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Intellectual and Developmental Disabilities in Kinshasa, Democratic Republic of the Congo: Causality and Implications for Resilience and Support Heather M. Aldersey, H. Rutherford Turnbull III, and Ann P. Turnbull

Abstract This article reports results of a 7-month qualitative study on intellectual and related developmental disabilities in Kinshasa, Democratic Republic of the Congo, particularly as they relate to the causes and meaning of intellectual and developmental disabilities (IDD). This study raises important questions related to the understanding of resilience of persons affected by IDD and the nature and purpose of support they use or desire. Key Words:

intelkctual and developmental disability; causality; resilience; support; Kinshasa; Democratic Republic of the Congo; Africa

Ideas about disability causation often include nonbiomedical understandings, yet many disability support and community interventions fail to take sucb explanations into consideration. Understanding wby an individual bas a disability can be critically important to people witb disabilities, tbeir family, and tbe wider community. Future support for people witb disabilities may be more impactful if support providers aim for a more bolistic understanding of disability causality. In tbis article, we present findings related to tbe following researcb question: How do people witb intellectual and developmental disabilities (IDD), tbeir families, and otber individuals in Kinsbasa, Democratic Republic of tbe Congo (DRC), understand tbe causes and meaning of IDD? Tbese findings emerged from a wider study tbat sougbt to better understand tbe personbood of people witb IDD and support in Kinsbasa, DRC.

Kinshasa, DRC Tbe DRG is tbe second largest Frencb-speaking country in tbe world (Trefon, 2004). It was tbe site of two successive and complex wars between 1996 and 2003, and unrest continues along its eastern borders today. Scbolars bave cbaracterized tbe DRC as baving a weak or absent national government, especially in terms of provision of social services tbat are typically governmentoperated or supported, sucb as education, sewage.

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road transport, and electricity (de Coster, 2012; Titeca &. de Herdt, 2011). Instead, tbe DRC is a setting wbere residents invent new social and economic survival strategies, largely under tbe "sbadow" of government, in wbicb tbe state bas retreated from tbe public domain and bas an inability to provide basic public services (Ferguson, 2006; Titeca & de Herdt, 2011; Trefon, 2004). Grassroots organizations, local and international nongovernmental organizations (NGOs), and community-based solidarity networks bave emerged as important entities tbat fulfill tbe duties typically performed by national government (Canadian International Development Agency, 2012; Titeca & de Herdt, 2011; Trefon, 2011). Kinsbasa, tbe capital city of tbe DRC, is one of tbe largest cities in sub-Sabaran Africa. Altbougb it was populated by barely 500,000 people at tbe time of independence, Kinsbasa's population bas now exceeded nine million, and amounts to over 12% of tbe population of tbe entire country (de Herdt & Marivoet, 2011). Tbe majority of Kinsbasa residents (Kinois) live on less tban $50 per montb, wbicb is barely enougb to cover food expenses (Trefon, 2004). Indeed, in many ways, Kinsbasa is a city tbat many see as a city of sacrifice. For example, [Kinois] do witbout fuel wood, tbey do witbout primary bealtb services and tbey do witbout

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safe drinking water. They also do without political participation, security, leisure, or the ability to organize their time as they would like. Parents are not only forced to decide which children will be able to go to school in a given year, they also have to decide who shall eat one day and who shall eat the next. (Trefon, 2004, p. 4) Kinshasa residents constantly and pragmatically order and reorder their lives as active participants in their own social agenda. Indeed, residents "create, define, and transform new sites of transportation, new configurations of interlaced spatialities, new public spaces of work and relaxation, new itineraries and clusters of relations, new social interactions, new regimes of knowledge and power" (De Boeck, 2011, p. 271). In Kinshasa, the life of every individual is tied to a range of relationships, in order to ensure one's survival. Many of these relationships are defined by family and kinship ties, but many others have to do with the specific ways in which one inserts oneself—has to insert oneself—in multiple, complex, often overlapping, networks that include friends, neighbors, colleagues, acquaintances, members of one's church congregation, professional relations, and so on. ... This capacity "to belong," to socially posit oneself within as many different collectivities as possible, and thereby to obliterate anonymity—in itself an almost unthinkable concept— is crucial to survive and to exist beyond the raw reality of mere survival and bare life. (De Boeck, 2011, p. 273) The importance of relationships is particularly relevant when understanding causality of disability in a Kinshasa context, as in this article we show that Kinois often believe disability to result from damaged relationships.

