focus of the laws, and the way they are carried out, are not really about providing more comfort in the last hours of a life that is already fading. It is about fears and lack of understanding about what it means to be disabled or ill — a state that many of us spend our entire lives in, often quite happily. Quoting Kelly again: “That word ‘dignity’ in the act title signals that assisted suicide is not about preventing pain and suffering during the actual dying process, but about escaping the perceived quality-of-life beforehand. People’s concerns listed by prescribing doctors are almost exclusively social: people seek assisted suicide because of limitations on activities, incontinence,feeling like a burden, and perceived loss of dignity. We disabled people know that our dignity does not depend on performing our own self-care or being continent every hour of every day. We know that there are social supports such as home care and PCAs that can remove any family burden, and we understand that our dignity is just fine thank you, without having to die to get it.”
For more information on Question 2 and assisted suicide, please visit the Second Thoughts website or read this excellent New York Times op-ed on Massachusetts Question 2 which was just published on Wednesday.