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Refusing to Be Demeaned
All the passages below are taken from the book “Counting on Kindness: The Dilemmas of Dependency” by Wendy Lustbader. It was published in 1991.
A sixty-six-year-old woman with degenerative arthritis decided to give up leaving her apartment entirely, rather than go on enduring an outside world which spurned her:
I walk funny, I know I do. But up here, in my own place, my legs don’t matter. There’s nothing I can’t do for myself. Anyone who comes in and sits at my table is my equal. Out on the street, I’m a crippled old lady, a nothing. You should see how people look away from me. And the drivers. If I don’t make it across the street before the light changes, forget it. Some of them honk and yell curses at me. I’ve made up my mind: here I’m safe and secure. I’ve got plenty to read and plenty to think about. If I really want to see what’s going on out there, I can look out my window.
People impeded by either illness or frailty often feel demeaned by the world around them. Rejections come at them from all directions, from random strangers to providers of medical care. A man confined to a wheelchair observes, “The disabled serve as constant visible reminders to the able-bodied that the society they live in is shot through with inequity and suffering, and that they live in a counterfeit paradise.” 1
Dignity is a solitary attribute. Other people can detract from it, but we have to replenish it on our own. In situations of physical incapacity, self-possession is maintained by literally holding onto oneself in spite of every possible infringement. A man disabled in a car accident claims, “I soon learned that it was considered bad form for me to behave like a normal person in certain situations.” 2
This chapter examines these hurtful reactions and the difficult feat of improvising self-respect in the midst of them. Medical situations are examined first, since ill and disabled people usually cannot avoid these encounters. Social situations are then dissected to reveal their potential for both the demise and assertion of dignity. Finally, the components of self-respect are appraised on the personal plane, where both care and harm from others is most intimately rendered.
An eighty-four-year-old woman describes a ten-minute encounter with her doctor:
I even made a list, so I could remember what to ask him. I wanted to know why my legs get quivery on my trout steps. You know, it’s not like me to stay home all the time. When the doctor came in, right away he started asking me about my medicines. He wanted to know about this and that. Before I knew it, he had to go. The nurse was there, saying he had to go see someone else. He told me about my new prescriptions and said to come see him in a month. I was so frustrated, I could have screamed.
Medical contempt hurts as much as any illness. Amidst pressures to hurry, patients who slow things down are regarded as obstacles. Those who cannot hear or see well, or who ask that information be repeated, or who need to discuss their problems thoroughly are especially dreaded by hurried staff.
In the last few decades, large corporations have been purchasing hospitals, nursing homes, and clinics. The result is that health care is being transformed from a public service to a private business. In The Social Transformation of American Medicine, Paul Starr writes: “The rise of the for-profit chains has, for the first time, introduced managerial capitalism into American medicine on a large scale.” 3 These facilities are in business to make money, and whatever obstructs that purpose is strategically dispensed or eliminated.
Health care is the most crucial product that we purchase, but we do so when we are least able either to insist on what we need or to ensure that what we get is of good quality. It is estimated that more than eighty percent of the money we spend on health care in our lifetimes is spent in the last few months of life, when we are likely to be captive and helpless. 4 Robert Miner, a hospital orderly, offers his observations:
The sad truth about modern medicine is that people who work with patients don’t have time…. [For example] the old man retching on a stretcher in the hall outside X-ray, begging to be transported back to his room where he could at least suffer in private: I had promised X-ray I’d come for him as soon as I moved medication to the intensive care unit. Meanwhile there were surgical instruments waiting to go to the operating room, an intravenous machine they needed in pediatrics…. They are short-handed everywhere in hospitals and the excuse is that modern medicine costs too much to hire more staff. 5
This “old man retching on a stretcher in the hall” was caught by one of the details of hospital care that matter the most: how long we are kept waiting when we are suffering. News reports about staff shortages in hospitals do not make the implications vivid enough for the public outcry they deserve.
