Disability Studies Quarterly
Fall 2006, Volume 26, No. 4
<www.dsq-sds.org>
Copyright 2006 by the Society
for Disability Studies


Reclaiming Agency, Ensuring Survival:
Disabled Urban Ghanaian Women's Negotiations of
Church and Family Belonging

Denise M. Nepveux
Assistant Professor of Critical Disability Studies [1]
York University, Toronto, Canada
E-mail: dnepveux@yorku.ca



Abstract

This paper draws from a narrative ethnography of women members of disabled people's organizations (DPOs) in Accra, Ghana. Through recounting their autobiographical stories, elicited in multiple interviews, it explores how they navigate tensions among disability status, material survival, family belonging and religious participation Finding themselves neither fully acknowledged in family roles nor as religious community members, disabled women struggle to carve out spaces of self-determination and well-being between families and religious institutions, and between their developing aspirations and the circumscribed options available to them at the intersections of poverty, gender and disability. Women draw from multiple experiences, communities and discourses to interpret disability in complex and varied ways, not solely within the "moral models" often attributed to African cultures. Utilizing three biographical narratives from a 2003-2004 qualitative study, this paper shows how urban Ghanaian women with disabilities work to redefine themselves as social participants, and indeed as fully human, through engagement with religion. Implications for disability activism are discussed in the paper's conclusion.

Keywords: Women with Disabilities, Ghana, West Africa, Christianity, African Traditional Religion, Disability Studies, Community, Agency, Belonging, Identity, Narrative

Introduction

This paper is a narrative exploration of the struggles of three urban West African women with disabilities to resist social and economic marginalization, manage social change and find places of belonging via Christian religious participation. It draws upon 15 months of fieldwork in 2003-2004 with women with physical and sensory impairments who were members of disabled people's organizations (DPOs) in Accra, Ghana.

The narrative accounts presented here are drawn from an ethnographic study of the perspectives and agency of women members of disability self-help and/or advocacy groups in the Greater Accra Region of Ghana, West Africa. Women's family roles and relationships are woven throughout the study. The larger study was an in-depth exploration of the lives and perspectives of urban, disabled West African women. Fifteen months of fieldwork led me to focus upon understanding how women perceived their roles in families, disability groups and other communities, and how women's approaches to participation in these groups related to identity and self-determination. This essay emphasizes women's participation in religion, whereas the larger (unpublished) work also explores their experiences of urban mobility, work, and participation in disability groups. Religious participation emerged as an important arena through which women contested or reframed their marginalization as disabled women, reasserted their common humanity and endeavored to address material conditions of their lives. This paper presents the reconstructed narratives of only three women in order to convey in more depth the complexity of relationships among family, self, disability and religion, and the subtlety and creativity with which women negotiated these relationships.

Context

The study took place in the Greater Accra Region of Ghana. Greater Accra is an urban area of 1000 square miles on the southern coast of Ghana, encompassing the national capital and its suburbs. The population of Greater Accra roughly doubled between the 1984 and 2000 census, growing from 1.43 million to 2.9 million. Some background on women with disabilities and religious practices in Ghana will help set the stage to understand the narratives presented here.

Disabled Women in Ghana

Women with disabilities have recently been recognized in Ghana as a group that is vulnerable to neglect, abuse and sexual exploitation (Coalition on the Women's Manifesto, 2004). They are less likely to marry than other women, highly vulnerable to divorce and frequently left to raise children on their own (Ministry of Employment and Social Welfare, 2000). Significant economic and procedural barriers prevent lower-income women with disabilities from accessing basic mobility aids or health services. They confront significant barriers to fulfilling the multiple roles occupied by non-disabled peers. If they are disabled at a young age, they may not be trained at home in the skills needed to run a household or to manage a small business. They face barriers to education, receiving even fewer years of schooling than their male counterparts (Ministry of Employment and Social Welfare, 2000). Concerns for disability access tend to be under-addressed in women and development projects which assist women with capital or training (Singleton et al, 2001). Ghanaian disability organizations have very little funding to assist their members with health or vocational concerns, and expect "women's wings" to address most issues of specific concern to their women members. The Ghanaian government has residential vocational rehabilitation centers for persons with disabilities in each region of Ghana, but only one location admits women. Under the 1992 Constitution of Ghana, people with disabilities have human rights protections and the right to an equal share in family property. There were few legal elaborations of these protections until years of activism by disability groups resulted in passage of a major national disability rights bill, the Persons with Disability Act, in August, 2006.

Religion in Ghana

Freedom of religion is protected under Ghana's 1992 Constitution. According to 2000 Census figures, Islam is practiced by 15.6%, 8.5% claim Traditional religion and 69% identify themselves as Christian. Traditional Religion(s) refers to indigenous worship rituals, moral systems and beliefs (Kudadjie, 1976). Traditional beliefs and practices remain a strong element in everyday discourse and popular media (Meyer, 2004; ibid,1992). There is significant influence from traditional religion in West African practices of Islam and Christianity (Meyer, 1992; Haynes, 1996), as well as participation in divination and other traditional practices among people who profess Christianity or Islam. Significant movement and concurrent practice amongst religious groups and affiliations occurs as people seek to get particular needs met (Haynes, 1996, citing Hackett, 1987).

