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RESEARCH ARTICLE |
Institute for Health and Aging, University of California, San Francisco.
Address correspondence to Dr. Gay Becker, Institute for Health and Aging, School of Nursing, University of California, San Francisco, Box 0646, San Francisco, CA 94143-0646. E-mail: becker{at}itsa.ucsf.edu
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Abstract |
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Methods. Three to five in-depth interviews were conducted over the course of several years with 38 respondents between the ages of 65 and 91. Both open-ended and semistructured questions were asked.
Results. Respondents demonstrated determination, perseverance, and tenacity no matter how serious their illnesses were. Racism was instrumental in shaping the responses of these African Americans to their illnesses through cultural values that emphasized independence, spirituality, and survival. Respondents demonstrated a resilient philosophy as they faced disabling illness.
Discussion. This research attests to the importance of examining racism in the analysis of how older ethnic minorities live with chronic illness, as it provides the context for understanding the development of culturally specific philosophies about illness. Resilience, as a culturally specific philosophy, is an important adjunct to chronic illness management in later life, and more needs to be understood about the dimensions that shape it by cultural group.
THE EFFORTS that people make to persevere in the face of major physical impairments as they grow older have received limited attention in gerontology (Becker, 1994
, 1997; Deppen-Wood, Luborsky, & Scheer, 1997; Kaufman, 1988; Luborsky, 1995; Rubinstein, Kilbride, & Nagy, 1992), reflecting the gerontologic trend to focus on the decrements of aging as people grow older while de-emphasizing the resilience that people often demonstrate in old age. When attention is given to how people manage illness and frailty in later life, most work focuses on White samples, with little attention given to members of ethnic minorities (Jackson, 1991). In particular, the day-to-day illness experiences of older African Americans have received a minimum of attention (Becker, 1997; Samuel-Hodge et al., 2000). Jackson (1991) observes that the type of data needed to assess the adaptability and resilience of African Americans has been lacking, whereas Williams and Wilson (2001) note that research on minority aging has focused on pathologies and deficits and has given little attention to the resources and cultural strengths within minority communities (although considerable work has been done on African Americans' cultural strengths) (Jackson, Chatters, & Taylor, 1993). The philosophy of older ethnic minorities about their illnesses is an important area of inquiry.
How ethnic minorities handle illness and infirmity in later life may be related to how people sustain themselves in the face of racism. Although the gerontology literature has given increased attention to the health and well-being of older ethnic minorities in the recent past (Jackson & Sellers, 2001; Markides & Black, 1996; Williams & Wilson, 2001), scant attention has been given to how discrimination throughout the life course may affect how older people live with chronic illnesses in daily life. Racism is the oppression of a social group on the basis of skin color or ethnicity. The most common type of bias in society is unfair treatment based on race (Kessler, Mickelson, & Williams, 1999). African Americans and other ethnic minorities report much higher levels of racial and ethnic bias than Whites (Williams, 2000). Jackson and Sellers (2001) note the stressor role of prejudice and discrimination across the life course. Williams and Wilson (2001) observe that racism is persistent and identify many gaps in knowledge about the intersection of racism with aging, health, and well-being.
Racism is not only germane to gerontologic discussions about ethnic minorities, it is a central factor in shaping older ethnic minorities' life experiences (McKinney, Harel, & Williams, 1990). For example, although African American elders are the grandchildren and great-grandchildren of slaves and have been the recipients of the most extended racist experiences of all age groups, that history is infrequently acknowledged in work on older African Americans (Krause, 2003; McKinney et al., 1990). Research that specifically addresses the effects of racism and disparities on older ethnic minorities' health has been modest, and the emphasis has been on service delivery (Brotman, 2003; Dunlop, Manheim, Song, & Chang, 2002; Gornick, 1999; McBean & Gornick, 1994; Rubin & White-Means, 2001; Wallace, 1990; Wallace, Levy-Storms, Andersen, & Kington, 1997; White-Means, 2000).
Some gerontologists suggest that inequality has been central to conceptual development in the field of ethnic minority aging, however. Markides and Black (1996) cite the volume of work that has explored the double jeopardy hypothesis (which postulates that aging has greater negative consequences for members of ethnic minority groups than for Whites because ethnic minorities face the burdens of aging as well as those associated with ethnic minority status) (Dowd & Bengtson, 1978). This hypothesis has been criticized extensively (Jackson, 1985; Markides, Liang, & Jackson, 1990), and the persistence of inequalities between African Americans and Whites throughout the life span has been found (Ferraro & Farmer, 1996). Burton and colleagues (1992) note that the double jeopardy hypothesis has done little to advance the field because of its emphasis on between-group differences at the expense of studying within-group variation and the unique cultural, ethnic, and racial factors that influence the aging process.
