|Disability Studies Quarterly
Summer/Fall 2003, Volume 23, No. 3/4
Copyright 2003 by the Society
for Disability Studies
Disability Culture meets Euthanasia Culture: Lessons from my cat
You could call her a lucky cat, I guess. For most of her seventeen years on earth (that's 91+ human years) Bunny was healthy. She had very little to do with veterinarians. She was almost never sick.
That all changed with one phone call, received around eight p.m., November 4th, 2001. She'd been to the vet for blood tests and x-rays because of a persistent ear infection and an unusual eye condition called Horner's syndrome. Neither one seemed particularly serious. Other than those seemingly minor problems, Bunny appeared in robust good health. Six months earlier, at her annual checkup, she'd been fine. When the vet called, I was expecting him to tell me how he would fix her problems.
Instead, in that phone call of less than ten minutes, he told me two things: one, Bunny had lung cancer. There was no time to absorb the shock of this before he told me the second thing:
I should kill her.
That's not exactly what he said, of course. What he said was "you should put her to sleep". To put a pet to sleep in veterinary euphemism means to kill by lethal injection, and is also known as euthanasia. Perhaps "putting to sleep" is used to differentiate animal killing from its human counterpart, known also as euthanasia. Euthanasia for people, which is generally illegal, is one of the most controversial and emotionally charged ethical issues humans have ever faced.
It's a mirror opposite in the animal world. Euthanasia for pets, as I was about to find out, is practically a sacrament. And I stress that this is true even or especially among those pet owners who value their animals no less than they would children.
I didn't want to have a hand in ending the life of my Bunny, not on November 4th, not ever. I wanted to talk about treatment and hope, and eventually I wanted her to die in her own time.
But I had already entered a world in which that was impossible.The culture of euthanasia
When you enter a world where the assumption is that you will act a certain way and that other ways are impossible or unacceptable, that is a culture. What I am going to refer to now as the "culture of euthanasia" is the assumption that since every animal can die by its owner's hand, it should. This assumption has implications for pets, owners, and veterinarians.
Culture not only promotes or proscribes certain behaviors or beliefs, but assigns values to them. This is how it works; by subtle and not so subtle messages about good and bad, right and wrong. The enjoinders are always moral, not medical. But no one ever acknowledges that the argument is being couched in moral terms. (Cultures always present themselves as value-neutral--"just the way things are"--while at the same time being powerful enforcers of values.)
For people with sick animals, the message is unequivocal. You are a bad person if you do not put your pet to death. The message was everywhere I turned: support groups for animals with serious illness, hotlines such as those sponsored by veterinary schools and animal welfare organizations, and the many pet illness/pet loss websites. It was in the elevator of my apartment building when strangers saw me carrying my cat to the vet and asked what was wrong with her.
"You should think about putting her to sleep"
"It's not fair to her not to do it."
"You have to put her to sleep; it's the humane thing to do"
"It's a beautiful thing to do."
"It's a gift you give them."
"Do the right thing."
"You need to put her to sleep."
"It's selfish to prolong a pet's suffering simply to postpone one's own."
(All of the above are quotes from vets except the last three: from a casual acquaintance who had euthanized three dogs; a neighbor who urged euthanasia on her son's dog prior to the dog's full recovery from an expensive illness; a pet loss website.)
Only once in those months--at my cat's very last vet visit--did I hear the m word used. "Some people," said this oncologist, "have moral objections to euthanasia."
He paused as if he'd broken a taboo. He'd just said it was time to get over my emotional and intellectual objections, and could sense that in my case this wasn't going to be enough. Though managing to convey his disapproval of people with moral qualms, placing us just above Christian Scientists, at least he stopped short of telling me I had to get over my objections.
He ended the visit by telling me of another, different horrible painful way my cat could die (heart failure) besides the horrible way I'd already been told about (suffocation). He left his unsaid words filling the air: "Do you want your cat to die like that?"
Even on freewheeling, unmoderated internet discussion groups, I could not find anyone who questioned the need for euthanasia, much less anyone like me who was determined not to resort to it. Statements like "I have always known that in taking responsibility for these animals I would one day face the decision of ending their lives"; "The quality of my pet's life is far more important to me than its quantity"; "I will not let my pet get to the point of---(pain, immobility, labored breathing, or whatever the owner most feared)" seemed to preclude any discussion of whether to euthanize.