Until we are actually receiving medical services, we have few ways to judge the quality of one facility over another beyond what we can see with our eyes. Plush waiting rooms and much-heralded advances in technology seem to assure us that medical excellence will be there when we need it. We cannot see that technology has become more profitable to implement than the more fundamental aspects of mercy.
Hospitals once made mercy their chief objective. In The Care of Strangers, Charles Rosenberg explains that hospitals were originally almshouses where the poor could go to receive care and shelter during illness and old age. Only people without family support came to these early hospitals, which were staffed by nuns and other members of religious orders. The staff usually resided at the facility and stayed on for years. There was little privacy among the rows of beds in the wards and minimal technology practiced by the staff, but the care was generally personal and compassionate. Rosenberg writes:
The modern hospital’s basic shape had been established by 1920. It had become central to medical education and was well integrated into the career patterns of regular physicians; in urban areas it had already replaced the family as the site for treating serious illness and managing death. Perhaps most important, it had already been clothed with a legitimating aura of science and almost boundless social expectation. 6
From almshouses to medical training to money-making ventures represents an immense shift in mission and style of management. Many of today’s for-profit hospital and clinic chains offer staff a salary bonus for taking care of more than their quota of patients per day. In such settings, it is not in a doctor or nurse’s best interests to linger, listen, or desist from using expensive equipment. On the contrary, listening at length to patients’ concerns can ruin a staff member’s productivity score and result in censure from employers.
Listening and explaining, no matter how time-consuming and therefore costly, remain important to patients as they face difficult choices. A ninety-two-year-old woman once grabbed my hand while I was rushing by her hospital bed. She begged me to listen to her, even though I was not the social worker assigned to her case:
Please, please, get these doctors to listen to me. They’re sending me downstairs any minute to stick tubes in me, to see where I’m bleeding. I don’t care where I’m bleeding. Why doesn’t anyone listen? I’m ready to die. I’ve had a good life. Now I just want to lie here, in peace. Please, can you make them understand? They keep coming in here and patting me on the arm and telling me it will be all right, but they don’t cancel the test. Maybe they’ll listen to you, a nice young lady, if you tell them for me.
An expert on chronic illness claims that people with intractable physical problems yearn to talk with their doctors. Above all, he insists, they want their doctors to see more of them than is immediately apparent in a hospital bed or exam room. He writes, “Illness story making and telling are particularly prevalent among the elderly … so for the care giver what is important is to witness a life story, to validate its interpretation, and to affirm its value.” 7
When someone is frightened or in pain, speaking up to this extent is not easy. If a physician talks quickly and uses obscure language, the person is doubly silenced. In Psychological Care in Physical Illness, Keith Nichols bemoans the “inflexible questioning pattern” used by many physicians. He found in his research that such patterns frequently prevent patients from bringing up their own concerns. 8
One strategy patients often use successfully is to write down their questions before seeing the doctor. They then hand over this list when the doctor appears. In this way, patients do not have to struggle to find the right words or to recall questions that were nagging at them earlier. Patients thereby set the agenda for the discussion, not the physician.
Still more important than lists is understanding the implications of the changes that have occurred in mission and staff compensation. We can no longer assume that physicians are our agents, resolutely looking out for our best interests. A philosopher of medical ethics asserts, “Patients will not trust providers who put their own economic gain above patient needs. They will be especially distrustful of schemes that allow doctors to profit by denying care.” 9
When time-management techniques belonging to factories are applied to health care settings, patients feel efficiently processed rather than humanely served. Tasks are given priority over feelings, productivity over kindness. No matter how cleverly the owners of for-profit facilities measure the caliber of care they provide, medical contempt remains more profitable than mercy.