Christian churches in Ghana are loosely categorized as mainline, Pentecostal/charismatic and spiritualist. Spiritualist churches merge Christianity and traditional religion and tend to emphasize healing. Mainline churches include Roman Catholic and orthodox Protestant churches with long missionary presence in Ghana, such as Presbyterian and Methodist. These churches and their service organizations provide a large proportion of extant health, rehabilitation and social welfare services in Ghana. Foreign government aid organizations such as USAID often fund health and development projects directly through religious organizations such as Catholic Relief. Although affiliation with a mainline church remains a "mark of civilization and respectability" (Haynes, 1996, p. 181), Pentecostal or charismatic churches have grown exponentially in Ghana in the past 25 years. This is part of a larger trend across Africa and South America, particularly among the working classes (Haynes, 1996; Gifford, 2004). The growing influence of this movement is seen through the "Pentacostalite style" (Meyer, 2004), a charismatic Christian flavor that permeates popular media and public life in Accra.

Methodology

This research combines approaches from feminist anthropology and narrative inquiry in order to explore the experiences and perspectives of women with disabilities, primarily through their 'storied' accounts. It draws upon intensive field methods (interviews, focus groups, participant observation) "to understand a local way of seeing and doing things" (Lambek, 2002, pp. 2-3) within social and historical context. Susan Reynolds Whyte has called for an anthropology of disability which shows "how persons are construed in relation to biology, religion, ethics, and the institutional structure of society," and "tries to comprehend the experience of being an impaired person through first-hand accounts," (Whyte, 1995, p. 267). Contemporary workers in anthropology utilize a variety of writing strategies in order to creatively (albeit always partially) address issues of representation and voice (Clifford & Marcus, 1986). Feminist and critical strands in ethnography have taken these developments a step further by taking seriously the agency and resistance of subjugated groups and emphasizing the need to critique power relations in the "field" as well as in the research endeavor (Visweswaran, 1994).

While I used a variety of field methods to inform this research, the analysis in this paper draws primarily from narrative inquiry (Clandenin & Connelly, 1990; 2000). This is a research methodology within education, medicine and psychology which understands experience — including the experience of conducting research - as "storied," i.e., lived, interpreted and communicated through story. It approaches stories of self as experiential more than factual, i.e., constituting an individual's attempts to make sense of "who am I?," "where am I?" and "how did I get here?" — both for herself and in the context of the research interview. Narrative research "allow[s] for nonunitary conceptions of the self" (Bloom, 2002, p. 310) and uses "narratives of the 'self' as a location from which the researcher can generate social critique and advocacy," (ibid, p. 310). The individual's stories may be closely read for how she adapts, appropriates, and resists the roles and narratives available in the social environment (Mishler, 1999).

About the Researcher

The questions, perspectives and presence I brought to the research were influenced by my status as a white, North American, nondisabled researcher and my background in feminism and disability studies. As this was my first experience working in Ghana, I strove to deepen my understanding of the local context and culture by living with a Ghanaian family, studying local languages of Ga and Ghanaian Sign Language, and observing and building relationships with local disability organizations for six months prior to formal data collection. I consulted with disability group leaders on research plans and worked closely throughout fieldwork with a research assistant who was a local disability group member.

Study Design

Study participants were women with physical, visual or hearing impairments who volunteered from three civic disability organizations and a Catholic disability self-help/mutual aid group. All lived in the Greater Accra Region, either in the city of Accra or its suburbs. Most lived with or were in close contact with their families. Three practiced Islam, and almost half (35 of 75) identified a church or church group as one of their group affiliations. Focus groups were conducted with groups of members and leaders of the organization. Fourteen women completed a series of three to four semi-structured interviews of about 90 minutes to two hours each. Most interviews took place in the women's homes. These interviews provided the primary material for this article. They were supplemented by informal observations in homes, churches and disability group meeting places.

Interviews were semi-structured, using a general topic guide that developed through the course of the research in response to the directions women took in discussing issues and sharing stories that were important to them. Local language interpretation was provided as needed or preferred. By meeting with the women several times over 15 months, I had opportunities to develop trust and rapport, pursue developing themes, collaborate on biographical timelines, seek participant feedback on early analyses, and follow the stories which were unfolding in the women's lives at the time of the research.

The narratives presented here are reconstructed from biographical timelines, field notes, recordings, transcripts and translations of interviews, and post-interview dialogues between the researcher and the research assistant. I developed these narratives in the process of seeking to understand the varied roles that religion played in the women's experiences, survival strategies and identities. I chose to construct these particular narratives for this piece because they spoke eloquently and in varied ways to themes of religion, family, self, and community. I strove for fidelity to the women's self-representations, returning repeatedly to transcripts and field notes throughout the writing process. I also attempted to provide contextual and explanatory material to make the stories communicative to a variety of potential readers. As the women's storytelling was shaped in the first instance by the interview dialogue, and the writer's interpretation inevitably shapes the writing of research texts, I chose not to separate "results" from "analysis" but to interweave the two with an effort to balance analytic transparency with narrative cohesion.

Narrative 1: Esther

Esther, 45 years old at the time of the study, was the mother of two daughters and a son. (Names and identifying details were changed to protect anonymity) Esther lived in her mother's multigenerational household on the outskirts of Accra. Esther spoke her first language, Ga, in our interviews. She had a primary school education and was a 15-year member of a Pentecostal congregation. A quiet, even-tempered woman, Esther worked at home, caring for her young son and grandchildren and assisting her mother and grandmother with their fish mongering work. She considered herself unemployed, however, having run a one-woman food service business prior to her disablement.