The Construction of Meaning About Disability

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the boundaries of a worldview that includes ideas of life and death, this world and the supernatural, social relations, causal attributions, and a categorization of the extraordinary body" (Devlieger, 2010, p. 77). Further, causality in non-Western contexts involves elements notably absent from Western understandings: Personalistic causal agents in the form of spirits or human beings reflect the relational nature of personhood in these settings. Individuals are so fundamentally involved with other beings that their bodies and minds are readily affected by agents outside themselves. Just as causes are relational, so are the life expectations against which people with disabilities are measured. (Ingstad & Whyte, 1995, p. 37) In African countries, the "outside themselves" understanding involves attributions of a variety of causes, including sorcery and fetishism. A study of the perception of causes of illness in Central Africa (Sabuni, 2007) identifled the following as the primary causal understandings of illness: natural; physical and environmental; social; broken taboos; heredity; witchcraft, sorcery, and poisoning; and punishment from ancestors. These seven categories are all classifled as either natural or metaphysical (Sabuni, 2007). Similarly, understanding illness and impairment in Botswana includes incidents of "misfortune" (including disability and illness) that are "easily understood as the outcome of natural processes or as part of the mysterious logic of Modimo [sorcery]" (Livingston, 2005, p. 86). Further, mental disorders in eastern Uganda are often dealt with in an explanatory idiom that posits spirit and human causes for misfortune, in which spirit refers to the ancestors and the use of sorcery (Whyte, 1998). Still further, "an explanation ofthe cause of a [physical] disability [among members of the Songye population in the DRC] can never be limited to the biomédical level. The explanation is part of a broader inclusive view. Although a biomédical explanation may be accepted, that does not mean it is sufficient" (Devlieger, 1995, p. 103). In a Kinshasa-specific context.

This study contributes to scholarship about the explanation and treatment of disability and misfortune in Africa. The research "has shown the distinctive cosmologies, rituals, and social relationships of African societies" (Whyte, 1995, p. 234). Indeed, "local African concepts of disability reflect

Sorcellerie (sorcery) is a mostly nocturnal activity that cannot necessarily be controlled. It is the bulimia of evil and a way of life. Eétichisme, by contrast, is action that is premeditated, voluntary and usually limited

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Table 1 Adaptation of AAIDD Definition of Intellectual Disability

Criterion Intellectual functioning

Adaptive behavior

Age of onset

AAIDD

Intellectual ñinctioning that is significantly below "An IQ score that is approximately what is normative in Kinshasa, as reported by two standard deviations below the school records, medical records, and other mean, considering the standard error of measurement for the specific relevant records and information, as well as assessment instruments used and interviews with a person or persons who know the instruments' strengths and the individual well. limitations" (AAIDD, 2010, p. 27). Significant (below the norm) difficulties in "Performance on a standardized conceptual skills (language, reading and writing, measure of adaptive behavior money, time, number concepts), social skills that is normed on the general (interpersonal skills, social responsibility, selfpopulation including people with and without ID that is approximately esteem, gullibility, naivete, follows mles/obeys laws, avoids being victimized, social problem 2 SD below the mean of either (a) solving), and practical skills (personal eare, one ofthe following three types of occupational skills, use of money, safety, health adaptive behavior: conceptual, care, transportation, schedules/routines, telephone social, and practical or (b) an use) as measured by direct observation, school overall score on a standardized records, employment records, and other relevant measure of conceptual, social, records and information, as well as interviews with and practical skills" (AAIDD, a person or persons who know the individual well. 2010, p. 27) Prior to age 18 Prior to age 18

in space and time. ... Both terms are part of a larger cluster of words having to do with the occult. Like the term 'witchcraft' in English, the word fetiche is used with a wide range of meanings in Kinshasa. (White, 2004, p- 175) Fetiche is part of the moral universe of many who live in Kinshasa: If it is performed properly (e.g., the sacrifice of something of close personal value such as a friend or family memher), it can contribute to success in politics, love, money, and music (White, 2004).

Methods This study draws from data from participant observation (in homes, on the streets, in special schools and vocational centers for people with IDD, and during association parent meetings and outings with the children) and semistructured interviews.

