Dignity and Health

Nora Jacobson

• Publisher: Vanderbilt University Press
• Year: 2012
• Print ISBN: 9780826518613
• eBook ISBN: 9780826518637
• Topic: Medicine
• Subtopic: Health Care Delivery

In these hard times of global financial peril and growing social inequality, injuries to dignity are pervasive. "Indignity has many faces, " one man told Nora Jacobson as she conducted interviews for this book. Its expressions range from rudeness, indifference, and condescension to objectification, discrimination, and exploitation. Yet dignity can also be promoted. Another man described it as "common respect, " suggesting dignity's ordinariness, and the ways we can create and share it through practices like courtesy, leveling, and contribution.
Dignity and Health examines the processes and structures of dignity violation and promotion, traces their consequences for individual and collective health, and uses the model developed to imagine how we might reform our systems of health and social care.
With its focus on the dignity experiences of those often excluded from the mainstream--people who are poor, or homeless, or dealing with mental health problems--as well as on vulnerabilities like age or sickness or unemployment that threaten to make us all feel "less than, " Dignity and Health recognizes dignity as a moral matter embedded in the choices we make every day.

CHAPTER 1

DIGNITY VIOLATION

A Universe of Human Suffering

An exploration of the meanings of dignity and the forms of its violation . . . may help uncover a new universe of human suffering.

—Jonathan Mann (1997)

He was a strongly built man whose face and hands showed the scars of rough living. He walked awkwardly, with a limp that seemed to throw him off balance. In telling me about his life he described himself as “a traveler,” the son who “seems to stray,” and the “black sheep, per se.” As a younger man, he “felt that society had just ripped a hole in my heart and I just, I gave up for a while.” Time had passed “in an alcoholic haze.” He had crisscrossed the country from the Maritimes to the Mountain West, sometimes working, sometimes spending time in jail. He had quit drinking eight or nine years before and now found dignity in being neat and clean and punctual, and in equal regard, “being treated like one of the others.” We met in a narrow coffee shop in a shabby part of downtown Toronto, near the men’s shelter where he was staying. The shelter was a place where, he told me, “a part of my dignity is being torn away,” because he had been accused of selling the painkillers prescribed for him:

One of the times when you don’t feel like you’re having dignity is like for example right now, like I’m being targeted because with my medication at [the shelter], they’ve taken me from getting it once a day to three times a day, because they said I was selling it. Now if I was seen selling it, how come it wasn’t acted upon at that point in time? The next morning I wake up and all of a sudden there’s these accusations and then they target me and say, “OK. You’re only allowed to have your medication once every three times a day.” . . . I’ve got to keep going up the stairs and go to staffing and ask for it and, you know, I just find that’s not right.

I asked him how “being targeted” affected his dignity:

For me, that makes me look like something that I’m not and that bothers me. It, it’s the key: if it goes around to all the staff, then all the staff are going to look at me in only one way. . . . Even when they’re, they’re interacting with me, they’re still going to be saying in the back of their minds, Can I believe [him] or can I not? He’s a drug dealer. . . . Now it goes from staff, and staff interact with a lot of clients and, you know, people just talk naturally and, and then you start getting all the guys around you saying, “That’s a drug dealer, man.” I mean, like, “Stay away from him,” right? I just don’t think it’s right, and it, it bothers me every day.

It emerged that the new arrangements for getting his medication were resulting in further injuries to his dignity:

And these guys, they’re making it, they’re making it worse. Like having me go up the stairs [which was physically very difficult because of his disability] or they say, “Well, you can get a staff [member] and you can go up in the elevator.” Well, by the time that would transact, maybe half an hour to an hour is going to go by. Now if I had plans to do anything else, they’re going to be disrupted just because I have to wait, wait, wait.