Esther had undergone a below-the-knee amputation in her late 20's, and she now walked with a prosthetic leg provided a few years later by her church. The amputation of her leg, necessitated by illness and a series of ineffective herbal treatments, was followed by a series of social and economic losses. Esther's husband gradually abandoned both the marriage and his fatherly responsibilities; he did not explain his actions but ceased to visit her. He eventually instructed his mother to stop her material and social support for Esther as well. A few friends visited and offered encouragement, but most quickly dropped away. As Esther walked along the street using crutches, old friends and acquaintances would even pass without recognizing her. In the face of multiple losses, Esther began grieving and isolating herself at home. This continued for a few years before she ventured out to find new communities of support and solidarity: a church and — later–a disability self-help group. Her hopes at the time of the study were to keep her son in school and to "help myself with something," i.e. to resume supporting herself and her family through work.

Making Sense of Disability

Health status, disability and identity were strongly linked in Esther's stories of her life. Whereas in her youth, Esther had prided herself on strength and vigor, she now saw herself as physically weak and vulnerable. When speaking of herself and her physical impairment, Esther used Ga terms such as "helats" which referred to being a patient or an ill person. Another phrase Esther often used in describing herself and her social status was, "Ib hewal" "I am not well," or literally, I lack health, strength, or power. She was using the most common terms in Ga, and likely had not been exposed to contemporary debates on disability-related terms in the self-help group to which she belonged. Her usages also seemed to make sense in the context of her experience. Several of her health conditions (not least, the infection in her leg) had solidified into lasting impairments due to economic barriers to healthcare. She felt that her disability status contributed to the disregard her daughters now showed her when she sought to advise them. Esther remarked, chuckling ironically, "Mi', mib hewal no hew miwiem hu' hewal b mli." Two possible readings are: "As for me, I am disabled, so that's why my words are disabled." Or, more literally, "As for me, I lack strength, so that is why my words also have no strength in them." When we discussed the issue further, however, Esther mentioned that her daughters' friends were poor influences. She also explained the importance of employment in this picture:

"If you are a disabled person and you work, and go and come, and you have money, won't your child respect you? Yes! But not working, always being in the house, how will your child respect you? She won't respect you."

Seeking healing; Making meaning

Esther had been brought up amidst both Christian and traditional West African spiritual beliefs and did not, at the time of her disablement, belong to an organized religious group. Accordingly, Esther was open to several forms of medicine. When her leg condition started, she and her mother had first sought treatment by an herbalist, or traditional healer. Hospital care would probably have been prohibitive relative to their income [2]. It was her mother-in-law who later intervened and took her to a hospital; by then her condition had advanced to the point that only amputation could be recommended.

In Esther's narrative of the period following the amputation, economic and social implications of her disability were initially the most salient. Her mother, for example, spoke of the condition and Esther's husband's abandonment as hardships like those many others faced, and assured her, "God will be with us, and we will eat." Likewise, friends who visited urged her to be glad for having survived, in an environment in which sudden death from illness was common. At some point, perhaps in pondering an additional impairment that prevented her from completing a vocational training course, Esther concluded that witchcraft must have been at work in her life.

"A human being God has created with all the parts of your body functioning correct, then all of a sudden trouble, trouble, trouble, trouble, one of your legs has to be amputated. That has been accepted; now your finger which you will work with, they want to spoil it; now what! What! What again?"

Esther recalls being visited at home by members of various Christian faiths in the months of isolation following her amputation. In her need for human contact and her limited access to written texts, Esther received but did not embrace these visitors. She regarded them warily, observing how they treated her and doubting their claims to absolute knowledge. She recalled, "I didn't listen to them... They don't like human beings. They don't like disabled people." It was only after a woman neighbor warmly invited her to cease ruminating upon her losses but to "come out on your crutches and seek the presence of God" that Esther ventured out to visit a Pentecostal church. Pentecostal practices in Ghana integrate traditional conceptions of multiple forces active in the world, while identifying such forces and traditional spiritual practices as evil (Meyer, 1994). In this church, Esther found both a vibrant, loving environment and an explanation for the losses she was suffering in her life. Esther received support for her self-image as a person who, like others, was inherently vulnerable. With this, she received the promise of protection. As Esther explained, "If you don't put yourself under any spiritual power, Satan thinks about you, he gets closer to you and makes you suffer problems upon problems." She was neither blamed for her "illness" or poverty, nor promised health or riches if she accepted Christ. By "drawing close to Jesus" through prayer, she experienced both solace and protection from further harm. As will be described below, the church also assisted with her medical and mobility-related expenses. The church thus came to hold an important and lasting role in Esther's life. Reflecting happily upon her choice of this popular sect, she remarked that "where there is power (hewal), there you must place yourself."

Negotiating a Place in the Body of Christ

Like other women with disabilities in this study, Esther was perceived by her congregation as both needing and deserving their help. On one of her first visits to the church, Esther was asked by one of the male church elders to identify her needs. She responded that she felt pain in her shoulders when she walked with crutches, but that she needed work. When the elder hesitated, emphasizing her immediate need, "I told them an artificial leg will do, to make my walking easier." A few weeks later, after church elders met several times to discuss her needs, Esther was brought to stand humbly before the congregation. Congregation members were asked to look upon Esther, search their hearts and be moved to assist her. Church members spontaneously came forward and filled the basket with offerings enough to cover a prosthetic limb and a rehabilitative stay at a Catholic orthopedic hospital. She was driven to and from the hospital in the church elders' cars in what she experienced as an extravagant display of support. When Esther returned from the hospital, again she was brought before the congregation, walking with the new prosthetic leg that they had secured for her. She was received with a joyous outburst of song and praise. Smiling upon her recollection of that moment, she commented in Ga, "Sister, if you had been there, you would have seen that God really lives!"