Sampling The first author conducted interviews with 19 adults with IDD, 24 family members of a person

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Kinshasa adaptation

with IDD, and 60 community memhers: 24 without experience with people with IDD (e.g., vendors, taxi drivers, pastors) and 36 with experience with people with IDD (e.g., psychologists, nurses, teachers). A person with IDD has intellectual function and adaptive hehavior (i.e., everyday social and practical skills) that differ significantly from what is normative in his or her society; this difference originates before the age of 18 (American Association on Intellectual and Developmental Disahilities, 2011). Although all individuals with disabilities in this study had some type of a developmental disahility, others were unable to demonstrate their intellectual capacities, hut, because their families regarded them as having ID, we included them as respondents. Given that constructs of disahility are culturally variable (Ingstad & Whyte, 1995) and that it was heyond the scope of this study and our expertise to administer such instruments as IQ tests and tests of adaptive hehavior, Tahle 1 demonstrates how we determined the presence of IDD. This method is pragmatic: The DRG lacks resources, personnel.

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Table 2 Participant Sampling Grid Demographic Gender Neighborhood

Experience with IDD

Family structure

People with IDD Male Female City center (e.g., Gomhe) City outskirts (e.g., Kimbanseke) N/A

Family members

Community members

Male Female City center City outskirts

Male Female City center City outskirts

N/A

Disability service provider, iriend(s) or memher has extended family member with IDD, no experience with IDD N/A

Nuclear (mother/father), Nuclear (mother/father), single parent, grandparent- single parent, headed, extended familygrandparent-headed, headed extended family-headed

and infrastructure that, in North American and European countries, permit the use of sophisticated psychometrics. Indeed, as Njenga (2009) noted, the diagnosis of IDD in many African countries is complicated hy a number of factors, such as the limited numher of trained psychiatrists and psychologists as a whole on the continent. Sampling of participants for all aspects of the study was theoretical: We followed guidance from Agar (2008) who advised choosing participants whose perspectives would supplement data from prior interviews, enahling the researcher to gain a deeper understanding of concepts emerging from the research. As the research progressed, we selected community participants strategically to test or elahorate on emerging themes. For example, when a significant numher of family and community memhers mentioned that the Pentecostal or locally grown revivalist churches were at the hase of much of the sorcery accusations towards individuals with IDD, we recruited pastors from such churches in a variety of neighborhoods. We also strategically considered gender, neighhorhood of residence (typically an indicator of socioeconomic status), type and amount of experience with IDD, and family structure. Tahle 2 provides further information about participant sampling. To the maximum extent practicahle in light of the varying capacities of the adults with IDD, we solicited responses from them. When they were partially ahle to respond, we solicited their responses and then sought clarification or corrohoration from

H. M. Aldersey, H. R. TurnbuU III, and A. P. TumbuU

family surrogates who were, on the whole, the primary caregivers (e.g., a mother, a father, a grandparent, or a sihling). We sampled participants from a range of varied sources. First, with the help of leaders from a parent self-help association, ANAPEHMCO (L'Association Nationale des Parents des Enfants Vivant Avec Handicap Mentale en RDC), and through contacts of our Congolese research assistant, Delphine Assumani, we identified the eight families who welcomed us in their homes for participant observation. Ms. Assumani also facilitated our access to the specialized schools and centers (Bon Depart, Le Centre d'Evaluation et d'Intervention pour Enfants présentant le Handicap Mental et/ou l'Autisme Villages Bondeko, Kikesa, and Koli), vouching for us not only in her research capacity, hut also as an officer (secretary) of the Association of Centers for People with Disahilities in Central Africa and a person with a disahility herself.

Data Collection For the first 2 months of study, the first author engaged solely in participant observation in family homes and the wider community. She examined the similarities and differences among people with IDD and the families and communities around them and noted their interactions with other community memhers with and without disahilities, including family memhers, friends, and neighhors. Although she spent an entire week (from sun up to sun down) with each of the eight families, she

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continued her interaction with and observation of these families after the initial week, ohserving their children in schools, participating in association meetings, and making short social visits to the family home. She also ohserved in eight different schools that provide special education services to children with IDD. The first author wrote up field notes every evening or as soon as possihle after the experience, and the second and third authors provided ongoing feedhack on the field notes. Field notes included descriptions of people, places, interactions, and events in as much detail as possihle; important researcher reflections or rich points; preliminary analysis (as relevant); and identification of areas for further exploration (Agar, 2008). Tahle 3 contains the semistructured interview protocol. The goal of the questions was to elicit knowledge related to the construction of personhood of people with IDD and support for people with IDD and their families in Kinshasa (the wider study within which findings ahout causality emerged). Semistructured interviews also huilt upon themes already identified in participant ohservation. The interviews were audio-recorded and transcrihed.