Maggie Kuhn, founder of the Gray Panthers, offers her personal observations about the effects of such changes in the practice of health care:
My brother died after being hospitalized for three months in three hospitals…. I was depressed and enraged by the way in which the whole health care system has been specialized. There was a succession of six different nurses who saw him. Each spent a few seconds— a couple of minutes at the most— but nobody looked at him as a whole person…. It was the nurse’s aides who had more continuous contact with him and who saw to it that he was looked after. How accurate can the reports be when each primary nurse is responsible for an incredible number of patients, with very little time to spend with each? 10
Medical settings tend to be microcosms of the societies that sustain them. Upon returning home from a trip to the Middle East, a woman with multiple sclerosis realized that in America, by contrast, “there is much less tolerance for incompetence or inefficiency.” She suddenly saw the values underlying American intolerance in sharp relief: that self-sufficiency is virtuous, that outcomes must be controllable, that doing is better than being, and that the future is more valuable than the past. She writes:
I have no control over the disease activity in my brain. In and of itself, this is hard enough to accept, but acceptance does come. That acceptance is infinitely harder to achieve, however, when the culture continually— in both small and big ways— tells me I should be in control, that control is possible … I hear constantly that acceptance is passive and weak; to rage and fight would be much more acceptable … If, finally, I manage to accept that I am not independent— responsible for myself, yes, but clearly unable to live autonomously— then I live at odds with the dominant thrust of my culture. 11
People whose physical powers are constricted cannot live by American values, which presume that one is able-bodied and independent. Those who are not self-sufficient cannot control the outcomes of ordinary tasks, let alone their larger undertakings. They dare not invest their self-esteem solely in what they are able to accomplish, and they cannot afford to live for a future that may be more difficult than their present or past. Their strength resides in evolving an individual set of values that bolsters the kind of life they are able to live, rather than the life that others live. A woman disabled by polio as a child explains, “I understood that it was up to me to establish my own system to live by.” 12
Older people who have retained their good health and full physical capacities often find themselves similarly estranged. By virtue of age, most no longer go along with our culture’s preference for the future over the past, and retirement may have hurtled them into days more focused on being than doing. Watching their peers cope with physical problems, they may regard their self-sufficiency as a perishable privilege. In addition to these pressures, everywhere they look aging itself is scorned. A woman in the midst of this struggle writes:
Old is ugly, old is powerless, old is the end, and therefore … old is what no one could possibly want to be. At sixty-nine, I take in these messages from the outside every day, and I have had to learn ways of reacting to all the negative messages around me in order to survive…. In a day of living as an old woman, I reach for all the ways possible on that particular day, in that given moment…. Proving that I’m still strong, capable, sexual, is a response I give to a negative world a dozen times a day. 13
Deflecting disdain on so many levels at once takes considerable stamina. Instead, many older people absorb the contempt and begin to despise themselves for no longer being young. They shrink themselves down to the size of these degrading expectations, taking on an outer demeanor which constrains their self-expression but which is regarded by others as more acceptable for their age.
Older or disabled people who insist on remaining themselves face an exhausting divergence between who they know themselves to be and how others treat them. They feel drained each time strangers respond to them in terms of the category “old” or “disabled.” In The Coming of Age, Simone de Beauvoir deplores the gap she feels at the age of sixty between her inner sense of herself and how strangers react to her as an older woman. She points out, “Old age is particularly difficult to assume because we have always regarded it as something alien, a foreign species: ‘Can I have become a different being while I still remain myself?’” 14
Destructive reactions, such as the tendency to equate old age or disability with mental deficiency, are surprisingly common. In A Good Age, Alex Comfort tells the story of a well-intentioned young senator who gave a group of older people a tour around the Senate Chamber:
He treated them a little like schoolchildren; explaining the legislative process in words of one syllable and shouting in case they were deaf. Finally, turning to one of the group, the Senator asked, “And what used you to be?” The old man fixed a beady eye on him and replied, “I still am.” 15
Self-preservation can sometimes he accomplished in a sentence. Usually, however, the struggle is more protracted and the feelings that are aroused cannot be handled so succinctly. Repeatedly treated as simple-minded, many people begin to question their intelligence and competence. So little regard reaches older and disabled people from the outside world that their inner stores of confidence may slowly become depleted. In The Unexpected Minority, John Gliedman and William Roth assert, “Far more is involved than what occurs at the given moment of an encounter…. Handicapped individuals meet the able-bodied every day…. It is a history of learned inferiority.” 16
Aged and disabled people must constantly find ways to override other people’s inability to see them. Being seen is fundamental to being respected. A man who learned how to project his distinctiveness despite others’ preconceived reactions to his wheelchair observes, “You know after talking with someone for awhile when they don’t see the handicap any more. That’s when you’ve broken through.” 17
The labor of breaking through almost always rests with the stigmatized person. In “Deviance Disavowal: The Management of Strained Interaction By the Visibly Handicapped,” Fred Davis explains that in this effort “the handicapped person projects images, attitudes and concepts of self to encourage able-bodied people to be at ease and carry on with the conversation in normal ways.” 18 Such assertion is an indispensable form of defiance.