Phenomenologic perspectives about embodied experience can provide important insights about racialized experiences as well as day-to-day illness. Embodiment is the central construct of phenomenology; it refers to being, that is, to living through the body (Merleau-Ponty, 1962). The body is the medium through which people experience their cultural world (Merleau-Ponty, 1962, p. 146). Bodily experience can be seen as affected by the continuous, moment-to-moment racialized world in which people live out their days. Racialized experience begins with the most intimate sphere, the body, and widens out in all directions. People muster both inner and social resources to combat racism. In this article, we examine older African Americans' efforts to live with life-threatening chronic illness by examining philosophies about illness that emerged in research on how older African Americans live with their chronic illnesses in daily life.
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AFRICAN AMERICAN CULTURAL PERSPECTIVES |
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; Mullings, 1997) and is recounted in both historical and contemporary writings as well as in other forms of cultural expression. African heritage, cataclysmic disruptions caused by slavery, ensuing historical eras such as Reconstruction and Jim Crow, and continuing racial oppression have all reinforced an emphasis on overcoming obstacles against all odds (Dilworth-Anderson et al., 1993; Mullings, 1997; Peterson, 1997). The resulting values have been characterized as a "survival arsenal" (Myers, 1982), encompassing social institutions such as the family and religion (Dilworth-Anderson, 1992).
Cultural history is central to how African Americans approach encroaching illness and death. Slavery centralized death because of the high proportions of people who died in being captured and transported to the United States as well as subsequently during slavery (Jackson, 1972; Markides & Mindel, 1987). Death, especially violent death, has been a central theme in the literature (Kalish & Reynolds, 1976) and is often juxtaposed against themes of survival and community. Holloway (2002, pp. 7–8) suggests that death and dying have been as much a part of Black identity as have ways of living: Notions of racial memory and racial realization are mediated through a veil of death.
Health and religion have been closely aligned since enslavement. Fett (2002, p. 198) notes that the healing system that evolved reflected spiritual power in action; the view of health that emerged was relational, linking the well-being of the individual to the health of the community of slaves and the community to its spiritual life, culminating in a collective form of self-reliance. Consequently, religion has been closely linked to themes of survival and overcoming adversity; its importance has been widely recognized because of its ability to address itself to everyday problems of human existence and survival (Taylor & Chatters, 1991; Williams & Wilson, 2001). African American churches are considered a unique social entity because they were developed by an oppressed group that was refused access to the institutional life of White American society (Morris, 1984) and were built, financed, and controlled by African Americans (Drake & Cayton, 1945). The church has been a critically important institution, called on to fulfill a wide range of functions including health, education, social welfare, civic duties, and business enterprises, and has served as an outlet for social expression and a refuge from discrimination and racism (Streaty Wimberly, 2001; Taylor & Chatters, 1991).
These cultural themes directly bear on the experience of chronic illness. The concept of John Henryism, developed to characterize a cultural ethos of overcoming adversity through endurance, self-determination, and hard work, has been applied to hypertension among African Americans (James, 1994). James (1994, p. 167) identifies the protracted struggle of African American men and women to free themselves from pervasive and deeply entrenched systems of social and economic oppression and suggests that the health costs of prolonged struggles with adversity can be high (James & Thomas, 2000). Mullings and Wali (2000) have developed a similar construct, the Sojourner Syndrome, based on the story of Sojourner Truth, to represent a behavioral strategy for survival used by women, involving extraordinary role responsibilities. These behavioral strategies have important health consequences, while the constructs have direct applicability for research on the experience of chronic illness.
Examining the experience of life-threatening illness through the themes of survival and overcoming adversity highlights how African Americans' experiences of chronic illness reflect racialized experience. In this article, we examine the resilient philosophy of older African Americans who were living with one or more chronic life-threatening illnesses. The purpose of the study was to explore how people lived with chronic illness on an everyday basis, and philosophy of illness was one component of the study. The illnesses studied were life threatening, and the majority of respondents had had at least one acute illness episode that posed a clear threat to their lives. Although factors such as mutual aid were important in illness management (Becker, Beyene, Newsom, & Mayen, 2003), underlying philosophies about illness were key. Efforts to overcome the adversity posed by their life-threatening illnesses were recurrent themes in this study.
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METHODS |
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The criterion for entry into the studies was the presence of one or more chronic illnesses. The sample reflected a range of illness severity from mild to severe. The majority of the sample had more than one chronic illness: 23% had one, 37% had two, 25% had three, and 15% had four or more illnesses. The most common illnesses were diabetes mellitus, heart disease/hypertension, asthma, and arthritis. Respondents in this community study were recruited from a variety of sources in two urban counties between June 1994 and June 2001: 42% from clinics and home care services, 19% from participant referrals, 12% from field contacts, 10% from flyers, 7% from senior centers, and 5% each from hospitals and religious organizations. Three additional ethnic groups studied are omitted from this analysis to focus on patterns particular to African Americans and because findings about religiosity, illness, and death for two of the groups have been reported separately (Becker, 2002). The study protocol and consent form were approved by the Institutional Review Board, Committee on Human Research, University of California, San Francisco.