Esther experienced the church's caring response to her as both powerful and inclusive. The church's charity toward Esther, however, never extended beyond her bodily health and configuration to address her economic concerns. In 15 years of membership, Esther was never assisted with the capital or job training she needed to fully resume her responsibilities and her sense of legitimacy as a mother. Church elders were willing on several occasions to provide assistance with an urgent health need, but with no other matters [3] . Esther seemed to accept this, albeit grudgingly, as the prerogative of church elders. It was only years later, when church members failed to visit her during her long absence after the death of her brother, that Esther began questioning her full inclusion as a member. Even in this case, Esther concluded that this negligence reflected a gradual loss of solidarity and purpose in this particular church community, rather than a sign that she herself was not fully included.

Narrative 2: Lydia

Lydia, in her mid-forties at the beginning of the study, grew up nondisabled in a large polygamous family in a small town. She attended school through the ninth grade and became a nurse's aide in a local hospital. In her early twenties, Lydia married a health official and gave birth to two sons, one of whom died in his infancy. Family interference in treatment of an eye condition, uveitis, in her early thirties left her–in her words–"totally blind." Lydia lost her job and was abandoned by her husband in the course of her disablement. In recent years, she had also evicted her grown son for abusive behavior towards her. When we met, Lydia was living alone in a room that was rented for her by women elders of her mainline Protestant church. It was a short walk from the church grounds. She introduced us to several close women friends, some of whom were also church members. She referred to the church as her newfound "family in Christ." She said that, despite annoyances such as noise from other renters in the house, "at least, I have my peace."

For Lydia, "disability" related to health and ability, as well as to a community. She spoke of herself two ways: as "half, or I may say, three-quarters" of her formerly-sighted self, and as a fully "able" woman. She perceived "disabled" as signifying inability to contribute: "They [nondisabled people] normally see me as disabled, or a sickler. ...I'm also a human being like them. But only just I can't see. ...but I can do, I can do whatever they can do." In a later conversation, when discussing disabled people's organizations, she affirmed that she was disabled. She especially expressed solidarity with others in the blind community. "We are in the same soup! We are in the same kingdom, so I had to join so that we all agitate together!"

Lydia had been unable to return to nurse's aide work, and she now engaged in very small-scale trading of dry goods and homemade toiletries among her network of acquaintances. She said she often had no money for her next meal, but that God would bring her a customer in the last instance. She could rarely afford medical attention when she became ill. Her hopes were to remarry, to find work, and eventually to become a "pastor" or "evangelist."

Lydia's family on her mother's side consisted mainly of traditional religion adherents. Lydia, although a devoted mainline Protestant, believed that curses and witchcraft played some role her life problems. When her son became violent toward her, she interpreted his actions as directed by "those in the village" who wished to destroy her life as well as his. She hesitated to implicate such actions in her blindness, however. She related her blindness to the story of the biblical Job whose faith was tested by God. Perhaps influenced by her years of work as a nurse's aide, she entrusted her eye treatment only to medical doctors, whom she believed to be empowered by God. As will be discussed below, Lydia's family insisted that a curse or witchcraft had caused Lydia's blindness. Her older sister interpreted her refusal to undergo removal of this curse as suggesting that Lydia had "bewitched" herself, i.e. had willfully brought the condition upon herself and thus "into the family." Angry, Lydia retorted, "Oh! Don't you know, they sell this blindness at Makola [market]? [...] They are selling it. And I bought it for 400 thousand [cedis], because I'm impressed with it."

Seeking Sanctuary

Lydia's conflicts with her family originated when Lydia's husband–recognizing that her vision had not been restored through clinical treatment–invited another woman into his home and abandoned Lydia to the care of her mother's family. She explained, "When it start, dear, he helped me to cure. We went to hospital here and there. But when they declared me as blindness, as a totally blindness, there, he left." Lydia's mother was by then remarried and living near Accra, and Lydia was sent to stay in her mother's home village with extended family members. Her family prevented her from attending clinic appointments and forced her to comply with herbalist treatments aimed at removing the curse that they believed to be causing her blindness. She recalled:

"They [were] NOT happy about me! Because I'm blind, and my family,... I don't know what to say. As if they didn't regard you, as if you cannot do it, you are hopeless and useless among them. So as I say, I can do everything on my own! And if you are with them, they will say you cannot do anything! ... So they feel you are hopeless and useless, they don't regard you. It will let you think more and more. You see? Because you are not like that. And if they are pressing you to stay and sit down, not to do anything, then [it's] as if they are dumping you."

Lydia contacted her mother and jumped at her invitation to stay with her and her stepfather in a suburb of Accra. Here, however, she underwent another series of involuntary treatments -- this time, under the direction of her stepfamily and a local Malam. Lydia feared both spiritual and physical harms from these treatments, which involved smoke inhalation. She interpreted them to be the work of Satan. When Lydia heard of a revival in town, she managed to attend and make the contacts she needed. She pleaded her case with local elders of the mainline Protestant church of which she was a member, and obtained a promise of sponsorship from her church. This enabled Lydia to refuse the inhalation treatments. Her stepfamily did not evict her as she had feared, but marginalized her in subtle ways. She recalled, "What they wanted me to do, I said I won't do that. So they do their own thing. I do my own thing. ...And God is taking care of me." Upon the death of the stepfather a few months later, Lydia was asked to vacate her room in his house and her mother returned to her home village. Women elders in the church rented a room for Lydia near the church. They nurtured her while she grieved her multiple losses and later sent her for vocational training at a state-sponsored, residential "School for the Blind."

