2006 - Vol. 3, Issue 8

My perspective on death and dying, including topics such as euthanasia for pets* and "assisted suicide" for people, has been informed by my own feelings and experiences as a chronically ill person. The recent death of my former service dog, Jersey, has crystallized my outlook.

I subscribe to the disability rights perspective and believe that disabled people and their families deserve the money, services, and other assistance required to lead independent, quality lives. Further, I reject the widely held belief that those who are ill or disabled automatically want to die. Many people who don't know me assume I am miserable when they hear about my life — my multiple diagnoses, my chronic pain and illness, my isolation — they think it sounds horrible. Yet I am happy. I have a meaningful and satisfying life, not least because I have everything I need: personal assistance, medical and adaptive equipment, a safe and accessible home, friends and family who understand and accommodate my disability, a service dog, and enough money to cover all my needs. I find joy in my relationships, my partnership with my service dog, the natural beauty that surrounds my country home, and my writing. In fact, the only time I have felt suicidal in the eleven years since I became ill was when I was experiencing daily excruciating pain from migraines, and I could not get adequate pain relief. Once I did get sufficient pain medication, my desperation dissipated.

Certainly there are disparate viewpoints on the topic of assisted suicide and euthanasia — even in the disability community. There are many people with chronic or progressive illnesses who want an escape plan when the end is near and the physical pain of living is too much, who feel that facilitating their impending death would be a mercy. Further, many Americans, and certainly most nondisabled left–wingers, support what they call "physician–assisted suicide" as an individual right.

The problem is that an essential distinction is not being made between hastening imminent death from a terminal illness and simply living with a severe (and usually non–terminal) disability or chronic illness. Often these two situations are conflated due to fear, ignorance, and hatred of disability. For instance, since 1990, CBS has conducted polls that are ostensibly about the right of the "terminally ill" to obtain "doctor–assisted suicide." Yet the actual question CBS asks refers to those with "a disease that will ultimately destroy their mind or body," which sounds to me like a progressive disability that may or may not be fatal. Overall, the American public's opinion has been "yes," although the recent trend is toward fifty–fifty. However, if the elderly and disabled are removed from the equation (the majority of whom indicate that they want to live), most Americans feel they would be better off dead than disabled.

But is it only disability that our culture fears, or is it the social consequences of disability? Most people with disabilities (PWDs) who commit suicide, or who receive "help" to kill themselves, are suffering from curable ailments, such as poverty, dependence, lack of choice, inadequate pain control, and imprisonment. For instance, I used to email with a man named Bill who had fibromyalgia and chronic fatigue immune dysfunction syndrome (CFIDS — which I also have, and which is not fatal except in extreme cases). I was shocked when I learned that he was put to death by Dr. Kevorkian. "But he was so resourceful," I emailed a friend who also knew Bill through the online CFIDS community. I was thinking of all the information Bill and I exchanged about ways to get food stamps, fuel assistance, and other services in Massachusetts — how we both tried to pass along resources and tips to others with CFIDS and fibromyalgia. I couldn't imagine why someone who seemed so savvy, giving, and committed to making his life work would pull his own plug.

"I think sometimes the most resourceful ones are just the most desperate. They're resourceful because they have to be," my friend wrote back to me.

That really clicked. It is hard enough to have a disability and deal with the limitations that condition imposes on you; but for almost everyone I know, the hardship of the disability itself pales in comparison to the struggles of living in a culture that fears and despises us, that punishes us for our perceived weakness or difference. This ableism takes many forms: it is bowing and scraping to get below–subsistence "benefits" or other services; it is pleading and doctor–hopping, often being treated as criminals, in an effort to get adequate pain management; it is being 28 years old and made to live in our parents' homes, where we feel humiliated and resented by having our family members perform personal care tasks, or an institution, where we have no choices about the smallest details in our lives and where we are likely to be emotionally, physically, and/or sexually abused. In short, it is about lacking independence, safety, freedom, choice, and dignity.