Following key tenets of the in-depth interview approach (Rubinstein, 1987), all respondents were interviewed three times in a 1-year period by the second author, who is African American. Several years later, those still living were reinterviewed a fourth and fifth time. Interviews were semistructured with many open-ended questions, lasted for approximately 1–2 hours, and focused on people's health, their experiences with their illnesses, health practices, and access to health care. Each interview was tape recorded and transcribed verbatim. All but one respondent was born in the United States, and all were interviewed in English.
Qualitative content analysis was used extensively (Clark & Anderson, 1967). Research questions that drove the analysis for this article were as follows: What cultural factors influence philosophies underlying chronic illness management? How are they manifested? A specific analytic procedure was followed: Core categories that reappeared in the data repeatedly were identified and compared with other emergent categories, a process that emerges out of ongoing reading and analysis of transcripts. For example, a core category might be "illness as a crisis." Out of these preliminary core categories generated from meanings in the data (Mishler, 1986), an in-depth process of code development was followed: Selected transcripts that appeared to reflect core categories were read by the entire team to generate consensus in coding categories. Codes are highly discrete categories. Each code is a very specific topic that appears in the data. The research team read transcripts of respondents whom they did not interview and met repeatedly to develop consensus about core and emergent categories and the relationships between categories, which led to the development of codes. Successive phases of trial coding were performed until a 
95% level of agreement was reached by pairs of coders. A coding lexicon was developed, and the entire data set was coded for specific topics using QSR NUD*IST (Scolari, 1997), a data-sorting software program, resulting in > 100 discrete codes.
Analysis of data coded as philosophy, autonomy, spirituality, resilience, and discrimination indicated that philosophy of illness encompassed all of these codes. Although a number of other coding categories were also reviewed, such as recovery and illness experience, these other codes emphasized illness events and not philosophy of illness. Although a code is not necessarily a theme, it may emerge as one if it demonstrates its importance in further analysis. Because it has been identified as a worthwhile area of inquiry in an earlier stage of analysis, the potential of a code to be elevated to a theme is a relatively frequent occurrence and can be seen as validation of early insights in the data analysis process. An example of a code that has not become a theme in this research is "recovery." Recovery describes a process; within this process, specific themes may emerge. As a code, it sorts the data on recovery, and themes within this topic may then be identified.
Following an intensive analysis of specific codes identified above, a case-by-case narrative analysis was then conducted, in which a close reading was conducted of each interview for (a) the repetition of specific words and phrases and general thought patterns, (b) the structure of the overall story, and (c) the topics that dominated respondents' statements as well as topics that were not raised at all (Kaufman, 1986). Narratives, which can be viewed as cultural documents that describe bodily experience (Becker, 1997), are the stories people tell about their experiences and provide important insights into people's perspectives on those experiences. Narrative analysis, which emphasizes the topics that dominate respondents' reports and the way they are addressed, leads to the identification of themes across the data set. Statements about perseverance and the relationships between illness, healing, religion, discrimination, and autonomy were closely examined. The narrative analysis also served as a check on coded data (e.g., When statements were read in the larger context of the interview, did they have the same meaning? Did each narrative as a whole portray the themes identified as most salient for philosophy of illness?) and showed linkages between various statements by the same respondent. Coded data and the narrative analysis yielded the same themes.
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RESULTS |
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; Becker et al., 2003). Here we focus only on the factors that appear to most strongly influence philosophy of illness for this group of African Americans. Themes of racism, religiosity, independence, and resilience were pervasive in the data. Comments about racism, inequality, and prejudice recurred throughout the data, as did complaints about institutional structures such as low-income housing and the health and welfare systems. More than 80% of the sample reported some difficulty accessing care. Respondents questioned treatment they viewed as indifferent or rude and questioned the underlying causes of problems in the various institutional structures that they utilized. They repeatedly affirmed their equality.
Almost everyone was Protestant. The most common denominations were Baptist, Methodist, and Pentecostal. Koenig, McCullough, and Larson (2001, p. 18) define religion as an organized system of beliefs, practices, rituals, and symbols designed to facilitate closeness to God or a higher power and to foster an understanding of one's relationship to others, whereas they define spirituality as the personal quest for understanding answers to ultimate questions about life, meaning, and one's relationship to the sacred. With only a few exceptions, everyone was deeply religious. Respondents believed that a strong faith in God would see them through the course of their lives. Many read the Bible daily, and if homebound they listened to church services or gospel music on the radio or on television. They gained much solace from their relationship with God. Determination to recover from acute episodes of illness was bolstered by spirituality. Respondents described how their spirituality enabled them to deal with specific illnesses. The deep belief that people held that God is in control reassured them as they dealt with harrowing acute episodes of their chronic illnesses.