The loss of his reputation among staff members was making it more difficult for him to access the resources he needed:

I have to go an extra two steps than everyone else . . . say, for getting something. Like bus tickets to get my methadone or go to the doctor or whatever. It’s like I have to go see the worker and then the worker’s got to fool around for a little while on the computer and talk to you. Meanwhile, they do this every day, so they know you need it and you have to have it, but instead they’ve got to hold you there and talk to you about it, and it’s like they’re just throwing it at you every single day of the week. . . . Well, look at the ticket book, ’cause we have to sign in to get the bus tickets. You can look in there and you’ll see my signature’s there for the last, whatever, how many days. [But] even then they still give you a hard time and then someone else will come up and bang, “Oh well, I’m going to take care of this guy, give him his tickets.” Boom. He’s gone. And now like you’re still there another fifteen, twenty minutes and, you know, these other people are, you know, listening and they’re watching that you’re having a hard time. Some people are laughing at you because it wasn’t as hard for them, you know? This place, this time is really, really making me not feel well about myself.

He noticed other differences in how people perceived him and how he was treated:

What they’re doing is they’re dangling this in front of me like a carrot and it’s, you know, “OK. If you misbehave we’re going to pull this away.” And, and the first minute they see any kind of different actions out of me they’re going to say, “That’s because he sold his meds and now he doesn’t have his meds and he’s getting all uptight.” Or something like that. Which is not the case. . . . They do this sometimes right out in front of people. They don’t care. The staff will just get right uptight with you and they’ll be loud and they’ll make sure that everybody hears and, and, boom, here’s the circle and where are you now? You’re the bull’s-eye.

Like this man, the people we met spoke all too easily about dignity violation. (Some came to the interviews to bear witness to certain kinds of violations or because they wanted someone to hear about a specific, often particularly painful violation experience.) They had large vocabularies with which to describe the insults and injuries to their dignity—and those insults and injuries were frequent and varied. As one man said, “Indignity has many faces.”

Much of the language people used to talk about their dignity denoted its fragility. As we have seen, in the literature, (social) dignity is described as malleable, relational, comparative, and contingent. It thus can be compromised, offended, affronted, or even lost. It appears to be under an almost constant threat. If the recognition and expression of dignity are presentational (Meyer 1989), so too are the “conduct and ideas” (Schachter 1983, 852) that may violate it. These forms of action and interaction are the social processes of dignity violation. These processes are of different orders—more or less likely to be part of our common experience, more or less shocking in their severity. I begin by describing those most of us have experienced, then move on to those that are less common and, arguably, more heinous. Initially, I talk about each process individually; later in the chapter, however, I explore the ways in which they often cluster.

The first process of violation is rudeness. The men and women we interviewed bemoaned a general lack of civility in social life, reporting that they experienced a pervasive and gratuitous nastiness in many of their casual dealings with others. One man described entering a room and greeting another individual, a stranger: “I just came in. I said, ‘How are you doing?’ You know. ‘I was good until you showed up.’ I wasn’t expecting that. I just said hi to the guy.” Rudeness was common in public places, such as city sidewalks and streets, public transit, and stores. It was often experienced in encounters with individuals working low-wage customer service jobs. The following incident took place in the coffee and doughnut shop that is a Canadian institution:

My girlfriend bought a muffin, a blueberry muffin. And so she gets it out of her bag and it’s half-risen. . . . This side’s high and this side’s flat and the bottom is pointed and all doughy. . . . So I go to take it back to this woman, this Indian woman behind the counter, and I said, “I’m returning this for another one.” “What’s wrong?” “Well, it’s not cooked, it’s not to her satisfaction,” I said. “She doesn’t want it. I just want to return it for another muffin.” And I was very nice. She said, “What kind?” She says, “That is blueberry.” And I said, “Yes, it’s blueberry, but it’s not cooked and she doesn’t want it, so could I please have it replaced with another muffin?” Now I’m getting angry. So she says, “No, you can’t have blueberry.” . . . I turn to my friend and I said, “She says you can’t have blueberry. What other kind do you want?” . . . She said, “I want blueberry.” So I said, “She wants blueberry.” And she starts ripping me. “It’s got [blueberries]! It’s got! It’s got!” . . . I was totally baffled. I was standing like this. And people were, her manager came out, her manager heard her screaming at me. . . . I ended up getting a blueberry muffin, but it was after a lot of, you know.