Often PWDs receive the message — particularly from the medical community — that our lives are worthless in very direct ways. For instance, in Texas, hospitals may allow infants who are born with severe disabilities and without private health insurance to die. In Oregon, "physician–assisted suicide" is legal. But even in states where it is illegal for doctors to allow disabled people to die unless they or their guardians have signed a "Do Not Resuscitate" order, it is common for medical personnel to allow — or assist — patients with disabilities to die, whether or not the patient has requested such behavior. In fact, just this past week a fellow disability–rights activist told me that medical personnel "pulled the plug" on her elderly, disabled mother (who did not have a DNR) without even asking my acquaintance, her guardian.

Studies have shown that, contrary to popular belief, changes in attitude about disenfranchised groups usually follow exposure to the minority group rather than preceding it. This is true even when this contact has been forced upon a prejudiced person by legislation or an employer's policy. In other words, people who are homophobic or racist often have their minds changed by actual contact with gay or African–American people; in getting to know their gay or African–American colleagues, neighbors, or family members, formerly homophobic or racist people learn that their new acquaintances are good people. Therefore, I believe that if PWDs were treated as equal citizens, perceptions about disability would also change, and the broader culture, including the medical community, would not dismiss our lives as worthless.

* * *

Much of the ableist oppression that denies disabled people adequate health and personal care and other necessities spills over onto their animals so that both the disabled owner and their pet suffer. For instance, a few years ago I had a disabled friend whose cat got sick. The disease was treatable, but the treatment was expensive. Living on SSI, my friend could not afford the veterinary bills and felt she had no choice but to euthanize her pet. If my friend were not forced to live in poverty because of her disability, she wouldn't have had to make that gut–wrenching decision. Likewise, around the same time, another friend was looking for accessible housing. Her illness caused her to be very isolated, which meant that Jake, her cat, was very important to her. However, when she finally found a unit suited to her disabilities, it was in a "no pets" situation, and she had to give Jake away. If accessible housing were more plentiful, my friend wouldn't have had to decide between homelessness or loneliness. Finally, there is my personal assistant (PA) who dotes on my partner's cat and fusses over my current service dog, Gadget. Yet, my PA told me, he and his wife cannot get a pet. Disabled by chronic illness herself, his wife wouldn't be able to care for a pet that was sick or old. Meanwhile, my PA splits his time and energy between tending to his wife's needs and working at several part–time jobs to make ends meet. If my PA's wife were receiving adequate homecare, her husband wouldn't have to do it all, and then they might be able to get another cat or dog; the wife's PA could even help with pet–care tasks.

Seeing the ways in which my friends' and acquaintance's pets suffered because their owners were disabled led me to think of the ways in which pets in general might suffer from ableist ideology. Specifically, it led me to draw parallels between the choice that many pet owners make to euthanize their pet when it becomes disabled or sick and the attitudes mainstream America holds about "assisted suicide" of disabled people. I am not saying that euthanizing an animal is always the wrong choice. Many factors may come into play: how close the animal is to dying, how much pain it is in, how long the illness has been, and how able the owner is to care for a sick pet. Certainly I know of many people, myself included, who have decided to euthanize a beloved animal. Sometimes these decisions have been reached after months of soul–searching and praying or — perhaps worse — a decision that did not feel like a decision at all, but a giving way to pressure from a veterinarian within a few days, hours, or even minutes of hearing the devastating news that one's companion is ill.

My quarrel is not with individual owners, it is with the essentially universal belief that it is better to "put down" an animal who is disabled or ill than to "let it suffer." Indeed, this ideology is so widespread that people simply assume upon hearing that a friend's dog or cat has died, and it was not as the result of being hit by a car or some other obviously fatal injury, that the animal was euthanized. When I told an acquaintance that Jersey had died this summer, her first question was, "When did you have her put to sleep?" On TV shows such as Animal Cops, the mantra that an animal was "humanely euthanized" is repeated whenever a case involves an animal that is unfit for adoption or too sick to be cured.

My problem with this unthinking adherence to euthanasia as the best, or rather the only, solution is fourfold. First, it feels eerily similar to the majority opinion of "better dead than disabled" when it comes to PWDs. In fact, both for PWDs and some unfortunate animals, our worth is measured in how much we are able to do. PWDs who cannot work usually struggle with acute shame as a result and fear being seen by others as useless. For animals, the penalty for becoming disabled or elderly is often death. I witnessed such a tragedy when a neighbor killed his beagles because they had become too old to hunt.