Almost without exception, respondents testified to their high degree of autonomy and repeatedly pointed to their independence. Almost everyone lived in segregated neighborhoods. The majority of the sample lived alone in homes they owned or in rented apartments. A few people lived in senior housing or rented a room in someone's house. Without exception, respondents were fiercely determined to stay in their own homes. As reported separately (Becker et al., 2003), respondents wanted to remain in charge of their lives, resisted family members' efforts to alter their autonomous living arrangements, and viewed themselves as participating in a mutual aid system in which they saw themselves as primarily on the giving, rather than receiving, end. The independence they subscribed to was one aspect of a philosophy of resilience that incorporated various components such as keeping their minds active, looking forward, remaining busy, engaging in some form of work or self-betterment, or giving to others in some way. They repeatedly attested to their ability to rise above adversity and carry on, a lifelong approach that continued unabated into old age.
A phenomenologic approach is particularly appropriate for understanding the philosophies that people bring to their experiences of illness and infirmity. In this article, we use a case study approach to illustrate the complex ways in which the four themes of racism, religiosity, independence, and resilience intertwined in respondents' narratives as they described what was meaningful in their lives. These cases have been chosen because they are representative of the sample in terms of these themes yet reflect a range of socioeconomic status and life experience. There were no exceptions who espoused different philosophies. Respondents' statements reflect an overall philosophy shared by everyone in the study. We have drawn on the longitudinal component of the study in these cases to show both continuity and change in people's philosophies over time. In the interviews, respondents were queried about illness events and their response to those events. They were also asked questions about independence and about their philosophy for living with illness. They were seldom asked specifically about either racism or religiosity. Those topics were volunteered by respondents when they were asked if they had particular philosophies about living with their illnesses.
Racism and Chronic Illness
Experiences with racism, both past and present, were pervasive. Not being told about the availability of specialized medical treatments was a particular source of anger in the face of life-threatening illness. The case of Mr. P illustrates how the four themes of racism, spirituality, independence, and resilience are interwoven. Mr. P, born in Texas, came to California as a small child. A 65-year-old retired Pentecostal minister, he was a middle-income college graduate who was married and had three children. He was working on a master's degree at the time of the interviews. He had had hypertension for many years. At the time he was interviewed, he was frustrated by how much his health intervened in his daily life because he was on dialysis:
I usually go dialyze at 6:00 in the morning. And then I come home, and now I'm weak when I get off of the machine. So usually I come home, I rest for a couple of hours, and then the small chores, I do those. But I can't mow the lawn no more. I go shop, and that's an ordeal. It used to be just a breeze. I know that you don't get any better on the machine. All it does is it alleviates some of the problems of your body. But it doesn't help, you know, it just extends and puts off, and you're growing weaker and weaker.
In this statement, Mr. P makes it clear that he recognizes that while dialysis is postponing his death, no improvement in his condition can be expected. The interviewer commented that Mr. P had mentioned transplant before and asked if he was a candidate, to which he responded by describing the history of his problem. No physician had ever mentioned the possibility of a kidney transplant to him. His wife had first volunteered to donate a kidney 6 years earlier.
Yes, I'm on the list. The thing that surprised me greatly when I first went on [dialysis] was that my wife offered [to donate a kidney] and they acted like she hadn't said nothing. That was six years ago, they said it has to be a genetic family member, some member of your family. That's what they told her at the time. And then I had so many transfusions until my blood is not my blood anymore. And when they try to match the kidney and the bloodline in my blood is just destroyed. So they told me, "Unless we find somebody that has had as many transfusions as you have, then transplanting is out."
He viewed physicians' inaction as racism:
I question why they wouldn't accept my wife's kidney or why they wouldn't explain. Because she offered before I had any transfusion period, and the blood was fine. They didn't even test her. They didn't do anything, period. Now the kidney foundation is looking into it. It really vexed me. I didn't question them, but now I shall.
This experience led him to question the depths of racism in medicine:
It has affected me psychologically, it has affected my outlook, and I don't mean to be and sound prejudiced, but it has affected my outlook on education and society. And their [physicians'] thinking and everything when it comes down to my people [African Americans]. I just don't have no trust in that system. The doctor I have now, I like him. But the rest of them, they just expect you to take what they say because they said it, without any explanation.
Mr. P subsequently became very ill. He got an infection that was related to dialysis, and three operations were done. He felt he had been close to death. When people in this study had near-death experiences, they viewed their recovery as God given. Six months later, recently discharged from the hospital, he said, "When I came out, I prayed and asked the Lord. I don't have any confidence in nothing they [physicians] got no more because I've tried what they said, and it was supposed to work and it didn't. I feel better. So I guess it was the Lord. It was the Lord." He described his belief that his spirit was healed: "I shall be brand new. I shall be healed. The Lord—I've claimed my healing already. It just hasn't manifested itself. But I'm getting better, I'm getting stronger. He's doing things by degrees. As my faith grows and I understand, I get better. I'm beginning to claim what I know is mine."