Nevertheless, there was much discussion about when, and no consensus as to what circumstances justified putting pets to sleep. "Her meow is so faint"; "he can no longer jump on the furniture"; "I'm afraid he will hurt himself falling down the stairs". Once the deed was done, though, there was obvious guilt and doubt, and much rationalization: "she gave me a sign", "I saw that look in her eyes", "I know he wouldn't have wanted to live if he were less than 100%".
The only source I could find which even posed the questions: "Is euthanasia really right at all? Is it just another word for murder?" was that of a self-proclaimed "animal communicator", i.e. one who claims to have dialogues with the spirits of dead animals. She says animals are "OK" with euthanasia if you don't do it too soon.Euthanasia culture is bad medicine
Euthanasia culture pervades veterinary medicine. By this I mean that euthanasia has become the first rather than the last resort following diagnosis of a terminal or almost always terminal disease. Thus, in the same phone call when the vet tells you your seemingly healthy pet is dying, and before you can begin to absorb the shock, he tells you to put her to sleep.
Isn't there supposed to be something in the middle? If that's a slippery slope, it's a double black diamond run off the top of a very steep mountain.
Could I have gone to another vet? But the culture is everywhere.
I couldn't see my way out of it then. But now that my cat is dead, I see how the vet's automatic recommendation of euthanasia and his discouragement of treatment options hurt me and my cat. I like to think I'm a tough and assertive person, but I was also very scared. I was able to be intimidated by his disapproval, by his attempts to talk me out of investigating treatment options--"What are you trying to gain? How much time is enough? How much money are you going to waste?"
I was all the more intimidated because his euthanasia pitch was couched in the postures of caring and concern. He took extra time with me, didn't he, offered me Kleenex and grief counselors, even waived parts of his fee? My cat purred at him and rubbed her head on his sleeve. How could I argue with that?
I did, but too late. I pushed for an ultrasound with the person he recommended, even though it took two weeks to get an appointment, even though I could feel the vet's disapproval. The ultrasound specialist worked only one day a week. I saw the oncologist recommended by my vet to get the test results. He must have gotten some other cat's ultrasound mixed up with mine, or at least that's the most charitable explanation I have for why he gave me the wrong results. He made me as happy as I have ever been when he told me that there was hope, that Bunny was a good candidate for surgery. I lived on that hope for two weeks until we saw the surgeon. I thought we had time, that the cancer hadn't spread. The surgeon said the oncologist was mistaken. The ultrasound had been, in fact, useless; unreadable for some technical reason. She did another x-ray and told me that if there had ever been a time window for surgery, it had now passed. I saw what she wrote in the chart: "nonresectable".
Absolutely nothing could be done for my cat now. No chemo, no radiation. Why not kill her?
I must emphasize again that up to and including this time my cat had no symptoms whatsoever. She was not in pain. She did not know she was ill. This was not "mercy killing". There was no suffering.
For a long time after this she had no symptoms. There were nearly two months of this, two months of perfectly fine life the vet would have denied her.
One day, December 23rd, she started breathing with difficulty. I had so many questions: what could be done, what did this mean, was this the end, how much time did she have. But after being told three times to put my cat to sleep, now that something was finally visibly wrong with her I no longer felt comfortable calling the vet to ask about her symptoms and what I could do about them. He had made me feel guilty for wanting to take care of her rather than put her to death. And if she was now suffering--which was not at all clear--I had only myself to blame.
The one question that was posed to me in so many ways once we found out Bunny had cancer was this: How much suffering was I to allow her?
What kind of answer can there be to that question?
There could have been other questions. How to make her comfortable for as long as possible? How to alleviate her symptoms as they arose? How to prepare for and recognize death? How to care for her and help her die at home?
But because euthanasia was an option the minute she was diagnosed, there were no other questions that could be asked or answered.
Because of euthanasia, the only acceptable answer to the question of how much suffering was: absolutely none. I couldn't say, That's not my decision to make.
Because there was no way to know when the suffering might begin, the only way to ensure no suffering was to kill before it began.
Because you needed to act before the suffering began, there was no way to avoid cutting off some non-suffering life.
Because of euthanasia, it was more acceptable to do that than to risk a minute of suffering. Better to end a life three months too early than one hour too late.
