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RESEARCH ARTICLE |
Center for the Study of Aging and Human Development, Duke University Medical Center, Durham, North Carolina.
Address correspondence to Samantha Solimeo, MPH, PhD, Department of Sociology & Anthropology, North Carolina State University, Campus Box 8107, Raleigh, NC 27695. E-mail: Samantha{at}Solimeo.com
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Abstract |
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Methods. The study utilized several methods: participant observation at PD support group meetings, illness narrative interviews with PD sufferers, and a questionnaire.
Results. A total of 171 PD sufferers (106 men, 65 women) enrolled in the study. Illness narratives revealed gender differences in the impact of specific symptoms on daily life: Women's narratives emphasized the impact of the on/off effect and "thinking problems," whereas men's narratives emphasized the consequences of their physical appearance. In comparison, quantitative data found little sex difference in symptomatology.
Discussion. The comparison of qualitatively and quantitatively derived data reveals the importance of attending to both sex and gender. Qualitative data demonstrate how the meaning of PD symptoms is gendered and illustrate an example of how gender and sex research differ. All narratives reflect the importance of role continuity, but men's put at the forefront appearance and social isolation whereas women's underscore their relational aspects of domestic activities. These data imply that providers must look beyond symptomatology to the gendered saliency of particular somatic phenomena.
Key Words: Gender • Parkinson's disease • Masculinity • Femininity • Chronic illness • Disability
AGING is a biopsychosocial process made meaningful by its position within a larger cultural and historical context. Researchers have given much attention to the gendered nature of aging in contemporary society, and feminist gerontological scholars have demonstrated how socioeconomic disparities and health care barriers pose special disadvantages to aging women (Gannon, 1999
; O'Rand & Henretta, 1999; Pearsall, 1997; Ray, 1996). Although aging is certainly a female domain, whereby a larger proportion of caregivers and those who survive into older age are women, the experiences of men as they age are increasingly regarded as products of a gendered life course (Calasanti, 2004; Fleming, 1999; Lorber & Moore, 2002; Thompson, 1994). Given the preponderance of attention paid to the health burdens accompanying aging and recent calls for gender-based medicine (Porche, 2007; Wizemann & Pardue, 2001), it seems clear that an impetus abounds for integrating sex, gender, and age in health research. The challenge for gerontological research lies in determining the goals of a gendered analysis of later life: Are scholars looking to describe sex differences or to understand gendered lives?
Differences in men's and women's experiences are products of both biological and social factors; they are manifestations of both the biologically based variable sex and the socioculturally based construct of gender. Although such concepts are intrinsically related, as evidenced by rich scholarship on transgender communities (see Ekins & King, 1999), research on sex and gender can be delineated in part by considering whether male/female differences are treated as binary, biologically determined variables or flexible sites of meaning making. Yet, researchers' understanding of how aging and older age are experienced as gendered phenomena has privileged age-biased constructions of gender or gender-blind constructions of age. Gender and age function as social axes along which inequalities are distributed, and experts must examine their intersections along the continuum of the life course (Calasanti & Slevin, 2006b; Meadows & Davidson, 2006).
A social constructionist framework informs this perspective. Predicated upon the notion that one's experience of the world is produced and reproduced by individual social actors operating in historically and culturally unique social spaces (Gubrium & Holstein, 1999), social constructionist theory emphasizes the importance of meaning to understanding gendered aging. Calasanti and Slevin's (2006a) edited volume on the importance of age to gender theory provided a window to the ethnocentric or age-centric focus on productivity and sexuality as the primary measures of gender achievement. Their introductory chapter showed how age relations have been constructed with a particular mode of successful aging, and they positioned age relations as a primary axis of social organization, underscoring the importance of viewing aging as a special facet of identity rather than a byproduct of biological inevitability and good fortune (Calasanti & Slevin, 2006b). Providing a complementary piece of this framework, Meadows and Davidson's (2006) study of older men's gender work showed that older men strive to achieve masculinity with similar meanings to those of younger men but must do so from a disadvantaged position. Chronological age and somatic change work in concert to circumscribe older men's access to paid, productive work, and thus masculinity in later life may be performed via activities such as outdoor household chores and participation in civic organizations.