Indeed, historically and even currently, PWDs have been compared to animals — generally to the detriment of both. When questioning whether people with severe disabilities, especially cognitive or communication disabilities, have consciousness, language, or intelligence, we are frequently likened to animals (and found to be on a par or lacking). Humans, particularly scientists, have constantly sought definitive proofs for the ways in which people are different from (read: superior to) all other animals. Of course, most of these old chestnuts are being cracked — the myths that homo sapiens are the only species to use tools, have language, and experience emotion have been disproved. It is only recently that some are examining, from a positive perspective, the ways in which certain PWDs and animals might experience the world in similar ways. In the book Animals in Translation: Using the Mysteries of Autism to Decode Animal Behavior, Temple Grandin and Catherine Johnson relate how people with neurological disabilities such as autism share with animals unique ways of looking at the world.

Secondly, for both PWDs and animals, our culture recoils at the idea of "suffering." (Except by those who exalt people's suffering, making us out to be particularly noble or saintly, which places us again in the camp of "other.") Overall there seems to be an implicit assumption that suffering is a completely useless state, that there is no meaning in it. Yet suffering is part of life. Nobody escapes it, and many PWDs suffer no more than their nondisabled counterparts. However, if some of us suffer more than others due to our disabilities, this does not mean that our lives, or even our suffering, is worthless. Having suffered with chronic illness and pain, I can say that yes, there have been times when it felt like too much, but there have also been times when I found a way to "enter" my suffering, to be with it, to let it live along side of me. I do not enjoy suffering, but I have gained perspective from it, gotten to know myself better, and found a greater connection to the creative force. If I were offered a cure at the price of forgetting all that I have learned from being sick, I think I would probably choose to remain as I am.

"But," you may be thinking, "you are a person. You can find meaning in being sick or disabled, which an animal cannot, because you have emotions and consciousness — which an animal does not."

This brings me to my third point: I reject the notion that nonhuman animals do not have feelings and consciousness. That animals experience emotion, such as happiness, fear, frustration, curiosity, and hope, has been well documented in books such as Animals in Translation and When Elephants Weep: The Emotional Lives of Animals by Jeffrey Moussaieff Masson and Susan McCarthy. It is also abundantly obvious to any dog owner: when the leash or food dish comes out, the dog whirls and jumps, tail wagging with anticipation. Most cats take off and hide in fear when the dreaded crate comes out, signaling a trip to the vet. When training my service dogs, I learned that they were not just working for food and praise — they showed joy in learning, pride in mastering a new skill, and jealousy aplenty: when I was teaching Gadget to carry grocery bags to the house, Jersey would run after him and steal the bags, tail held high, delivering the bags to the door herself, despite the fact that she did not receive praise or food rewards for her interference. Indeed, I find it particularly odd that the people who are by inclination, as well as vocation, charged with caring for animals — veterinarians and rescue agencies or organizations — are the loudest and most unified voices in support of animal euthanasia to end physical suffering. This, despite Grandin's very convincing written arguments that, for animals, fear is worse than pain, that often animals will go to great lengths to hide their physical pain due to fear.

Finally, I see how — just as with people — a lack of social supports is often the central reason for making heartbreaking decisions. In a society where bereavement and family–care leave are only offered for very short periods of time and only for the loss or illnesses of specified family members, it seems beyond the realm of possibility that employers would offer time off or flexible hours to accommodate an employee's wish to tend a sick or dying dog or cat. Lack of money to pay at–home care bills, lack of physical assistance for lifting/transferring a sick individual or providing them personal care, and lack of understanding and sympathy from friends and relatives who think the "burdensome" family member is not worth the effort of keeping at home — all of these apply to both PWDs and animals. In the case of PWDs, this most often means warehousing in a nursing home. For pets, it generally means the needle.

* * *

Jersey was my first service dog — a loyal, sweet, and devoted companion whose gentleness and eagerness to please even converted people who didn't otherwise like dogs.