Asked if his view of independence has changed with changes in his health, he said,
To me, independence is that you do what you want to when you get ready. And when you can't help somebody else, you can't help yourself, or you don't help yourself. You've got to share. Within the last month it has become very, very important to me to set a goal, long range, short range, and know you can do it. And then you figure out the method and the means and the way you're going to do it. And don't let nothing and nobody get to you from where you're going and what you want to do. For the first time in my life I've considered this. But when I look at it, it goes right back to God's plan. Everything He did, it was done by plan. It was nothing haphazard. So I know there's nothing you can really do without a plan.
Mr. P enumerated his plans for the future:
Five years from now, I want to get my wife a new home. I want to pay for it, you know. And then, medium range, in 2 years, there are certain things I want to do. And then in the short range, 6 months, I want to achieve something that is not out of sight but I can do. And I shall be persistent and consistent in it. All I ask, Lord, is give me strength and let me work at it 'cause You give it to me. I'm happy about it. I am excited, I have never felt this way before.
Mr. P concluded, "This sickness, I don't even care about it because I know that I can control it, and I'm working toward that."
Mr. P, feeling cheated of a new kidney by physicians he considers racist and concerned that he is growing steadily weaker, critiques the medical system and questions the actions of those who denied this opportunity to him. Recovering from a near-death experience, he affirms his religious faith and, building on the idea of God's plan for people's lives, develops new plans for his own life. To him, independence means doing what he wants when he wants to and not being derailed by others in carrying out his plans. Reasserting his autonomy and persistence, he nevertheless calls attention to an ethos of sharing with others.
Equal and Independent
Independence was a critical factor in the stories of almost everyone in the study. The desire to be autonomous was pronounced and recurred continuously in Mrs. H's interview. Mrs. H, an 88-year-old middle-income woman who was born in Texas and attended high school there, moved to California as a young woman. At the time she was interviewed, she had heart disease and had had a series of falls. She lived independently in the home she owned, refusing her daughter's many offers that she give up the house and live with her. She navigated around her house by holding on to the walls and, after a couple of hospital stays, employed part-time helpers to shop and do housework.
Mrs. H described her lifelong approach to dealing with racism: to remain dignified at all times. She described how, in earlier years, when she was trying to rent an apartment, no one would rent to her:
I went to rent a place, and she said, "You're a Negro." I said, "Yes, I'm a Negro." She says, "Well, we don't rent to Negroes." I said, "Well, that's your prerogative." When I told my girlfriend, she says, "Well, I would've called her anything else I could say." I said, "Then she would say, ‘That's why I don't like Negroes.’" I let her disgrace herself by letting her keep on talking. I was dressed up. You used to have your gloves, you didn't go downtown with jeans on, with your butt sticking out. No. You dressed up. You looked good. We were ladies. If you went downtown to eat or for the little places we could eat, whether we could eat there or not, we would dress up to go to the store.
Mrs. H had a long work history that she was proud of:
If I hadn't went to [department store], made that job for myself [as a cleaner], I wouldn't be getting my Social Security now. I wouldn't be getting as much Social Security as I do, and I'm able to be alone and independent. I own my own home, you know, and I'm thankful I can do it because it makes me independent.
Mrs. H is proud to still be independent at 88, but she has always been an independent woman:
I retired from [department store]. I went to beauty school. I don't let no grass grow under my feet. So I left [department store], and I was sitting at home. I wasn't doing nothing. I thought, "It's not enough to be here at home just cleaning." I thought, too, "I can look to the future. I can look ahead. What if something happens to him [husband], what am I going to do? I won't know how to do nothing." I wanted to know how to do something else, and I didn't want to cook in nobody's kitchen. I was sick of waiting on White people, you know what I mean? "After the football game is over, you can go home," and all that kind of stuff. So I decided I'd go to beauty school, and my husband said, "You've done worked hard enough, why don't you stay home and rest?" I said, "That's not enough to do." So I started, and I opened my own shop.
Mrs. H belonged to no particular denomination. She described God's constant and pervasive presence, a belief to which almost everyone in the sample subscribed. She defined religion as being embodied in the moral person:
I feel like God is everywhere. God don't see big shots. He just sees individuals. Because we are all God's children. And whatever your religion is, that ain't what's going to take you up to heaven. It's what you are within yourself. Whether you're Baptist, Catholic, Presbyterian, or what That's just a name, see. Religion is what you do and how you treat people.
In recent years, Mrs. H has been incapacitated, first by hip surgery and more recently by her knees bothering her. Six months after her initial interview, Mrs. H reflected on her life experience:
I thank God for the experience that I've had and I'm thankful that I was able to kind of look ahead. I'd listen. I didn't tell you I didn't make some mistakes. We all make mistakes. But you don't wallow in mistakes you make. You keep on going. That's the progress of growing. That's the way you grow. Just like building a house. You just can't run around with your brains sticking in the air and don't know where they're going. I might have it in my mind that I can do a thing. First I've got to try it. Then after I try it, then I can see that I'm successful.