Calasanti and Slevin (2006b) and Meadows and Davidson (2006) demonstrated how, rather than having a "roleless role," older adults uniquely perform both age and gender according to their social location and chronological age. The biological underpinnings of these social categories make their importance to the study of chronic conditions increasingly important. Conditions envelop sufferers within a lifelong context of recognizing the connections between the somatic, the social, and the personal, and the medicalization of later life compounds the impact of disease status on gender and age identity (Solimeo, in press). By comparing quantitative, categorical data to phenomenological, qualitative data, researchers can deepen their understanding of how embodiment emerges as both a somatic and social process. Such a project is embedded in studies of aging, a social construct that, like gender, is enacted through performance and specific cultural constructions of the body.
Parkinson's disease (PD), a common chronic disorder affecting both men and women, is the context here for demonstrating that attending to sex without gender provides a partial and potentially misleading understanding of the experience and meaning of somatic phenomena. PD occurs most frequently among those aged 60 and older; possesses a somewhat sex-blind prevalence; and stimulates considerable stress among its sufferers, who must contend with a lifetime of medication use and symptom-related assaults to their identity maintenance. This article, drawing on data collected from male and female PD sufferers (Solimeo, in press), explores how a mixed-methods approach to male/female differences can demonstrate the value of adding gender to studies of sex differences. Data derived from 15 months of ethnographic study among older adults living with PD.
General Challenges for PD Sufferers
PD is a neurological disorder characterized by the presence of a resting tremor, bradykinesia (slowed movement), and rigidity (overall stiffness). PD's ultimate etiology is unknown, and it is incurable; however, PD patients can gain symptomatic relief through pharmacotherapy. Over time, patients' symptoms may require both higher dosages and polypharmacy, but patients obtain less satisfactory relief with an ever-increasing range of side effects. A combination of disease progression and side effects contributes to sufferers' considerable physical and cognitive limitations, including freezing (momentary inability to move), impaired executive function, gait problems, chronic constipation, drooling, dyskinesia (uncontrollable spasm-like movements), the on/off syndrome (sudden loss of function between medication doses), and hallucinations (Lees, 2002). The damage to dopaminergic pathways that causes motor impairments is also associated with depression, anxiety, and cognitive decline. Neuropsychiatric symptoms are related to situational components, such as sufferers' perceived lack of control, their increased social isolation, and their grief concerning increasing disability (Aarsland, Andersen, Larsen, Lolk, & Kragh-Sorensen, 2003; Aarsland et al., 1999). The profound somatic changes associated with PD lead many patients to be embarrassed by their changing appearance and abilities and contribute to their withdrawal from social spheres (Fitzsimmons & Bunting, 1993; Nijhof, 1995).
PD: Sex and Gender Differences
PD's impact on sufferers' daily lives and social selves is uncontested (Fitzsimmons & Bunting, 1993; Koplas et al., 1999). Few published studies have focused on its gendered impact, but there are studies that have explored sex differences in disease presentation. Clinical research has found women to be more likely than men to report depressive symptoms (Rojo et al., 2003), low back pain, leg cramps, constipation, and excess saliva; men are more likely to report problems with speech (Scott, Borgman, Engler, Johnels, & Aquilonius, 2000). Studies of PD sufferers' sexual health have been androcentric and have focused on erectile dysfunction (Lambert & Waters, 1998; Pohanka, Kanovsky, Bares, Pulkrabek, & Rektor, 2005; Zesiewicz, Helal, & Hauser, 2000). What such studies tell experts about the experience of living with PD or its treatment is unclear. Aside from the gender bias in studies of sexual function, it is difficult to extrapolate how differences in symptom reporting reflect differences in patients' experiences.
Gender—the cultural behaviors associated with sex—has the potential to demonstrate the meaning of such differences for men and women (Lorber & Moore, 2002). Indeed, anthropological and feminist research have demonstrated that the transformation of impairments into disabilities and the meanings of those disabilities are cultural processes that occur in gendered spaces (Ingstad & Whyte, 1995; Kleinman, 1988; Lorber & Moore, 2002). The cultural construction of masculine and feminine identity is tied to the perceived strengths and weaknesses of male and female bodies (Martin, 1987). As a performative aspect of identity enacted in particular social spaces, gender in later life deserves special scrutiny. The gendering of family and workplace responsibilities affects the meaning of disability (Lorber & Moore, 2002). For women whose reproductive capacities have often been construed as biological correlates of their ability to become mothers and wives, femininity is a procreative, caregiving role; women often articulate their identify in such terms (Gilligan, 1982). For men, masculinity is frequently defined in terms of physical strength and independence (Connell, 2005; Drummond, 2003), and men may feel emasculated by disability (Lorber & Moore, 2002).