Jersey opened up the world for me. Before her, I was homebound. After she — and the mobility scooter I purchased to be able to walk her — entered my life in 1999, I was able to go grocery shopping and make other forays, such as going swimming at the park, making trips to the mailbox (a mile–and–a–half round trip), or venturing out to pick apples in the orchard behind my house. Treks with Jersey meant not only fresh air, scenery, greater safety, and the joy of movement, but an unexpected bonus: I met my neighbors.

The two of us repeatedly defied expectations, so even though at thirteen, Jersey had outlasted the ten–to–twelve–year life expectancy for her breed (bouvier des Flandres), I subconsciously expected us to keep beating the odds. Deep down I hoped she'd live forever.

The first roadblock we overcame was simply finding each other. No assistance dog programs would take me on because my disabilities were too "different." The lone organization that allowed me to apply informed me that bouviers were "attack dogs." I was determined to get a bouvier because I needed a hypoallergenic dog that had the size, strength, and drive to perform the tasks I needed. But even the bouvier enthusiasts thought that as a young, disabled woman I wouldn't be able to handle a breed known for its size, cleverness (which often includes the ability to outthink its owner), and tendency toward stubbornness.

Nonetheless, I persevered and got Jersey as a five–year–old "rehome." When my search for a private trainer ended with failure, I took on the task myself. I taught Jersey, and she taught me — how to be patient, how to motivate, how to decide when it was time to quit, and how to be patient some more. Then, right when we were working smoothly as a service–dog team — Jersey performing retrieves, carting, carrying, and bracing — she developed glaucoma and lost her right eye. Most people told me that she shouldn't or couldn't work anymore as a service dog. The veterinary ophthalmologist predicted as a certainty that Jersey would lose her other eye to glaucoma. Thus a program that paid for medical treatment to keep assistance dogs working turned us down due to Jersey's poor prognosis. I decided to wait and see if Jersey wanted to retire. She didn't. In fact, in September 2000, Jersey and I won a Special Services Award from the Delta Society in their Beyond Limits Awards for Service and Therapy Animals. Furthermore, Jersey never developed glaucoma in her left eye; aside from some night blindness caused by cataracts, she had partial vision until she died this past summer.

Of course, as Jersey got older, she slowed down, and I trained Gadget to succeed her. For the last few years, Jersey lived the pampered life of the retiree. She developed some of the afflictions of canine old age: arthritis in her hips and degenerative myelopathy (DM) — a disease of the spinal cord wherein messages to the nerves and muscles are periodically interrupted, starting at the tail. But she had DM for years, and it only caused her some wobbliness, and towards the end, some dragging of her rear feet and occasional stumbles. Ironically, the day before Jersey died, the vet at the emergency clinic said that she was impressed by how well Jersey moved for a dog with DM. Given our history of overcoming obstacles together, it didn't really seem possible that the end would come so quickly.

On the afternoon of Wednesday, July 26, Jersey seemed fine; twelve hours later she was in severe pain, breathing hard, not eating, and had trouble lying down and getting up. My partner, Betsy, and I rushed her to the vet at dawn, but all bloodwork, x–rays, and sonograms came back normal, so she was put on intravenous fluids, antibiotics, pain medication, and kept overnight. The next day she was eating and moving better and was discharged home. My vet, who adored Jersey and told me that he "treated her as if she was my own dog," said he was "cautiously optimistic" about her prognosis.

However, her improvement was short–lived, and her condition deteriorated once again that night. She wouldn't eat and retreated to hide in her crate — both completely atypical behaviors. I took her to the emergency vet hospital the next morning and asked them to repeat bloodwork and do another workup. The vet thought that maybe the antibiotics were upsetting her stomach and that a longer course of IV fluids, antibiotics, and pain medication would help clear things up. However, this time her bloodwork showed many major abnormalities, indicating end–stage disease, although what the illness was we'll never know — either an incredibly fast moving cancer or a massive infection causing multi–organ failure. A sonogram the next morning showed that Jersey had a septic abdomen — i.e., bacteria–laden fluid was leaking into her abdomen. There was no treatment or cure.

The vet pressured me repeatedly to have Jersey euthanized at the hospital, but I did not want Jersey to die in a foreign place, among strangers. Jersey was a homebody. Her greatest pleasure (aside from earning treats) was to lie on her dog bed in the same room as me. When I went into a different room, she followed.