One year after she was first interviewed, Mrs. H was asked if her health affected the way she saw herself:
No. I don't let it affect it. Not that I don't realize that I am getting older. Everything breaks down. I would rather it be my limbs than my mind. As long as my mind is good, I am a whole woman. Because you can sit in a wheelchair and do a lot of things. As long as you keep your faculties, you can keep up with the times. I do absentee voting. You see I have my ballot. I will be able to vote. Somebody just has to mail it for me. My generation fought for you [interviewer's generation] to be able to go to the polls. And you [younger generation] are going to sit on your butt and not go. I just think that is silly.
Asked how she felt about this time in her life, she responded, "I have no regrets. Life is what you make it. I know how old I am, but you know, you are as old as you feel, and that is why I read a lot. Because as long as you keep your mind, you are okay. When you let your mind stagnate, that is when you mess up."
Mrs. H demonstrates a passionate conviction about the importance of independence and personal growth. Forward looking throughout life, Mrs. H believes that morality is embodied in equality. She demonstrates her belief in equality through stories of discrimination, by becoming an independent business owner instead of going to work as a servant for Whites, by stating the need for African Americans to exercise their voting rights, and in how she envisions organized religion. At 88, she is still looking ahead, illustrating her resilient philosophy of life.
Equal in the Eyes of God
A lifelong struggle against adversity was a dominant theme in this study, as was the ultimate affirmation of equality: that all people are equal in the eyes of God. Ms. L's interview epitomizes these two themes. Ms. L, an 87-year-old, low-income single woman who had no children, was a cook until forced to retire in her 80s because of her health. She was born in Texas and came to California on her own as a teenager, leaving home because she was tired of working in the fields. She had little schooling: "I didn't get to go to school. But the baby girl [sister], Mama sent her to school, sent her to college." She worked as a cook throughout her life, and in old age she continues to cook for enjoyment, serving meals to friends who live in her assisted-living building. Mrs. L has heart disease, diabetes, and stomach problems. She was recently in the hospital and had an altercation over the food she was served that she viewed as racist:
They bring them cold potatoes in there, that cold chicken breast chopped up there, and it had no taste to it. I said, "What do y'all bring?" Because at the hospital, they talk about colored people got all this and so much of this. Well, no, it's not quite like that. But this old prejudice mess is gonna be here among us as long as we live. Yeah, some places you go to, you have more places to sit and eat than other people, but that's not the point. The point is, we are here just like White people. God didn't make no distinction when we come in this world, but it's one thing they [Whites] can't do nothin' about. They die right along with us.
Recently, Ms. L has become weaker, making it hard for her to get around. Since then, she has stayed close to home. A Baptist, she listens to church services of various denominations on the radio:
You got to have faith. I don't go to church but I listen to church every Saturday and Sunday night, 'cause I can't—my doctor don't want me to get in no crowds and things like that 'cause if I get in a crowd I'll pass out. It's the reason why I give that job up in Reno. I worked up there 8 months. And I got to the point every time I'd go up there, I'd get sick. I went to see the doctor and he said it was the altitude. Too high for me. Yes sir, I got back down here in a hurry.
Ms. L, asked to describe herself, described how her top priority was to look out for herself and get her needs met:
I get plenty of rest and I eat what I want. What I ain't got, I'm gonna make some kind of way to get it. But I try my best to have what I want. Because I look out for myself. ‘Cause see, I get to thinkin’ about how I come up, a whole lot of things other children had that I didn't have. So I try to get all those things to workin'. I try not to worry about this, that, and the other.Asked what she thought had got her to age 87, she said, "I love to work. I think work is what kept me alive. I get up here in the morning. I don't come out of my bedroom til I made my bed. We was taught that. I'm gonna show you a quilt I quilted. [Showing the quilt:] I quilted this last year. I just worked on it by degrees. It took me about a month. I don't let nothin' worry me. Nothin'."
Ms. L, independent since the age of 13, continues to stay busy with handiwork and cooking even when she can no longer get around so easily. Focused on industriousness and productivity throughout her life, that ethos continues to sustain her at 87. Embedded in her strong faith is the idea that God makes no distinction on the basis of color. This belief is central to the ethos of equality she subscribes to. Remembered hardship is one component of her determination to have all her needs met in old age.
Education, Equality, and Independence
Mr. W, 84 years old, was born in Oklahoma and has lived in California for the last 50 years. He is a middle-income man who was a merchant marine. Mr. W, who is unmarried, is raising his teenager daughter and caring for his severely impaired brother who is deaf and blind. Meanwhile, he is taking a computer course. The interviewer, learning about this, asked if education had always been important to him, to which he responded:
It's important to me because it was important to my grandmother. I think she went through something like the third grade. Right after slavery. She didn't get no education, but only mostly what she learned herself. She could read, write, and calculate pretty well. And that's because she had plenty of books to read. She thought that it was important. But that was a funny thing. I didn't finish high school, but my father did. I said, "We're slipping backwards." I can't have too much of that, you know.