There is much to be understood about how gender may affect PD outcomes. The extant literature on gender and PD is thin. Recent studies have investigated sex differences in treatment use and symptomatology. Men and women with similar symptoms receive different medications (Fernandez, Lapane, Ott, & Friedman, 2000) and are referred for surgical interventions at differing rates (Hariz, Lindberg, Hariz, & Bergenheim, 2003). It is unclear from these studies whether patient accounts of PD symptoms influence sex differences in treatment decisions, but the available data imply that patient sex is a variable in determining treatment decisions. Two studies of gender differences in the experience of PD have concluded that masculine identity among PD patients is associated with more effective coping skills (Schreurs, De Ridder, & Bensing, 2000) and with a higher quality of life (Moore, Kreitler, Ehrenfeld, & Giladi, 2005). The current study combined an attention to sex differences in symptomatology with a study of how male and female gender identity may influence the interpretation of somatic phenomena in PD.
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METHODS |
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Participant observation entailed attending PD support groups; making informal social visits; conducting interviews; and recording notes on such events as well as participants' appearance, demeanor, symptoms, and conversations. More focused techniques of questionnaires and illness narrative interviews (see Bernard, 1995) supplemented observational data. Drawing on the models developed by Kleinman (1978; 1988) and elaborated by Mattingly and Garro (2000), I collected PD sufferer illness narratives to elicit first-hand experiences with PD from disease onset to the present time. Sufferers use narrative to create significance, meaning, and an understanding of themselves in the altering context of sickness (Gubrium & Holstein, 1999; Riessman, 1993, 2003). Illness narratives provided depth to observational data and served to demonstrate how people live with chronic illness (Conrad, 1990).
I describe questionnaire instruments in detail elsewhere (Solimeo, in press). The PD sufferer questionnaire included a measure of health status—the Medical Outcomes Study (RAND, 2006; Ware & Sherbourne, 1992); demographic variables; comorbidities; health care utilization; and PD-specific items such as medication use, age at onset, and time since diagnosis. The questionnaire included a list of symptoms identified by PD sufferers as being PD-related. This list was compiled during a pilot study for the larger ethnographic project. Respondents reported on the presence of these symptoms in their bodies.
Eligible persons were community dwelling, English speaking, aged 60 or older, with self-reported PD. Study participants resided in Iowa or Illinois, within a 120-mile radius of the tertiary care center for the State of Iowa. I asked all participants to consent to observation and invited them to complete a mailed questionnaire. I asked a subset of PD sufferers to be interviewed. The University of Iowa institutional review board reviewed and approved the study.
Data Collection and Analysis
A majority of data derived from field notes, interview transcripts, and open-ended questionnaire items. Narrative analysis, facilitated by the NVIVO (Version 2.0) software package, was the primary analytic technique. I first indexed narratives topically, with pertinent passages highlighted and content coded. I then further delineated topic codes using subcodes for greater indexing specificity. Next, I coded the illness narratives for recurrent themes and events. Finally, I categorized the illness narratives by mode of embodiment (See Solimeo, in press).
Questionnaires were administered by mail, and data were analyzed with SPSS. I coded, scored, and analyzed responses using descriptive statistics and Student's t test or analysis of variance where appropriate. I present an in-depth discussion of the questionnaire analysis elsewhere (Solimeo, in press). I used Pearson chi-squares to compare categorical data for sex and presence or absence of PD symptoms, and I assessed significance at the p =.05 level.
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RESULTS |
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I was always a fast paced person. To see that I am slow is confusing and irritating to me. I will be reaching for something [slowly] and think, "Well, reach for it!" Slow motion. I think, "What are you doing? Why don't you just reach over there and pick it up and stop dinking around?" It won't go! The head knows it's not going. It just doesn't move any faster.
Another woman described, "I used to be able to start six tasks and get them all done at once. Now I find that I will start six and none of them will get finished, maybe." This woman's inability to complete activities made it difficult to maintain housekeeping standards.
Women's complaints concerning the on/off syndrome and thinking problems were integral to their lifelong role in maintaining social relationships. Relationships with others were often solidified through social events and shared meals. More than one woman was grieved by her inability to prepare family meals, something they had done throughout their married lives. For example, one female PD sufferer in her late 60s described how her husband had begun to take over household tasks that she identified as hers. She shared:
Yeah, [my husband is] good. I couldn't get along without him. There are times that I wish I could. He's taken over the heavy cleaning .... He did learn to cook when I had my broken arm. He even did a Thanksgiving dinner all by himself. We had company and he did the pies, the whole bit .... He has developed into a pretty fair cook. I love to cook. If somebody could do the planning for me ...