A man in his seventies told me what happened when he attended a concert given by a popular rock group:
I was standing on line to get a good seat. A kid in front of me turned around and saw my white hair and white beard. “What are you doing here?” he asked, as if I was from outer space. I said, “The same thing you’re doing. Trying to get into this concert.” I stared him right in the eye. He said, “O.K., man,” like it suddenly dawned on him that maybe an old man can like rock music, too. It hurt. I didn’t have a good time after that. I’ve been going to concerts for years, and no one ever said that before. I felt like I didn’t belong there any more.
At first, this man succumbed to the rejection. He stopped going to concerts and taking his customary walks and bus rides all over town. He started referring to himself as “an old man” and lost the spring in his step. Finally, however, it occurred to him that for every person who made a snide remark or gave him a contemptuous glance there would surely be others who would derive hope for their own future from his presence there. Once he resumed his concert-going, his depression resolved.
Acts of self-assertion do not have to be monumental to be vitalizing. In a nursing home where I worked for a year, one ninety-eight-year-old resident became furious each time aides tried to change her incontinent pad later than 2: 00 P.M. She would scold them vehemently, claiming that they were making her late for the 3: 00 coffee hour. Since they usually completed their task by 2: 30, the aides considered her rage to be both abusive and unreasonable. One day, by chance, I happened to be sitting in the lounge at 2: 30. This woman approached me in her wheelchair, asking me if I would be kind enough to move to another table. She explained:
This is the only table that’s the right height for resting your coffee cup, to be able to sip it without having to pick it up. You see, my hands have a terrible tremor, so otherwise I’d get coffee all over my dress. You have to get here early or you don’t get this table. With my hands being so bad, I’ve got to leave my room by 2: 15 at the latest or I don’t get here on time. Just a few inches is all I get out of each push on these wheels. There’s no way I can get here any faster.
This woman held fiercely to her remaining capacities. She was dependent on staff for assistance in getting dressed in the morning and undressed at night, as well as for getting in and out of the bathroom, but she needed no one to feed her or push her wheelchair. For each of us, there is a limit to the amount of surrender we are able to countenance without losing ourselves.
Ill and disabled people often become caught in perplexing contradictions. A man bedbound with cancer explains:
There I was home in bed, just a terrible burden to everyone. But at the same time I resented them for going on with their lives. I didn’t want them to bother, I really wanted to be alone most of the time anyway, but I still wanted them to take care of me. Isn’t that crazy? 19
Wanting both to be assisted and to be left alone, to be accommodated and to live normally, dependent people may push help away at the same time that they hope others will find ways to make life easier for them. A woman coping with a debilitating illness in her late thirties admits, “I do not wish to be treated as though I am sick. However, I find that I would like people to quietly notice and make allowances.” 20 A man dependent on his wife’s assistance with getting dressed, eating, and turning over in bed at night attests to a “powerful pull backward into the self … [that] becomes compelling, often irresistable.” 21
In Listening with the Third Ear, the analyst Theodor Reik points out that such dividedness is not a problem to be solved, but rather an aspect of the human condition that must be accepted:
Opposite tendencies can coexist in us, feelings contradicting each other live together, and what is true and what false can be confused…. So much lives in us— wishes and their denials, faith and mistrust, appetites and distastes. They change places so frequently that what is fair becomes foul and what is foul, fair. 22
The more independence we lose, the more torn we become by contradictory urges. Outbursts of anger at helpers who are only doing what is necessary is one of the indisputable signs of this turmoil. When success at even ordinary tasks becomes elusive, some people resent being rescued as much as they want desperately to be spared their frustrations. A fifty-nine-year-old man paralyzed on one side by a stroke explains:
Getting my shirt on in the morning is a big thing for me. My wife sits there while I fumble. It’s hard for me to get the sleeve to line up so my arm gets through the hole. It takes her just a second to help me, but if she does I yell at her. And when she doesn’t, I resent the hell out of her. How’s that for a setup? There’s no way for either of us to win.