Through the consistent support of these women, and later through the protective actions of male elders of the church, Lydia came to regard her church as a stand-in family. Reflecting on the support and sanctuary provided by the church, and the freedom of movement she was able to enjoy as a result, she said,

"If I sit and think of it, I know that it is all God. Because, maybe if I was in the family, maybe by this time I would have died. Or, even sadness will kill. So I, I thank the Lord that I'm in this area. And IF they say I should quit from this place, I KNOW my God is able to provide a place for me."

Negotiating a place in the church

Lydia's newfound position as a ward of the church enabled her to enjoy relative freedom of urban life and to pursue activities — such as leadership in the blind persons' advocacy group and frequent prayer gatherings —that she found meaningful. Particularly within the "women's ministry," which met on weekdays for charismatic prayer and Bible study, Lydia found a small space of "communitas," (Turner, 2002) in which status differentials gave way to closeness and sharing on a personal level. Here Lydia worshipped in an unreserved, embodied and egalitarian way with a few other women. She found some challenges, however, in negotiating her position within the larger congregation of her large, hierarchical church. She said that she felt generally included at church, but put the onus on herself:

"It depends. IF you yourself you... all the time during gathering you exult yourself or ... you don't want to be among them, that's why they will not also come closer to you. But me, everyplace they say they are going, I want to go! You see, and through that, you too, you'll not feel burden."

Another quandary had to do with Lydia's work. By the time of our interview, the church's material support for Lydia was waning. Although her petty trading efforts produced only a pittance, given the lack of infrastructure and capital, she believed that elders expected her to begin supporting herself through them. When asked of her plan, she said, "I told the Lord to open avenues for me. To dodge for me, to get market, or... to get work somewhere." She was also contemplating adopting a young girl from a rural family in order to have reliable assistance with marketing her goods and traveling downtown for meetings, in exchange for enabling the girl to attend school. She was unsure whether she could earn enough to support the two of them, however.

Lydia's long-term vision was to serve in the ministry of her church, or to evangelize. Elders of Lydia's church did not lend their support to her ambitions to study for the ministry, citing her limited education — her father had not expected a "return" on his investment for educating daughters -- and the lack of Braille materials. Although she saw the Braille issue in particular as unfair, Lydia hesitated to question their reticence. She deferred to God as her advocate, avoiding forcefulness. It may be that she also saw forcefulness as futile, given her disempowered position relative to the male, able-bodied and more highly educated elders of her church. In dramatic tones, she explained, "Me... if I need something from you, and I know that you are not willing to help, [...] I will put it before God. I will see if the Lord, if it is the will of God, that YOU should help me, God will allow you to come and help me."

When we met a year after this conversation, still no ministerial training plan had materialized. Instead, Lydia had worked around the church's barriers: she had begun street evangelizing and accepting preaching invitations in order to share her gifts -- perhaps also to help make ends meet — while remaining faithful to her church "family". Meanwhile, her son had re-entered her life after four years of separation, mainly through the visits of his wife and their new baby. I asked about her expectations about her relationship with this son, given his past aggression. She responded resolutely, "It will improve, by all means. It will improve. So far as God allows me to see him. I'll talk to him, and he will by all means allow him to come closer to me."

Narrative 3: Mercy

Mercy, a 33 year old Catholic woman with a physical disability, shared a room with her 10 year old daughter and her grandmother in the family house in which she had grown up. In the mornings the house's inner courtyard was full of aunts and cousins sewing or preparing food to sell on the street. Mercy had come through a bout of polio at age 10 with significant weakness in one leg. Although she had once used crutches and worn "calipers," i.e., a leg brace, she had outgrown these implements in her teen years and never had them replaced. She now walked by stabilizing her affected leg with her hand. Mercy was active in the nearby Catholic Church as well as a Catholic self-help group for people with disabilities and a civic disability group. Mercy said she had formerly felt self-conscious about her disability, but that attending gatherings with disabled peers had helped to rid her of both "shyness" and "sadness" about it.

Like Lydia, Mercy had completed a 9th grade (Form 4) education. After her parents divorced, her father neglected to support Mercy and her sister. Her mother had wished to place her in a sewing apprenticeship, but lacked the means to do so. Mercy and her sister instead followed their mother's example and became small-scale traders. As her walking was quite effortful and public transportation was inaccessible to her, Mercy's mobility was limited on most days to the makeshift stand near her house, where she sold fried plantains. Never a prosperous existence, Mercy's life became even more precarious after her mother, who supplemented her income and helped care for her daughter, died in a roadside accident. Mercy's efforts to assert her child support rights were to no avail; she could not afford to send the police multiple times looking for the father of her daughter.

Although her family members adhered to both Christian and traditional beliefs -- both attending church and calling upon a "fetish priest" for particular concerns–Mercy distanced herself from traditional and spiritualist healing methods. Mercy spoke of curses as outdated mythology (although she acknowledged them as a social weapon) and viewed most traditional practitioners and spiritualists as hucksters and profiteers. She said that she once played a trick on a spiritualist by feigning a recent injury to her leg; she laughed as she recounted how he prescribed expensive "healing oil" and told her she could sell the remainder to her friends at profit. Although dishonesty among religious healers is criticized in the media, Mercy was unusually vocal on this point as compared to others in this study. After her mother's death she refused a prohibitively expensive purification ritual to ward off future evils. She had no funds to spare; she was worried about being able to afford to keep her daughter, then aged seven, in school. She recalled, "I said, if it is a curse, let the curse come and kill us!"