People sustained injuries to their dignity caused by the paucity of care, consideration, or heed shown by others. This kind of indifference is the next process of violation. A man who rode a bicycle regularly in the city noted, “The traffic out there is crazy. Some of the motorists don’t respect you at all. They’ll just come right out in front of you or they’ll open their car door when you’re zipping by and you can get hurt really badly.” (The resentment engendered by drivers’ indifference toward cyclists may have been a factor in a 2009 Toronto incident in which a bike messenger was killed in an altercation with a motorist; the case attracted special attention because the driver was the former attorney general of Ontario.)

The functionaries who staff the offices of government bureaucracies are well known for their indifference. In settings where health or social services are provided, endless waiting, without explanation or apology, is its hallmark. People who are poor and reliant on a variety of social and health services describe how indifference sends them from place to place in search of someone who is willing to assume the responsibility of doing something: “They can’t be bothered helping you or sending you to the right places or giving you the right, the appropriate resources to help improve your life or whatever, you know. They just can’t be bothered.” The men and women we interviewed called this the “runaround.”

A man who works with homeless people in a midsize city near Toronto described a particularly poignant demonstration of indifference:

This was probably the most well-known homeless woman in the city. . . . She was very ill mentally then; she’d been through the hospital system many times and didn’t want any more to do with it. . . . She had breast cancer and she made a decision herself that she didn’t want any treatment, so she died. She died in a, in a coffee shop, just sitting there having coffee. . . . The staff [member] at the coffee shop called 911 when [the woman] fell over, but unfortunately she said, “There’s a homeless woman who’s passed out here.” So she had to make that 911 call three times over the course of two hours before an ambulance came, by which time [the woman] was dead. Now in the grand scheme of things it probably wouldn’t have made any difference—her body was worn out and she was going to die anyway and she didn’t want to die in hospital, so in one sense it didn’t really matter. But the fact that the young staff [member] that called said “homeless” made all the difference in the world, because the ambulance would have been there in minutes otherwise.

Condescension occurs when an individual feels she is not being taken seriously. Her status as an adult is ignored and every facet of her life is seen to be fair game for cheap advice or control imposed by others. As one person said, condescension comes from an attitude of “I know what’s good for you better than you do.” People described being “talked down to” or “treated like a child.” Conversations in health care settings seem to be particularly fraught with condescension. Nurses “talk singsong,” “like [the patient] is three years old.” One man said, “I’ve had experiences with doctors just saying, ‘There’s something wrong with this. I want you to take this drug.’ [I’ve asked,] ‘Well, what’s it going to do?’ ‘It doesn’t matter what it does. It’s going to help you.’” A woman who was living in a complicated relationship with an abusive partner grew so depressed and anxious that she had to be hospitalized. As she was being discharged:

The two women that I talked with were like, “Oh well, yeah, just throw him out, yeah.” . . . And I said [to myself], this is the words of wisdom that I get from you on my way out the door—oh yeah, just get rid of him and that will be that. And I was, I was really insulted. I felt like, you know, just shut your mouth . . . if that’s your answer for me, that’s your band-aid for my leaving. . . . I hadn’t seen them before, they hadn’t taken any time to talk to me, so they had no idea really. . . . I mean, yes, that’s, that was the best solution but it’s not the most likely one that’s going to happen, that’s not the most likely thing I’m going to do. . . . The coupon they gave me to leave with was worthless. . . . What they said to me was worthless, it was insulting.