I made my wishes known to the vet: Jersey was to come home to die. I wanted pain medication for her to make her as comfortable as possible, but I also instinctively knew that for Jersey, Grandin's assertion rung true: Jersey was more upset by fear than by pain. At home, in loving and familiar surroundings, though she might be in pain, she would not have to endure the terror of the hospital and all its strange smells, sights, and noises.

The vet attempted, with compassion and gentleness, to sway me: Jersey was suffering; she didn't have long anyway; immediate euthanasia would be the compassionate way to go — it would be quick, it would be painless. I retorted, sobbing, that I had euthanized my cat Ferdinand, two years ago, and the experience was dreadful, not fast and painless.

When Ferdinand came home from the vet, emaciated, half his body weight, and barely able to walk due to the pancreatic tumor swinging in his belly, he was overjoyed to be home. He purred every time I spoke. Although he barely touched food at the hospital, when I offered him tidbits of turkey from my hand, he gulped them down as if he was famished. I arranged for a vet to euthanize him at my home, in my lap. I thought that would be the best death I could give him. But after he was given the injection that was to "put him to sleep," it took him a very long time to die. His heart just kept beating. It was clear to me that he had not been ready to go, that he had wanted to stay with me longer. I never wanted to do that to anyone I loved again, nor to endure the wracking guilt it caused me.

Jersey had taken care of me, and now it was my turn to take care of her. I wanted her to have a natural death where she had been happiest. Thus, my friends and I made arrangements to bring Jersey home to die. The veterinarian gave Jersey a morphine shot that would last the day and told us to expect Jersey to die within twenty–four to forty–eight hours. My good friends Cat and Cole drove her from the hospital to my house. I was unprepared for how drastically she'd gone downhill in just one night. She had vomited in the car, her breathing was very labored, and she was unable to move at all — even to swallow or blink. Her abdomen was hugely distended. However, Cat told me that when Jersey had seen her and Cole at the hospital, even though she was unable to walk or stand, she tried to jump off the gurney to get to them. Cat said that at that moment she became convinced we were doing the right thing: Jersey definitely knew she was coming home.

To get Jersey from the car to the house, we lifted her into a red "Radio Flyer" wagon. Fortunately, my house is ramped for my wheelchair, so we were able to transport her that way. Nonetheless, it did require all three of us to bring her in: one to pull the wagon, one to lift the back in case of any bumps, and one to make sure that Jersey's legs didn't hit anything as we took turns or went through doorways. Ironically or fittingly, depending on how you look at it, it was a wagon that she used to pull for me. I bought it — and fitted it with shafts — so that she could cart oxygen tanks or other heavy items. One of my favorite photographs is of Jersey carting tomato plants to my garden.

Because of my severe chemical sensitivities, it was not safe for me to spend time around Jersey until after she had been bathed to remove the toxic residues that clung to her from the veterinary hospital. Cat and Cole washed Jersey with tenderness and great haste while I talked to her. Her breathing was so labored, we feared the stress of the bath might do her in, but she pulled through. We got her into my air–conditioned room and onto her dog bed, and I sat and talked to her and patted her. I reminisced with her about some of our experiences together.

At the hospital, Jersey had not eaten, drunk, or toileted for 24 hours. Knowing this, and seeing her tongue hanging out, I used a medicine dropper to periodically squirt water into her mouth. After a while Jersey started to swallow now and then. Then she began to look around and eventually to lift her head. In fact, she was fully cognizant through the very last moments of her life. Soon she started trying to get up and a couple of times even managed to pull herself into a sitting position. We decided that she was trying to get outside to toilet. We loaded her into the wagon and took her out. The moment she saw grass, even before we'd gotten her out of the wagon, she emptied her bowels; she was a "good dog" to the end. She always wanted to do the right thing, to please. She knew what she was supposed to do and soiling in the house was not it. God knows how long she'd needed that release. We cleaned her up and brought her back inside. Her breathing was easier now, and she actually drank water from her bowl. She moved around a bit to find the most comfortable position, settling on her belly.