Whereas most participants in this study acknowledged spiritual as well as medical or physical explanations for their impairments, Mercy spoke solely of "polio." Mercy's rejection of the idea that curses or witchcraft caused disability was in line with the teachings of her church. It freed her from endless pursuit of spiritual cures, but did not divert her from narratives of normalization. The Catholic self-help group in which Mercy participated often arranged funding for orthopedic surgery and emphasized relationships between "dignity", "self reliance" and "standing on one's own feet." In discussing her disability, Mercy emphasized how her walking had become more difficult since her adolescent years and how it constricted her everyday life. Private transportation was prohibitively expensive, and if she set out to walk somewhere, she felt discouraged by stares and pitying gazes of bystanders. When her daughter stayed out playing too late, she could not go looking for her. When caught out working in a sudden downpour, she could not protect herself. Over a period of months she convinced a hesitant doctor to allow her to undergo a re-straightening of her leg. Although she was informed that surgery would be painful and rehabilitation would require months away from home, she talked excitedly about the prospect of moving freely and affordably about town on public transportation, visiting friends and attending church events. She hoped she could then begin seamstress training, toward a more secure and respectable career.

Negotiating conditions of "help"

Mercy participated in the Charismatic Renewal group at her Catholic church, and said that she felt welcome among them. Whenever possible she traveled with them to attend all-night charismatic services at Catholic churches in other parts of Accra. All-night services are a regular feature of charismatic and Pentecostal churches in Accra, and mainline churches have started to capitulate to this trend. In addition to the spiritual relevance of these gatherings to Mercy, interactions with Renewal group members challenged Mercy to define her desires and boundaries. At times Mercy felt constrained to accept unwanted help, for example assistance to climb stairs into a church where the group was meeting. Mercy preferred to slowly climb on her own, grasping the handrail. And although she feared that falls were more likely with the "help" than without, Mercy had difficulty refusing it. She reflected, "...they want to do something for God. 'Cause God, you know, God want those who help themselves. And God is knowing that he wanted to help you. So he wants to help you so that the blessing will be upon him." Mercy felt unhappily torn between providing this opportunity, i.e., fulfilling the charity-recipient function assigned to her as a woman with disability within the church, and protecting her own pride and safety. At times she accepted unwanted help; at others, she declined. Mercy also reported one positive experience of self-determination within the group. Once during a service she asked for a prayer partner:

"They said, those people who need prayers [should ask.] ... Ok. I call one of our members and ask him that me, I'll be going to surgery. So... I need prayer to support me to go and come. ...So he asked me, do I prefer to go to the surgery, or do I prefer that they keep on praying that I be healed? [He said] since you've been coming, if you have the faith... [But] now he sees that I have the faith in the surgery, so we just pray together."

Rather than acting on his assumption that she was seeking a healing prayer, the man who volunteered asked her what she would like to pray for — in this case, a successful surgery rather than a miracle of healing -- and abided by her wishes. Through interactions such as these, Mercy explored and negotiated her social role as a disabled woman and her rights and obligations as a part of a religious community.

Negotiating support of family and church

Like Lydia and Esther, Mercy relied at times upon financial and in-kind assistance from the church. This was consistent with her history of assistance from the church, starting at age ten. A priest who noticed the weakened condition of Mercy's legs after polio urged her mother to seek surgery and mobility aids for her daughter. Her mother lacked funds, and her father was not involved, so the priest provided church funds to cover their expenses and sent her to a Catholic hospital. Mercy got baptized and grew to be a committed Catholic. Through frequent visits of foreign mission workers to Mercy's home, the church maintained a visible presence in Mercy's life. Contrary to her family's likely impression, however, the church provided only occasional financial aid. After the death of Mercy's mother, none of her mother's siblings came forward to offer economic support for Mercy and her sister.

"They don't think...of us. But they know we are suffering. Even our father...didn't take care of us for a long time. So normally I was happy that I have family. But sometimes I feel sad... I ask myself, do I have a family?"

Mercy's doubt was reinforced when her aunts and cousins failed to offer money or provisions to help with her church-sponsored stay at an orthopedic/rehabilitation hospital, at which no meals would be provided. Her sister Emma remained at Mercy's side throughout months of hospitalization, washing clothes and bedding, and hawking oranges by the roadside to help pay for meals. When Emma needed to finally return home to her children, Mercy relied on families of other patients to help provide for her. Later, a priest to whom Mercy often brought her needs questioned Mercy's role in her family; he urged her to seek out a family benefactor and to contribute her meager earnings to family funerals and birth celebrations in order to remain within their goodwill. Mercy shrugged off his suggestion. She believed that with the death of her mother, she and her siblings had simply dropped from their extended family's circle of concern. Neither Mercy nor the priest seemed to question the role that the church itself may have been playing in loosening these ties; Mercy was simply expected to manage it all.

Accessing Knowledge; Nurturing Hope

For Mercy, the church afforded not only aid and spiritual community but access to knowledge of alternative ways of behaving and interpreting the world around her. She said that through church, she learned to pray to lessen her anxiety about problems in life. She learned Bible stories that she could share with others — a significant social asset in the "Pentecostalite" discursive environment of Accra (Meyer, 2004). Mercy also received instruction about parenting and other social relationships. Like other young women in this study, Mercy emphasized behavioral influences as a benefit of church participation. For example, she spoke proudly of having learned to be less reactive to provocation, and less prone to retribution. By giving her a means to differentiate herself from aunts and cousins she saw as quarrelsome, this stance also enabled her to distance herself emotionally when very little physical space was available and hopes of having her own home seemed remote.