She belied her admiration and gratitude by joking that she hid certain recipes from her husband so that he could not prepare her dishes. This move ensured that her role loss would not be complete.
Another woman expressed appreciation of her husband's diligence in performing her tasks, but her inability to do even basic chores contributed to her depression. She explained:
I can't walk and I can't do the things I used to do .... I just set most of the time. It gets pretty disgusting .... I don't do much of anything. Set in this chair. [Laughs] I fall quite a bit. I get up and move around and try to help cook and I am forever falling in the kitchen.
And the following exchange between a women with somewhat advanced PD and her caregiver husband who was in relatively good health spoke to the importance of cooking to her identity:
Husband: "She's been getting up in the morning and making breakfast."Wife: "Making instant breakfast, boy that's a hard thing to do. [Laughs] Sometimes I get mixed up. Like making oatmeal, it's like I forgot how to do it. But, I forget which one I put stuff in. Like tea, I don't remember whether I put the regular tea in it or the decaf tea."
Her comments veiled the humiliation she felt at being so ineffectual in performing at the lowest of her standards for domesticity.
PD's Challenges to the Maintenance of Masculine Identity
Men and women both related embarrassing episodes and dissatisfaction with their changing appearance. Women's commentary on symptoms emphasized activities that connected them to others, whereas men's comments focused on their assessment of others' perception of them. One third of all men cited loss of strength and ambition as their primary symptoms; no women did. Men described their unhappiness with what they perceived to be emasculated and unreliable bodies, particularly with poor posture and loss of strength—symptoms that affected their ability to perform household duties and that led them to avoid public spaces.
The following passage from a male interviewee spoke to the importance of productivity to masculinity:
Well, I don't have ambition and I don't have the strength and I don't have the balance. Those are the three main things .... I just don't have the ambition I used to have, [I would] see something I need to do and I would go to do it right now. Now, I wait, "Well, I'll do that later." Just put it off ...
Although that particular man had severe postural instability and gait problems, his narrative focused on his enervation.
Men defined masculinity partly by a responsibility to carry heavy things, drive the car, and tend to the lawn and household chores, and men were reluctant to relinquish these tasks until their bodies forced them to acquiesce. Part of this reluctance stemmed from a concern with appearance, as the following comment illustrated:
I [told my neurologist], "I don't like to use that cane." And she said, "All right. No problem. But the day is coming that you are going to use it." Right now I don't like the idea. Tomorrow I might change my mind .... I am not worried about how I look. I just don't like [how I look]. Well, I am bent over. I walk downtown and in those big store windows I see that guy in there and I don't know him. "Who the hell is that?" Bent over. That really hurts.
This man's remarks show how refusal to accept change, in this case an adaptive device, may be linked to concerns about appearance.
Other men echoed this shame about appearance when they described trying to hide their symptoms. About half of the men's narratives related at least one example of an embarrassing incident—drooling, falling, getting stuck in the restroom, knocking over merchandise at the store, or being accused of masturbating (although in fact such men were trying to disguise a shaking hand)—that deterred them from attending public events. One can see the power of embarrassment in the narrative of a man who focused on social anxiety rather than functional limitations. I asked him if he was embarrassed at having to use a cane. He conceded:
That's probably true. That's what a lot for this comes from, is my embarrassment of having this disease. Which I know I can't do anything about .... I am not ashamed of telling people that I have got it .... If they want to disassociate themselves with me, that's fine, too .... I feel very conspicuous though, when we go out to eat or something .... I like to get off in the corner somewhere or sit off to the side where I am not in the center where they can see all four sides of you. I'd rather sit back away from the crowd a little bit, if I can ....
He seemed preoccupied with how others perceived him. A year earlier he had been approached by a stranger asking him questions about his PD. He pretended ignorance:
Oh, I knew I had it. But I was trying to fake it .... Well, I guess when I see [people that I know], even at a distance. I think, "Well am I going to run into them?" If I know them well it doesn't bother me as much as when I don't know them too well ...
Again, instead of considering the embodied, somatic consequences of PD, his narrative characterized PD as an experience of an emasculating marker of disability and lack of control.
Presentation of a competent self was important to one male sufferer whose comments illustrated the relationship between presentation of self and withdrawal from social space:
[I venture out] very seldom. There are sometimes a week goes by and I don't get out of the house. If it's real cold weather I don't get out of the house .... I don't like to go out and eat. I spill a lot of stuff.