Four vets had promised Bunny a horrible death. How sure were they, how did they know, what else could happen--these were questions I couldn't ask and they didn't have to answer, because of euthanasia.
I did finally call the vet that day and could not get good answers to my questions on the phone. Did I want to bring my cat in? I did, but what stopped me was the certainty that I would only hear "Put her to sleep". Should I pay $70 for that? What was the point?
I did not go to the vet's. I cried so much I exhausted myself. I lay down on my bed at four p.m. and fell asleep.
I expected her to die that day, and the next, and the next. The vet had not told me anything about how dying could unfold: how long it might take, what I might expect to see and hear, the signs and symptoms and what they meant and what to do. If I had known what to expect, I would not have been afraid of death. It was the not knowing what it looked like that frightened me. I was totally unprepared for death.
Now, I think he was too.
In a euthanasia culture, vets don't need to know the first thing about dying or death--the kind that's not as simple as giving a vaccination. If they--or their clients--never see it, how do they learn? If I could not get my questions answered as to what my cat would experience as she died, what signs to watch for and what to do, what the stages were and how long it would take, was it because the vets did not themselves know the answers?
Bunny lived for a month after developing breathing difficulty. Each day I expected her to die and thanked the universe that she was alive.
On the afternoon of the night that was to be Bunny's last, I called randomly to a couple of "pet loss hotlines" from a long list I'd gotten off the internet. I picked those affiliated with veterinary schools, hoping to speak with at least a veterinary student. The first one that called back was a young woman, not a vet, not a student. She didn't know anything. She was trained just to listen, but I wasn't interested in hearing myself talk. I babbled to fill the silence, wanting to make her feel better about having nothing to offer, feeling like an idiot.
About seven o'clock that night, I thought I heard a meow from under the green chair where Bunny had made her den all this time. I wasn't sure. It came again, more insistent,
loud and low. It was much like the fear meow she made when I put her in a cage to take her to the vet.
Then, though Bunny had seemed to be weakening, to be unable to walk the twelve steps to the litter box without resting, and had rarely ventured out of her den in the bedroom, she made her way out into the living room. For the last two years, even before she'd gotten ill, she'd been content to stay in the bedroom, but now she went out farther than she'd ever been, to the kitchen. But she didn't rest in any one spot. She'd lie down, then get up again, and I watched in amazement as she wedged her way into a closet. She'd never done this before. I remembered my one clue, which one vet had told me months earlier: when animals know they are going to die, they hide. Was this it? She climbed out of the closet, nearly ran to a corner behind an air conditioner where she couldn't be seen. Fear gripped my heart. What else could this mean?
About eight o'clock, I got a return call from another hotline, but this time it was a vet, an oncologist. "I'm so glad you called right now," I said with heartfelt relief. I described Bunny's frightening behavior, I held the phone up so he could hear her meow. Doctor, please tell me, I 'm terrified: is my cat dying tonight?
Instead of answering, as if on cue, he started the euthanasia speech. When I most needed to know about death, I was talking to someone who made a career of avoiding it. His words blurred together, I'd heard them so many times. "You have to look at the quality of life…can your pet still enjoy life?…it's best to put them to sleep when the pet can no longer do what it used to do and what it wants to do…"
If that's the standard for euthanasia, then I should have been put to sleep sixteen years ago.The culture of disability
Sixteen years ago, medical malpractice left me suddenly disabled. My brain was damaged in what was supposed to have been a routine medical procedure. Five years of my life were wiped out, never to be remembered. I was left with a dramatically lower IQ, short-term memory disability, and permanent impairment of higher cognitive functions.
For years afterwards, I wanted to die. Not because I was depressed or crazy. Not because I was in unbearable pain. Because I had lost my value as a human being.
In most cultures, killing yourself because of loss of face, status, or honor, is considered understandable and even acceptable. In some cultures, it's considered admirable, and not killing yourself under those circumstances, disgraceful.
In the tradition of hara-kiri and Enron officials, I saw suicide as the only honorable--and moral--choice. To live and be less than 100%, as one cat-euthanizer put it, was worse than death.
I planned to kill myself. At the same time, I went on living. Six months post-disability, someone asked if I wanted a kitten and I said yes. She was gray and white, beautiful and sweet. I named her Bunny. She was born just as my real life ended and my second life as a disabled person began. In her way, she was my commitment to that future.