"So, I'm very happy that I-, I've been a Christian, there are things that I've known, and there's things that is not good for me to do. So I've stopped...Cause I know that ... to stay in a family house is not easy. You put something down, ..., when you've come back to take the thing, someone has taken, or, he'll put it some place where you don't like. You don't have mouth to say [4] . It's only that you pray that Lord, one day, one day will hear your prayers and find you a place, then you'll have peace."

The behavioral lessons of church were attractive on another level as well. The Catholic Church in Ghana is strongly associated with participation by the middle class (Haynes, 1996). Its parenting and self-management curriculum seemed to afford Mercy an opportunity to adopt a more modern, middle-class style of affect and interaction than she had learned at home. Mercy dreamed of one day leaving her extended family household for a new marital home, or if not, a simple room and porch just for herself and her daughter.

"I know that...when I marry, I will have another family, so I don't think of them [extended family] again. That is why I'm forcing for myself. Because I know that my daughter is there, she's my family. My sister is also there, she's also my family. I don't have to fight for myself, you see? So that when times and years are going, it will not disturb me in the future."

Mercy also nurtured hopes that, through Catholic school and Sunday school training, Abena might avoid teenage pregnancy, change her carefree ways and learn to "smell like a flower," i.e. to behave in the humble, serious, deferential way that would ingratiate her to others in their Catholic community. Her daughter's prospective social mobility, through career or marriage, was perhaps their last hope of escaping their family home and neighborhood. "Everyday I pray for her, that she may learn to be a Christian," she said. In my last contact with Mercy, she surprised me by stating, "as of now, I have no hopes for the future." She told me that since we had last spoken, Abena had been unable to adjust herself to a fostering arrangement with a middle-class Catholic family, and had been sent back home. This arrangement would have enabled Mercy to reduce her parenting responsibilities in order to start seamstress training. Mercy received her daughter sadly but lovingly, saying, "Ok, if you say you want to be with me in this poverty house, fine. Come home."

Discussion

In this discussion I wish to focus on the contexts and characteristics of agency in the women's stories. Before I proceed, however, I will make a few comments about discourses of cause and cure in the women's narratives. In contrast to previous studies within a single cultural group, a variety of causal narratives related to illness and disability are in circulation in Accra. More often than not, women subscribe to more than one causal explanation simultaneously — usually spiritual and medical. Spiritual explanations were generally tied to either witchcraft or a curse, in either case arising from within closely-related family with no particular malice other than envy. Spiritual explanations also did not necessarily preclude another view, nor did they preclude a sense of entitlement to one's rights.

When I was beginning my research in Accra, I heard several times from men who were leaders in the disability community that, "our women are weak" or "our women are passive." In certain situations, disabled women were quite direct and assertive. But through the course of this research, I came to appreciate the creativity, subtlety and pragmatism with which disabled women in my study, given few apparent options and resources, positioned themselves to better their material status, found places of solace and belonging, and maintained relationships on which, at least for now, they relied. My understanding of women's agency in the context of religious disciplines is informed by Saba Mahmood's (2001) work on women's "docile" agency. In this section, I want to review some ways in which Christian religious participation and related negotiations with family shaped or provided contexts for agency in the women's narratives.

Religion and religious communities occupied central places in the women's experiences. Religious participation held many purposes in the context of the economic and social contingencies of women's lives. Women found company, aesthetic and spiritual life, a break from the monotony of working at home, and an opportunity to feel a part of a larger group. They played out respectable social roles as church members. They had the experience of a trustworthy, unchanging and loving entity beyond the instability and fears of the moment. They gained a sense of accomplishment in bible study and other courses. Women also learned new ways to manage grief, disappointment, and anger when there was no other outlet or way to change the immediate situation.

Disabled women in this study often described themselves as the only person with a disability or one of very few in their congregations. Perhaps in relation to this, they tended not to expect physical or procedural access to their places of worship, and to look upon efforts to accommodate them as voluntary "help" rather than entitlements. In keeping with Mercy's rehabilitative approach to her transportation issues, the women most often sought to accommodate themselves to the church environment and expressed more sensitivity to social interactions than to structural exclusion or inclusion. They also, to a great extent, were willing to play their part in the dramaturgy of the church's healing the sick and providing for the poor. This did not mean that they were utterly comfortable with it. Mercy actively pondered and worked with the issue of how and when she wished to be helped, while avoiding alienating her group members. Lydia's tone of angry resignation when she first described being rejected on grounds of her blindness for further education toward ministry showed another face of disabled women's relationships to their churches: their dependency upon them necessitated that they not risk offending or alienating others. In addition, families and state services offered few if any alternatives to church support. I once awkwardly, and perhaps inadvisably, asked Esther how she felt standing before the church members as the minister exhorted them to be moved to help her. She scowled and asked me a rhetorical question: "Don't you think it's better than standing out begging in the street?"