The next process is dismissal. People explained that their dignity was violated when their knowledge, skills, perceptions, concerns, needs, or feelings were discounted. A man who described himself as possessing the skills to “build a house with my own hands” told Andrew that his dignity “takes a bruising” when “I’m giving someone information and then, and then it’s pooh-poohed. . . . That’s like the effect of the opposite of being treated with dignity, you know. . . . You almost feel degraded.” A young man remembered an incident in his high school classroom:

We were doing poetry and so [the teacher] read this poem to the class and then asked people what they thought it was about. So I put up my hand and I gave an answer, and she was like, “No, that’s wrong.” . . . I think it was about like a, it was about something flying, like a bird flying. So I said, “Oh, I think that it’s supposed to be about freedom.” She said no. [Another student] said it’s about flying. She said, “Yeah, that’s right.” So I said, . . . “Well, isn’t the idea of poetry being subjective and that, you know, there’s no right answer. It’s each reader is supposed to take what they take from it.” And she’s like, “Well, no, I was looking for the right, real answer.”

In health care settings, serious medical conditions go untreated because doctors and nurses dismiss their patients’ ability to recognize and report accurately when something is wrong. Having just received a disturbing diagnosis, a woman feels dismissed when the doctor looks at his watch before she can ask any questions. Health and social care providers, on the other hand, report that they feel dismissed when clients ignore their advice or decline to follow through with arrangements they have made.

When people are made to feel smaller or lessened by others or when they report having to “lower” themselves because of circumstance, diminishment has taken place. Men and women who were out of work talked about being ground down not just by the fact of being unemployed but also by the process of looking for a job. One woman said, “Most people who don’t have a job, they’re the ones that don’t have a lot of confidence in themselves after a period of time. They don’t get one right away, you know what I mean, and they lose their confidence, you know?” In the offices where people apply for social assistance, “there’s a whole culture, a sort of class attitude about dealing with poor people. . . . That’s where a lot of the indignity is . . . just that person on the front line who has the . . . check and makes [the applicant] grovel to get it.” A man who had spent several months in a psychiatric unit spoke of being diminished by having to lie about feeling better in order to be discharged:

And the key word is lie, because a great many people don’t really believe it. But they realize things to say in order to get out of there. So one of the greatest indignities is that you have to not tell the truth to be able to come out. . . . You’re not true to yourself. You realize that the health care system is not truly a place where you can be yourself. You have to play the game to get the perceived outcome that both you and the hospital want. It’s powerful stuff.

Dignity is violated by disregard; that is, when people are rendered voiceless or invisible. Health care providers are often described as failing to make eye contact with or to address their patients directly, confining themselves to conversations with other providers even though the patient is in the room. A transgender woman spoke of the insult to her dignity occasioned by the Ontario government’s decision to “squash” public hearings on the amendments to the Human Rights Code without considering the testimony of members of her community: “They stopped that debate and one of the members said, ‘We’ve heard everything we’re going to hear.’ And I thought that was incredibly insensitive and that was an infringement on human dignity, and the reason I say it was a violation and, and malicious, intentional” is “because they wanted to achieve a particular goal and they wanted to mandate and they predetermined how those amendments were going to take place.”

A social worker who provides services to individuals who are homeless described the disregard experienced by street people: “We do not look at the person who’s sitting in the corner with their hand out. So just that in itself—somebody to have five hundred people in one morning walk by you, without acknowledging your existence—it’s devastating. It’s completely devastating. I mean, you’re not there. You’ve become invisible, completely invisible, so that in and of itself is a major loss for any person.” And activist Cathy Crowe implied that the invisibility of the individual homeless person is replicated on a larger scale by the increasing invisibility of the entire problem of homelessness: “It’s all normalized now. It’s all normalized that, you know, we give people sleeping bags outside or people have to line up to get into this thing or people have to line up to do that or we only have two showers for two ...

Table of contents

• Cover
• Title Page
• Copyright
• Contents
• Acknowledgments
• Introduction: A Conceptual, Practical, and Moral Inquiry
• 1. Dignity Violation: A Universe of Human Suffering
• 2. The Structures That Deny Dignity
• 3. An Epidemiology of Damage
• 4. Dignity Promotion: The Ordinary Language of Respect
• 5. The Demands of Dignity
• References
• Index