I kept acting as if I were going to live for the next few years, years during which I met other disabled people, became part of a disability rights movement, and finally learned the first lesson of disability culture. It was a lesson that was so hard to learn because it clashed with the values I'd absorbed all my life from the culture at large:
The value of your life is not diminished because of what you can't do--or by what someone else (always someone else) thinks of its "quality".
I learned this in stages, by going on with a life that my former, non-disabled self would have seen as not worth living. You see, it is one thing to say, with smug superiority, that while it might be OK for some people you would rather die than…live in a wheelchair, be unable to work, lose your intelligence or memory, need assistance to go to the bathroom…It is quite another to actually find yourself in that position.
By living with disability and meeting other disabled people I learned a way of thinking about life that encompasses all of its limitations and losses and variations, that is nonjudgmental, that acknowledges that anyone can cross the line from nondisabled to disabled in a blink of an eye. After all, nearly everyone who proudly counts themselves as able-bodied and able-minded will learn, at the end of life, to live with losses and limitations. Illness and dying are nothing if not a reminder that disability is not something that just happens to "others", but is part of the human condition. Pain--physical and emotional--is a part of life.
When I had learned these lessons, I no longer felt the need to die, and I no longer felt ashamed for being alive.
Which was not the same as knowing how to live. I had to live differently now. In a word: Adapt. Synonym: compensate, adjust, make up for, accommodate, fit in to a world that now saw me as inferior, useless, disposable. It was and is very difficult, because there's no easy or obvious way to compensate for cognitive and memory disability. Everyone knows you use a wheelchair if you can't walk; but what about if you can't remember where you put your shoes?
What I learned was a way of thinking of creative ways around limitations. Which is why the messages I was seeing from people whose animals had cancer, and the messages from vets, the messages that ended in so I think it's time to put her to sleep, seemed so unfathomable to me.
My cat can't make it to the litter box…So bring the litter box closer to her.
My dog can't jump on the bed anymore…So make her a bed on the floor.
My cat can't get up the stairs…So carry her.
My cat can't eat by herself…So feed her. The response I imagined, It takes too long, it costs too much, it's too much trouble, it's not worth it, is an old familiar song to me now that I've spent nearly half my life disabled.
The second lesson of disability is that when you're disabled, there's always a price on your head. The value of your life is always being weighed: not only against what you produce, but against what it costs to maintain you--accessible streets and buildings, attendant care, health care, whatever. And always there is someone to say you're not worth it.
Ultimately, the idea that different lives, or the same lives at different times and under different conditions, have varying degrees of "quality", and that this "quality" should be evaluated according to the dominant values of a society, leads to a discussion about what should happen when quality becomes unacceptably low. When killing people for their own good becomes imaginable, acceptable, and/or legal, the discussion of euthanasia in and of itself can have a chilling effect on the will to live and on societal estimates of the value of the life of the seriously ill and disabled.
No one spontaneously wishes to die in a society in which her life is valued; nor does suffering necessarily equal a wish to die in a society which does not turn its face away from pain and death.
The disability rights movement as a whole opposes euthanasia in any guise it may take--"right to die", "physician-assisted suicide", do-not-resuscitate orders in advance directives. Our reasons? The past, the present, and the future.Euthanasia for humans
The argument against human euthanasia is that once it is legal, there will be a rapid slide down the slippery slope. People being what they are, its uses will expand far beyond "mercy killing" or "assisted suicide" of patients who are both terminally ill and willing to die. Once you allow people to be killed, it's an easy, straight slide to the bottom of the slope, to "quality of life" killing; and those with the access to the needle or the gas get to define "quality".
Can't happen? But it already has.
While my cat was silently dying of cancer, but before I knew she had cancer, I was working on a book chapter about the Nazi killings of mental patients and other disabled people during the 1920s and '30s. Most people don't know that the Nazis killed disabled (Jewish and non-Jewish) people in a kind of test run for the Holocaust. They tested both technology and public attitudes before concluding that they could get away with mass murder of Jews.
As part of my research I learned that in 1920, before deciding to go ahead with his "euthanasia" program, Hitler conducted a public opinion poll. He asked parents of disabled children whether, and when, they would consent to "a painless shortening of your child's life." Some said yes, due to disability; some said yes, but only if their child was suffering. Only 20% said no, not under any circumstances.
No one asked the children whether they wanted to die.