The women portrayed here, and those in the larger study, could be viewed as capitulating, more or less, to dominant narratives: the women's stories tended to be constructed within, for example, the institutional narratives of Christian religion and rehabilitation. Certainly there were others in their communities, particularly youth, who were more forthright in self advocacy or less interested in church membership. With the exception of disability status, which in many cases they questioned, the women in this research seemed to adapt themselves to their assigned places in social hierarchies (e.g., gender, age, class, race/colonial status), and to demand little more than would normally be allotted given that status. This is to say that, for the most part, the women's stories suggest that they wanted opportunities to fully occupy their gender roles, not to challenge them. Even so, this meant that women expressed and attempted to assert entitlements to inheritance, child support, freedom of mobility, and freedom from abuse and exploitation. Religion could provide language with which to justify their choices in the context of relationships; for example Lydia said she turned away suitors who were "not serious" by arguing "My body is the temple of the Lord!" Also, women did not accept views of themselves by others passively. Their narratives suggest that they reflected actively upon them. In Lydia's case, resisting her family's view of her as "useless among them" entailed physically distancing herself to avoid their control. Mercy used the teachings and narratives of the church to reframe herself positively with respect to her family, as someone who had mastered her temper and who could join in debates about spiritual causality and interventions with others.

While the disabled women who participated in this research adopted fairly orthodox narratives about their gender and disability roles, they did so somewhat flexibly. Mercy recognized her obligation to provide blessings to others as one that she could withhold at times. Devoutly religious women in the study were flexible in their adherence to church teachings when an extramarital relationship brought intimacy and assistance to raise a child. There was also flexibility in the way that women held their hopes. Once when I checked in with Lydia about her seminary prospects, she joked, "We may have to sell fast and sell out." By this she said she meant that it was unlikely, and she would do well to let go of that particular dream. The fact that she could joke about this, her spiritual calling, is emblematic of flexibility found throughout the women's narratives. Given multiple contingencies, disabled women learned to hold on to hopes for a more secure and satisfying future, but loosely attach to specific aims. As mentioned above, they were often aware of social or legal entitlements, for example to child support or marital separation compensation, but often they realized that the self-advocacy required to assert that entitlement might exceed their resources, or endanger hierarchical relationships with elders in their churches or families. "God" remained a symbol of constancy and hope when all other specific hopes had to be put aside for the time being.

This in turn brings the discussion to the status of disability groups and disability community in the women's lives relative to the church. Although Lydia's narrative shows this more clearly than Mercy's or Esther's, disability groups did serve as crucial resources for solidarity, relief, and positive identity to each of the women who participated in the study. Relationships with disabled peers were often trusted and valued almost on par with sibling relationships. That said, however, fellow group members often lived at some distance from one another, and many groups met just once a month. Churches, in contrast, tended to be close by and to have activities most days of the week. Churches also offered material and educational resources unparalleled by the disability groups. And while religious narratives and practices had a great influence on the structures and activities of disability groups in Accra, including the civic-based groups, disability groups were yet to have a marked influence on the discourses of churches. An exception (regrettably, not depicted here) was in the deaf church which overlapped markedly with the deaf persons' organization.

Conclusion

My efforts to understand and write about the experiences of women with disabilities in Ghana is motivated in part by the transnational feminist call to "pay attention to and think from the space of some of the most disenfranchised communities of women," (Mohanty, 2003, p. 231) in order to "read up the ladder of privilege" (ibid, p. 231) and develop a more grounded and comprehensive vision of social justice. Similarly, Lila Abu-Lugod (1990) argues that anthropology can utilize resistance as "diagnostic of power." Urban women with disabilities in Ghana find themselves both empowered and disempowered relative to church participation; disempowerment occurs when few options for meeting material needs make church participation more a survival mandate than a choice, and when issues arise in church with important implications for identity and well-being, but which individuals cannot address on their own without risk to their membership. Given the influential role of churches in public life in Ghana and elsewhere, collective, targeted advocacy of disabled women or disabled people toward clergy and lay leaders may accomplish a dual purpose: foster awareness of disability and social justice issues among the Ghanaian public, and help to pave the way for fuller and more respectful inclusion of women and men with disabilities in religious communities. Additionally, governments should ensure that women who do not choose to belong to a congregation, or remain a member, have other sources through which to access health care, education and credit for business.

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Endnotes

1 I would like to express my appreciation to the women who shared their stories and their time in this research. Thanks to Sarah Anderson and others who assisted with field interviews, translation and transcription. Thanks to Carol Gill, Vandana Chaudhry, Cindy Wu and Joe Becker and anonymous reviewers who were generous and patient readers of earlier drafts of this article. Thanks to Susan Magasi whose ethnographic work with disabled women in Chicago introduced me to the rich construct of negotiation. This work was supported by a United States J. William Fulbright Grant and the Bucher Memorial Award for Qualitative Research in Social Process. Fieldwork in Accra would not have been possible without the generous hospitality of Robert Dadeboe and family, and the collaboration of Ghana Federation of the Disabled, Ghana Association of the Blind, Ghana National Association of the Deaf, Ghana Society of the Physically Disabled, and Hope for Life/SMA Ministries.
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2 Under Ghana's Economic Recovery Plan since the early 1980's, subsidies for health and social welfare programs declined and user fees for health care services were required at the time of service delivery. This fee structure has constituted a major barrier to medical care for persons with lower incomes. Ghana is now in the process of implementing a national health insurance scheme to broaden access to primary health care. People with disabilities are promised free healthcare under the recently passed Disability Act (2006), but the law allows delay in implementation until 2016.
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3 The lack of attention of churches to broader social and economic needs of members—particularly needs for work training and employment -- has been part of a general critique of churches in Ghana for some time; thus, the unresponsiveness of church elders to Esther's prioritization of her work needs can not be absolutely attributed to her disability status but may be part of this larger trend.
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4 This expression refers to the right to speak.
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Copyright (c) 2006 Denise M. Nepveux



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