Data Analysis We conducted data analysis concurrently and recursively within and across ohservations and interviews, using the constant comparative method of data analysis (Charniaz, 2006) to identify themes as they emerged. Specifically, each step of the data analysis process directed our next steps (Maxwell, 2005). For example, as the first author wrote up field notes and transcrihed interviews, we engaged in preliminary analysis of the interviews and field notes together. From this preliminary analysis, we noted ohservations we wanted to make in the future and new questions that we needed to ask. We imported all field notes, memos, and interview transcripts into qualitative analysis software (NVivo; QSR International, Burlington, MA). Using NVivo, we conducted a systematic line-hy-line categorization of the data into codes. We started coding with a coding scheme developed from the specific interview questions and hroader domains of ohservation that were developed during data collection. Next, we engaged in open coding of the transcripts and field notes to determine new hroad topics and themes. We discussed these themes and came to

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consensus on any discrepancies or disagreements. Last, we used focused coding to determine suhthemes within the wider code of "causality." We determined final codes for this article and identified and resolved any discrepancies in coding and analysis in regular team meetings. At the conclusion of data collection, we invited all participants to attend a summary of initial findings. Approximately 60 people (59%) attended. After the presentation, we encouraged participant discussion and provided paper surveys with open-ended questions for written reactions. Feedhack on the preliminary findings was positive, and no one stated major disagreements. A numher of participants requested that we not focus too much on positives and implored us to ensure we also represent the negative realities of the lives of people with IDD in Kinshasa. Participants requested us to use data from this and future studies to improve the quality of life of people and families affected hy IDD.

Ethical Considerations This study was approved hy the University of Kansas Institutional Review Board hefore the commencement of data collection. All participants signed an informed consent form written in hoth French and Lingala (surrogates signed for the participants who could not demonstrate ahility to provide informed consent). Participants were offered the option to either keep their identity confidential or waive this right to confidentiality. Those who chose to remain confidential (approximately 10%) had pseudonyms applied to their data.

Results In Kinshasa, amhiguity around life occurrences is inconceivahle. Indeed, "at the hase of every prohlem, there is always a cause" (Papy, no experience with disahility). Most participants would not accept that IDD "just happened." Here, the cultural world is hifurcated into the visihle and the invisible. The invisible world is accessible to only those with special power hecause of their roles: ancestors, chiefs, pastors, traditional healers, and sorcerers. In contrast to other "initiated" individuals, sorcerers use the invisible world for evil, not for good. Understanding distinctions around the visihle and invisihle worlds is important in

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understanding the construction of meaning around IDD in Kinshasa. In general, participants understood the causation of IDD in biomédical (visible) or metaphysical (invisible) terms, or a combination of both.

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The majority of respondents understood that there are biomédical causes of IDD. Most families could trace the medical cause of their family member's disability. They spoke of illness in their children's early years, unsuccessful abortion attempts, medical incompetence during childbirth, and inaccurate or lack of early diagnosis and treatment of an illness that resulted in their family member's IDD. The family's narrative of sickness was sometimes passed along to the individual with IDD, who then integrated, this narrative into his or her own narrative of self. I was bom with a handicap on the mental side. Everything started when I was 2 years old. One morning, I woke up well (normally), very well. Suddenly like that a little hot. Of one degree or two degrees. Fever. They give me medicine, and I take it. It went beyond fever. ... We went to the hospital, the university clinic, and that became something else. On the level of nerves. When they noticed, they did an operation. (Kalambaye, adult with IDD)

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Most community members also believed that IDD arises from biomédical causes, especially malaria, meningitis, chromosomal and/or genetic abnormalities, behavior of the mother during the pregnancy, and failed abortion attempts. When asked about what can be done for people with IDD in society, adults, family members, and community members often spoke in terms of medical care and other sources of rehabilitation consistent with a medical (curative) model of disability (Kaplan, 2000). Adults and family members also demonstrated this medical understanding of disability; in their ongoing and often daily interactions with doctors, psychologists, physical therapists, and other medical rehabilitation professionals, they sought interventions that would heal the person with IDD or remediate the effects of a disability. Indeed, some respondents with IDD attributed their disability to biological reasons alone. Most respondents, however, complemented their biomédical

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understanding with a metaphysical understanding of IDD.