I asked him what he considered the worst part of his PD, and his response was surprising. Rather than describing his profound depression, tremor, or balance problems, he talked about his appearance:
After this morning, I'd say getting dressed is the biggest headache. It takes me a long time to get dressed. Especially when I have to put on something that looks halfway decent. Otherwise I can slip into a pair of shorts or something and it doesn't take long. If I have to get dressed, it takes a bit longer. That I would have to say is the most difficult thing.
Gender and Tremor
Any qualitative work on PD would be remiss if it did not address the symptom often considered synonymous with the disorder: resting tremor. As Table 2 shows, about half of PD sufferers experienced tremor, but although men and women were equally likely to discuss tremor as a burden, they did so in different contexts.
Women framed tremor as a problem when it interfered with activities that involved other people. Church activities were the most commonly noted context for tremor in women's narratives. Women were embarrassed to hold other people's hands or to share hymnals because they felt that their shaking would bother the other person. One women described:
And [tremor is] very hard for me .... It bothers me, because I do like to go out .... In church, at the Our Father, we always hold hands .... I would rather not because when I do hold hands it gives me arm spasms, because I try to hold it still. And it drives me crazy. But I don't want to not be friendly, you know, when they put their hand out .... That is one thing that bothers me. I'd rather think of the Our Father, but what I'm doing is thinking, "How am I shaking?" And it makes me upset. It upsets me.
Her comments illustrated both her concern with appearance and her attention to performing relational work.
Men also described tremor in terms of appearance, but their narratives focused on how tremor affected their sense of competence. One man explained:
It embarrasses me a little bit when I start shaking. If I can grab a hold of something and squeeze it, the tremor is there, but you are not showing it. I hate to be classified as a cripple .... When we go to the store or something I feel like I am conspicuous or something if I have this tremor. So when we go to the store we each get a grocery cart. If I can hang onto something like that nobody knows that I am not normal.
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; Russell, 2007), and Krekula (2007) recently ventured that age and gender are intersectional performances enacted in relationship with each other. However, in the case of PD, most studies claiming to examine gender do so without an attention to identity or meaning. The current study examined the differences in quantitatively and qualitatively derived data in the study of gender and sex in PD. The quantitative data imply that men and women face similar somatic insults, whereas the qualitative data reveal how the experience of impairments is gendered. The activities that people engage in are an integral part of gendered "identity work" (Russell, 2007). Men and women attribute value to activities based upon gendered role continuity, and thus their interpretation of particular symptoms' impact is gendered.
PD can cause a stiff, grim facial expression and a low, hoarse masculine voice in contrast to usual feminine demeanor, but women's narratives did not focus on this aspect of femininity. PD-related executive function impairment affects both men and women, yet men's narratives did not stress thinking problems as being particularly salient. The gendered experience of PD symptoms looks different than one might expect because symptoms are evaluated with an age-blind gender metric. As Meadows and Davidson (2006) showed, gender work in later life seeks to accomplish lifelong gender ideals but does so from a different social and embodied standpoint.
Women's emphasis on symptoms that affect their ability to organize and fortify social relationships is consistent with Russell's (2007) finding that women's identity is served by their role as social organizers and with Gilligan's (1982) work on the construction of gender through narrative. In contrast, men's narratives were characterized by attention to appearance and strength, consistent with research that found that loss of physical performance is an important challenge for men in later life and that the impairments that accompany chronic illness can cause men to reevaluate their place in the gender order (Connell, 2005; Drummond, 2003; Gibbs, 2005). Although it is not a revolutionary finding that physical impairments assault masculinity among male sufferers, the gendered experience of PD affects different social spheres. Men's experience with PD impacts their public persona and contributes to a reluctance to maintain social relationships and attend functions outside of the domestic sphere. Women's experiences largely pertain to more intimate relationships and are private ones often contained within domestic and family spaces. However, both genders' narratives ultimately speak to the importance of role continuity in later life (Atchley, 1989).
Sex and gender continue to be critical aspects of health and sickness in later life. Although researchers' understanding of the role of sex in health care outcomes is emerging (Wizemann & Pardue, 2001), the influence of gender is underexamined. For PD patients, gender is a salient site where the meaning of somatic experience is produced. These data imply that male patients are more likely to withdraw from social arenas and women more likely to become distressed when unable to fulfill their domestic responsibilities. Health care providers may recognize the importance of eliciting patients' perspectives on their condition, but they must also emphasize how symptoms relate to patients' social roles.
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Received for publication October 23, 2006. Accepted for publication July 20, 2007.
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