In 1939 Hitler's Law on Euthanasia for the Incurably Ill authorized killing of people who "desire an end to their suffering due to incurable illness, or who are incapable of productive existence as a result of incurable chronic ailment". That was how steep the slope was; it could be traversed in one sentence.
A mentally or physically disabled person could now be killed "by means imperceptible to him". "Worthless life" or "life unworthy of life", the term invented by a popular German eugenicist, was the name given to those who were to be killed. They included young and physically healthy people with mental retardation and mental illness. Estimates are that at least 200,000 were killed. Very few voices were raised in protest.
As a result, millions of Jews lost their lives.
Today, euthanasia takes the form of "physician-assisted suicide". It's extremely controversial and illegal in most places except Oregon. The euthanasia law in that state had its origin in that state's finding that spending health care dollars on terminally ill and/or disabled people was "inefficient" and that health care needed to be rationed. It did not happen because ill or disabled people were clamoring to be killed. In fact, organized disabled people fought vigorously but unsuccessfully to stop the passage of the law in 1994.The economics of euthanasia
When I saw euthanasia done for the first time and saw how quick it was--less than a minute--I could not help thinking: this is the single most profitable procedure vets can do.
Vaccinations take more time. They require an office visit of more than a minute; they require talking with the owners, taking a history, weighing the pet, etc.
I don't doubt that vets dislike giving lethal injections. But it seems clear that the practice of euthanasia is essential to their bottom line.
One well-known disability activist put it this way: "When you know that America's health-care system is market-driven, why would you put death in physicians' market-driven hands?"
The market for euthanasia is huge: every single cat and dog in America. Every one that was ever born or will ever be born. More than can ever be convinced to come in every year for a vaccination.Bunny's death
I will probably never understand exactly what happened on the last night of Bunny's life. There was a drastic change in her condition that night. She was very frightened. Perhaps she was entering a new stage of dying. How many stages were there, and how long did each last? Stage 1, when her tumor caused no symptoms, had lasted two months. Stage 2, abnormal breathing, lasted for one month. Stage 3, not eating, six days. That was as far as we'd gotten.
Bunny was crying, but I didn't know why. She was restless, pacing, unable to sleep. This went on for eight hours. The cries came more frequently as the night went on.
Expediency played a part in my decision. If Bunny could not sleep, neither would I. Without sleep, I could not function mentally or physically. I knew I'd collapse from exhaustion. There was no one else to look after her. Would I fall asleep and she die alone?
I made some choices which were purely selfish. I wanted it to be dark. I didn't want to wait until daylight. I didn't want to see people on the street. I didn't want them to see me crying. I didn't want to have to explain to the daytime doorman why I carried out a cat in a blue blanket and returned in a few minutes with only the blanket.
I took her to the vet's office. We were the only ones there. I was shocked when the vet showed us into a regular examining room without even giving me a chance to take my coat off. I hesitated. I pointed out to the vet on duty, who was not her regular vet, that Bunny was not gasping for air as he had predicted, but seemed to be in pain. This wasn't the way I thought it would be. Why? She looked briefly at the chart, had no answer. I thought of what the vet had said a week earlier: "She has virtually no lungs left."
All this time I'd been resisting the vets' exhortations for euthanasia. Their disapproval had been so clear that there was a sense in which I had been made to feel that I really was a bad person who really did want to make her cat suffer.
Now see! I wanted to say to them all. Here I am. You were wrong. I am good. I really don't want to make her suffer after all!
It was six a.m. and my brain was beginning to get fuzzy. Bunny, wrapped in her faded blue blanket, was so present to me. She was just my good old cat. She hadn't become an object or a thing. She didn't have that "look" in her eyes. She wasn't distant or different. She wasn't asking to die. She would, I am sure, have preferred to live.
In loving memory of Bunny
Disability Studies Quarterly (DSQ) is the journal of the Society for Disability Studies (SDS). It is a multidisciplinary and international journal of interest to social scientists, scholars in the humanities and arts, disability rights advocates, and others concerned with the issues of people with disabilities. It represents the full range of methods, epistemologies, perspectives, and content that the field of disability studies embraces. DSQ is committed to developing theoretical and practical knowledge about disability and to promoting the full and equal participation of persons with disabilities in society. (ISSN: 1041-5718; eISSN: 2159-8371)