To accept help is to miss a chance to prevail, and to go on struggling is taxing and upsetting. A woman with rheumatoid arthritis writes, “The moments I still feel raw anger are those when I battle unforgiving mechanical objects—… squeezing a gas pump handle, fighting a screw that won’t budge. Those things remind me of helplessness and they raise a rage. I hate asking for help.” 23
Asking for help is more complicated than it seems, often evoking a host of conflicted emotions. Some dependent people find the mere act of calling attention to themselves abhorrent. Others can bear this indignity but dislike having to spell out exactly what has to be done on their behalf. Almost all tire of explaining, revealing, and excusing themselves, wishing that people would know what to do and would simply do it without having to be asked or reminded. An eighty-three-year-old woman who was forced to give up driving due to a stroke explains:
Every Sunday I need a ride to church. But when I call somebody, I can never tell how they really feel about going out of their way to get me. Some people say “yes” when they mean “no.” I can feel it later on, when I get into the car. They sort of let me know how much traffic there was, or how much earlier they had to leave the house— that kind of thing. It would be so much easier all around if people would just offer once in a while, when they really feel they can spare the time. Asking is a horrible position, for them and for me.
The best assistance is that which is unobtrusive. Helpers who quietly get things done, rather than announcing their efforts, leave a dependent person’s pride intact. The indebted position is not emphasized, and no mention is made of special accommodations. The fact of helplessness then recedes into the background, where it can reside without harming the person’s self-esteem.
The conflict between asking for help and preserving one’s dignity is most intense around the functions of elimination. Once these functions become impaired, they move from the domain of unconcern to utter domination. Worrying about staining a friend’s upholstered couch, or having to be constantly aware of the location of the nearest toilet are concerns that are demeaning by their very intrusiveness. Yet letting others in on these worries may not yield enough support to be worth the embarrassment. In Stigma: Notes on the Management of Spoiled Identity, Erving Goffman marvels at the relentless dilemmas of “information control” faced by disabled people: “To display or not to display; to tell or not to tell; to let on or not to let on; to lie or not to lie; and in each case, to whom, how, when, and where.” 24
A thirty-eight-year-old man with a bowel ailment depicts the large difference that true support can make:
Sometimes I need the bathroom in a hurry. I just don’t get the warning other people get. So I like to be places where there’s more than one bathroom and where people automatically reserve the closest one for me. I’ve got cousins who always use their downstairs bathroom whenever I come over, and they don’t say a word about it— they just do it. I relax at their house like nowhere else, because I don’t have to worry and I don’t even have to ask.
Repeatedly needing to ask for rides, favors, and special adaptations causes many ill and disabled people to feel they must ask for nothing on other levels. Some try to compensate by extending themselves in every other way, such as becoming good listeners who rarely expect others to listen in return. One woman with a disability explains, “I think because of being aware of my particular physical needs and having to ask for concessions and help, I don’t ask emotionally. I compensate by being the Rock of Gibraltar in the emotional department.” 25
Concealment, whether physical or emotional, only produces a lonely form of dignity. A woman in her early sixties found that hiding the downturns in her illness from her daughter left both of them isolated. She writes, “I am torn between a fear of imposing on her, mother leaning too heavily on daughter (as mine did on me), and her obvious desire to have only truth from me.” 26 Separating oneself from sources of comfort and nurturance becomes too steep a sacrifice for pride.