Mr. W commented on how he hears prejudice on talk shows he listens to and how things haven't changed much:
I've been in wars for my country. And we have as much right to speak up about it as anybody else. Never mind the old stuff they used to come up with. I had that many years ago, you know, "You're Black. Why don't you go back to Africa?" I say, "You SOB, I didn't come from Africa. Where in the hell do you come from? Why don't you go back to Europe, or some damn place?" So when I see them people in the talk shows and they start on their ideas on what they think ... they be talking and looking too simple and innocent.
A year later, Mr. W complained further about the media and related it to his experience of inequality: "I see it on that show and a couple of others about people in my ethnic group. All are a minority and on welfare. Asians and even Latinos. We're at the bottom." A few minutes later, he commented, "When the war come, a lot of them [friends] went into the Army. Last time I seen them they was lieutenants and captains. One of them made a major." The interviewer interjected, "They were all Black?" He responded, "Yeah. That's the situation of our times. They weren't made anything then, either," referring to the relatively low ranks of most African Americans in the armed services.
Despite being perpetually busy with supervising his daughter, overseeing his brother's care, and his ongoing interest in self-education, Mr. W has a number of health conditions:
When you get to a certain age, you're a senior citizen. You're going to have health problems, but you overlook them. You just go on anyway because that's what you have to do. I have a heart condition that hasn't bothered me in a long time. I'm a diabetic. I have arthritis, and they're gonna eventually operate on my right knee. Both of them bother me. I've had arthritis for quite a while. Also, I have glaucoma, too.
Asked if he saw himself as independent, Mr. W responded:
I've been that way all my life, so I'm happily independent. I've no one really to depend on. I've always been independent. My father died when I was quite young. Six or 7 years old, and I was the oldest one in the family so I've been some kind of a caregiver. Over the years I do the same things I have to do. I can't move or maneuver around [because of knees]. What's taken my independence away from me was my daughter. I've had her since she was a year old. So then I couldn't run around all over the place. That was out. That slowed me down considerably. She's a teenager now.
Unlike most others in this research, Mr. W is not actively religious. He does not belong to a particular religious denomination: "I don't really embrace any religion. My grandfather on my mother's side was a Baptist preacher, and on my father's side, my grandfather was a Methodist preacher. I've gone to church, but I've never embraced any of them."
A year after he was first interviewed, Mr. W described his love of learning:
It gives you control over your lifestyle. And that means studying. I don't really think a person can ever stop studying. I don't give a damn if you're 101, you can always learn. I believe in that. And if you have someone around that you can teach and talk with, you may help them, but you also help yourself. Everyday, if you don't learn something everyday, then you failed that day.
Two years after he was first interviewed, Mr. W had a stroke and had some left-sided weakness. When he was interviewed 2 months after the stroke, the interviewer commented on how he was already up and about. He said, "They tell me not to go anywhere without a companion, which don't mean too much to me. If I decide I want to go somewhere and a companion ain't around, I'm on my way." Asked if his philosophy about his health has changed, he responded, "I'm responsible for whatever happens to me. And since the stroke, I'm doing the same thing I done before, and it's workin' out pretty good. But if I give in and go to sleep, then I will never really get over it."
Mr. W did begin to turn back to religion after his stroke: "I think probably I'll go [to church] on Sunday. They're several of them I have in mind. I might even turn out to be a Buddhist. I've met some and know some, and they're pretty good people." Asked why he wanted to start with religion now, he responded,
I don't have no idea why. Everybody else is working with it so I feel that I've been missing something. Not that I'm afraid or think I'm gonna die or anything like that because I know I'm gonna die one of these days. But I guess it's something to belong to something. It don't seem to hurt the other people that I know. I don't see where it can hurt me. I used to pray. I do very little praying now. I was watching "The Bible" on A & E. That might have been one of the reasons that brought me around.
But when a church recruiter came to visit Mr. W, he was resistant: "They sent me a recruiter down. The trouble I had with him, though, they wanted to push me into it, and I said, ‘I ain't ready yet.’ This is where your independence comes in. I don't want anybody to have full control of me, and I don't want full control of anyone else because I think a person has a mind and should think."
Mr. W, a lifelong proponent and practitioner of ongoing education, clearly sees education as the key to equality. Largely self-educated, Mr. W is attuned to the inequalities he observes in society, providing a running commentary on what he observes. Independent and forward looking, Mr. W is also a caregiver to others. He takes raising a child and overseeing the care of a severely disabled sibling in stride in old age. Although raised in the church, Mr. W does not consider becoming actively religious until after he has a stroke. But even then Mr. W experiences a conflict between being an independent free-thinker ("I might even turn out to be a Buddhist") and being forced to think within the confines of a specific religion. Above all, his sense of equality is embodied in his view of himself as an independent doer and thinker.