Throughout the day, Cat, Betsy, Cole, and I took care of her. We also ate and talked and kept an eye on her when she was resting. I could never have done it alone. The strenuous physical activity of the lifting was hard enough. Then there was all the cleanup of towels and pads, and the necessity of making and eating meals. It was a communal effort in every sense. I called my dear friend Heidi to give her an update. I described the situation — both the pleasure I had in knowing that she was happier here than at the hospital (as evidenced by her drinking, toileting, and showing interest in her surroundings) and the physically difficult and less savory aspects of homecare, which I was nonetheless happy to do. "You're providing her with hospice," Heidi replied simply.

It was true. That term put it all into perspective and helped solidify for me why what we were doing felt so meaningful, rich, and important. Sadly, it is too rare for people to get hospice. In the animal world, it is almost unheard of. There are a couple of animal hospice organizations in the US, but they provide care in their own facilities, not at the pet's home, and they are often under siege for going so much against the grain of what is considered "humane." To me, that Sunday in July, we were providing Jersey a death that few people in America could hope for: one with dignity, personal care, pain management, and the opportunity to be at home and among loved ones. Many times I've heard people say, "I don't want to die in a hospital" or "I don't want to die in a nursing home." Of course. We all want to die at home.

The vet could not give us any injectable pain medications since they are controlled substances. This was very frustrating for me because we were told that she could only have oral pain medication if she took it with food, and we didn't know if she'd eat, and if she did, if she'd keep the pills and food down. Again, it reminded me of the comparable conundrum for many PWDs and my own struggle to get pain medication. My plan in bringing her home was to give her as pain–free and comfortable a death as possible. If she was in agony, that would not work. I wanted to pill her before her morning injection had worn off. Since Jersey was interested in drinking, we gave her a dish of soy milk, the maximum dosage of pills, and hoped for the best. She did keep it down.

Eventually Cat and Cole had to leave, and Jersey was showing signs of wanting to get up again, so we took her outside to pee. Because she had been a service dog, Jersey was trained to eliminate on command. I gave her the command to pee, and she did. We brought her back inside, Cat and Cole said good–bye to Jersey — not knowing what the night would bring — and went home.

Betsy and I stayed up, talking to each other and to Jersey, patting her, giving her water. I realized she needed to pee again. We decided to try to convince her to pee lying down on some absorbent pads we'd put under her, or if she refused to do that, to prop her up over a pan. We got her into a squat and I gave her the command to pee, which she did, but we were all too exhausted by the effort of keeping her propped up to continue that way. Still, I knew she had to pee more, so when was lying down again, I gave her the command to urinate again, and she did. Her urine was bloody, but it seemed to have been an important release. I knew her time was near. I cleaned her up and told her that she should just do whatever she needed to do, whatever she wanted to do, that she didn't have to do anything or go anywhere ever again that she didn't want to. I just kept patting her and telling her to do what she wanted and that if she was ready to go, she should go.

Very shortly afterward, her breathing changed and it became clear she was taking her last breaths. She died within a minute or two. I cleaned her up and wrapped her in her blanket, crying all the while. We buried her the next day. I chose a spot where she had saved me from a scary situation: I had gone to pick apples in the yard and then become too exhausted and sick to walk home. With Jersey's slow and steady bracing assistance, I made it to the house and collapsed. Now, at her grave side, my friends and I honored her, telling serious and silly Jersey stories, laughing and crying.

Death isn't pretty, but it's real. Even though it was not pleasant, my last day with Jersey was deeply meaningful, even the details that may seem grotesque to others. In the case of Jersey's last hours, it was abundantly clear to me and to everyone else who witnessed her death that Jersey was best served by dying at home. I hope I am so lucky.

*I use the term "pets" in this essay for simplicity's sake as an umbrella term for any nonhuman animal who is cared for and about by a person, even though I know that many such beings, such as assistance dogs or monkeys, livestock, therapy animals, or other nonhuman animals, are not technically pets. Similarly, I will use the term "animal" for simplicity's sake to refer to nonhuman animals, even though I recognize that people are animals, too, and that the term "animal" — meaning nonhuman species — is in some ways an arbitrary distinction.