Others go the opposite way and cede their independence entirely, finding that it is easier to give up all personal power than to remain conflicted about retaining it. They cease voicing their preferences, eventually losing their zest for living as a result of their capitulation. Those ministering to such people often long for some show of resistance, or at least for the chance to respond to a clear request. A woman caring for her eighty-year-old mother-in-law observes:
If some parents become cantankerous, she’s become withdrawn, fearful of asking for anything. I’m unsettled by her selflessness…. Now she seems like an empty shell. Although she has the love and respect of her children, which is more than most of us have these days, I don’t want to end up like that. 27
The exercise of influence is essential to retaining both vibrancy and self-respect. Unless we exert control over some aspect of our lives, no matter how mundane or seemingly inconsequential, a significant part of our spirit dies. In his autobiography about his years in slavery, Frederick Douglass describes an incident in which he physically resisted one of his masters, stating, “It recalled to life my crushed self-respect, and my self-confidence…. Human nature is so constituted, that it cannot honor a helpless man, though it can pity him, and even this it cannot do long if signs of power do not arise.” 28
In situations of dependence, power can be reclaimed through many routes. Any strategy that lessens ambiguity restores authority to dependent people. Insisting that their helpers function according to a schedule is better for their endurance than putting up with long hours of waiting. Just as waiting reminds them minute-by-minute of their helplessness, firm plans convey a semblance of their former control over their lives. When dependent people can count on events taking place at a set time, they can anticipate them almost as if autonomy were still in their possession. There is no waiting, no asking, and no infuriating uncertainty.
Other ways of taking back control may be more subtle but just as beneficial. A sixty-eight-year-old homebound woman describes her system for managing the benevolence upon which she depends:
One of my neighbors is full of religion and she just wants me to listen to that stuff while she makes up my bed. Another one just wants me to notice the special things she gets for me when she does my shopping. And there’s one that can’t stand it if I thank her, so I have to act like the treats she brings me are the most natural things in the world. Each one’s different. I like to give them what they want, so they’ll keep being good to me.
This woman survives by remaining attuned to what her helpers expect in return for their kindness. She carefully maintains the exchange, watching to see that each of her helpers leaves satisfied. She derives pride and security from accurately detecting what each is getting out of helping her and making sure that these rewards continue to satisfy them.
Successfully handling the needs and anxieties of their helpers frequently becomes a source of strength for dependent people. A disabled man notes how his forthright requests for aid tend to relieve those who are not sure how to approach him: “Innumerable times I have seen the fear and bewilderment in people’s eyes vanish as I have stretched out my hand for help, and I have felt life and warmth stream from the helping hands I have taken.” 29
Until they arrive at compromises that allow for both self-assertion and collaboration, dependent people are often drawn back and forth on a confusing pendulum of contradictions. They are never sure how much leaning on others is acceptable and how much effort they should exert in their attempts to overcome obstacles and frustrations. A man disabled in his youth by polio writes, “Asking for help has always been difficult … but hardest of all was to ask for something that I knew I could do. In fact, if I could do it, there was a moral imperative to do it, no matter how tired I was or what risk it demanded.” 30
The English language reduces our situation to terms of deficiency when we become ill or incapacitated. In Missing Pieces: A Chronicle of Living with a Disability, Irving Zola writes, “We are deformed, dis-eased, dis-abled, dis-ordered, abnormal and, most telling of all, called an in-valid.” 31 These words depict deviations from the normal, instead of allowing these circumstances their own validity.
A woman confined to her apartment by an inoperable problem with her hips explains:
I still feel vivacious. I can hardly walk across the room, but I wake up in the morning raring to go. I forget that I’m eighty and that my hips don’t work anymore. Sometimes I start getting up off my chair as if I’m really going somewhere and boom, it hits— I remember that I’m a gorgeous dame stuck in a worn-out body. But this is the price I pay to be alive. [111-130]
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