Commonalities
Despite differences in gender, socioeconomic status, educational background, and religion, these respondents have a number of commonalities. Although they all have serious life-threatening illnesses, dealing with their illness is only one part of life and constitutes another form of adversity to be overcome. They all attest to their equality and their right to be autonomous in the face of discrimination and inequality. Most of them are supported by their deep, abiding faith in a God that represents equality. All four comment critically on current times, illustrating their ongoing engagement with issues in society, especially issues of equality. It becomes clear in these narratives that independence gives meaning to life. All four have an unshakeable faith in themselves and in their ability to persevere. Looking ahead while they examine the past is a dominant aspect of the resilient attitude each one has. Each of them has goals and plans and is actively engaged in moving on with life through specific activities, whether it is reading, voting, quilt making, caregiving, learning new skills, or exploring new possibilities. This resilient philosophy has enabled them to make the most of their lives.
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DISCUSSION |
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TOPAbstractAfrican American Cultural...MethodsResultsDiscussionReferences |
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The resilient philosophy that African Americans in this study demonstrate has its roots in their long struggle for freedom and equality. Personal freedom has been severely curtailed for African Americans throughout U.S. history, and continues to be challenged today, which is why continuing to affirm one's equality and personal autonomy is critical. Cultural history combined with lifelong discrimination, cultural values of independence, autonomy, and religiosity are apparently major factors in shaping a deeply ingrained resilience that sustains people through increasing infirmity in later life. Respondents' statements exemplified values of survival and overcoming oppression. Without exception, these elders were unrelenting in their efforts to persevere.
This research can be seen as further evidence that a resilient philosophy may be facilitated by overcoming hardship. For example, studies of Jewish and deaf communities in old age have respectively addressed the emotional strength people demonstrate in later life that has emerged in part out of hardship, demonstrating how different life experiences contribute to the development of inner resilience (Becker, 1980; Myerhoff, 1978). Although these groups experienced discrimination, the lifelong experience of racism is apparently qualitatively different because African Americans have endured unrelenting racism. Although racism in U.S. society may be more subtle than it once was, it continues to pervade this society in many ways (Williams, 1999). Older African Americans' experiences of racism are central to their responses to life-threatening illnesses. The cultural values that shape how they manage their illnesses were created in large part by living in a racist society, in which survival and endurance are paramount. African American elders not only continue to experience discrimination in later life, they have lived through many decades in which racism was overt. Those experiences are embedded in their individual histories and their daily lives. Indeed, these elders articulate an intentional attitude of overcoming adversity posed by racism. Conscious resistance to racism is apparently a major factor in shaping resilience in African Americans.
The role of racism, although it has been widely documented in research generally (Smedley, Smith, & Nelson, 2001), has received limited attention in the gerontology literature. Williams and Wilson (2001) call for more and better data to identify how the social, economic, political, and cultural context of elderly ethnic minorities combines with racism and migration to influence people's lives in ways that can enhance or impair their physical and mental health. The impact and unrelenting strain racism causes in people's lives needs to be given much greater consideration in studying older ethnic minorities. Living with the burden of racism, in which the body itself is racialized and permeated by oppression, has a pervasive effect on people's lives. A life course approach to the study of aging necessitates such an emphasis.
This article has demonstrated the importance of examining racism in an analysis of how African Americans live with chronic illness. But even when research findings do not directly demonstrate a link, gerontologists should be aware that racial oppression may be an important part of the background to research findings and not omit its possible effects from their analyses. Failure to do so runs the risk of presenting an incomplete picture of what research findings actually say and does a disservice to the growing literature on older ethnic minorities by reducing the relevance of the research.
Some new directions for future research are suggested by this research. Further exploration of what constitutes resilience in different cultural groups and how philosophies of resilience operate in old age could lead to new ways of conceptualizing the aging process. Replacing the current emphasis on pathologies and deficits in research on minority aging with research that examines how people make the most of their lives would enable us to better understand how people persevere in old age despite the obstacles they face. It also appears that it is time to retire certain concepts in the gerontologic literature such as double jeopardy. This research shows how a potential deficit has been turned into a strength by African American elders, thus rendering the double jeopardy concept obsolete.
In conclusion, this research suggests that much greater attention should be given to understanding the culturally specific resources that ethnic minority elders engage as they live with infirmity. Such an emphasis has much promise for advancing our knowledge of how resilience is forged in the face of encroaching illness in later life. In this study, racism was instrumental in shaping African Americans' responses to their illnesses through cultural values that emphasized survival, as expressed through religiosity, independence, and a resilient philosophy. This research thus suggests that a racism-conscious perspective is needed when addressing aging in ethnic minorities and that such a perspective may lead to a more accurate contextualization of research findings on diverse topics.
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Acknowledgments |
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Footnotes |
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Received for publication August 12, 2004. Accepted for publication November 2, 2004.
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