Metaphysical In Kinshasa, narratives of sorcery,/etiche (i.e., use of the occult and magical powers to protect or aid the user), and the hreaking of tahoos are used on a daily hasis to understand hoth fortune and misfortune. Gommunity memhers, regardless of education level, age, or gender, vehemently asserted that oftentimes the true cause of a person's IDD was metaphysical. Metaphysical causes of IDD come in a numher of forms: (a) the person him or herself is a sorcerer, (h) a member of the family utilizes fetish, (c) an extended family member or member of the community has inflicted this family with disability through the use of fetish, (d) the family has broken a social or ancestral taboo, or a combination of more than one of these causes. Individual as sorcerer. Those who practice sorcery—any person who demonstrates challenging hehavior or acts outside of social norms, thus, a person with IDD—are regarded as the sources of misfortune, suffering, and destruction. Their destructive behavior often included "deliberately" wrecking televisions, phones, and other household items or "deliherately" creating work for the family through incontinence or uncleanliness. They are sometimes thought to "deliherately" cause family strife and discord or to impose poverty hy requiring a family to expend a great deal of money for health care and medication for its member with IDD. Even if there is not a direct link hetween the individual with IDD and the misfortune, such as a death in the family or the loss of the primary hreadwinner's joh, the person with IDD is sometimes suspected of being a sorcerer and bringing this misfortune to the family. Individuals with IDD who were accused of heing sorcerers were often thought to he "abnormal" and unfortunate during the day (e.g., lower intelligence, drooling, unahle to communicate, different facial features) hut to have desirahle traits and enjoy lives of extreme fortune at night (e.g., heing beautiful, rich, powerful, married, or well-traveled). Bitanga soyi (drooling) during the day, yes, the night he is no longer bitanga soyi. He is a boss, at night he manages husinesses. At night, he is rich. He is a hoss, he travels a lot, all this during

H. M. Aldersey, H. R. TurnbuU III, and A. P. TurnbuU

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the night, hut you see him during the day, he comes and begs me for 100 francs so that I give it to him and then he has power over me and he can block me. He can hlock my husiness. Na kopesa te, I cannot give, ok, it's like that. (Benjamin, disahility support provider) Adults with IDD themselves often lamented heing constantly accused of sorcery. "Ah! They insult me, that I touched the occult, that I am a sorcerer. There are many people who say this. Prohlems." (Nsimha, adult with IDD). All of the adults with IDD with whom we spoke forcefully and disdainfully denied that they had any experience with sorcery or the occult. Although some respondents argued that people with IDD can be sorcerers, many other participants who believed that IDD can he caused hy sorcery did not helieve that the individual him or herself was the sorcerer. According to many, people with IDD are the victims; someone else caused them to he the way they are. Family member use of fetish. Families who enjoy a certain amount of fortune in life, either through wealth, power, or success, are often seen as using fetishes and the powers of the occult to gain this level of fortune. One aspect of this use of the occult is the necessity of sacrifice. In this study, fetish-related sacrifice was the sacrifice of a child's intellect. They [another person's family] had four [children with IDD]! And the parents had a lot of money. They had a two-story house. But many people said that it was [the father] who had sacrificed his children to have that money. Me too, I believed that! Yes! He had sacrificed his children. Why had he done that? If I saw those children, I would say "Why would he do that? All four children! He did that, hut, that money, who will he eat with, since all his children have hecome like that? That is not good." I always said that. But when I had my own child with the same prohlems, I did not go [to the occult] to look for money. Even my hushand said: "Me too, I thought that... we said that children came from people who go and look for fetishers so that they can have money. Why do I have a similar case here? Do I have a lot of money? Did I tum to fetishers to get money? How could this have come into my own home?" Voila. [Interviewer: So, having a child with IDD changed your mind ahout how

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it is caused.] Yes. It changed our minds. (Marte, mother of child with IDD) A numher of families had narratives similar to that expressed above. Before they had their child with a disahility, they looked down on families who had children with IDD hecause they helieved that the family had sacrificed their child out of greed. When, however, a child with IDD came into their own family, they hegan to reconsider their heliefs about causation of disability because they knew that they themselves had not done anything out of the ordinary, and they still had a child with IDD. No family in this study accepted that they personally used sorcery or fetishes; many vehemently and defensively argued they did not. However, they often accepted that others may have used fetish against them. In contrast with some who changed their minds after IDD came into their family, others would still argue that although it was not true for their family, other families had surely used fetishes and caused the IDD. The stigma and suspicions surrounding the causality of IDD were particularly fierce when a family had money and treated the child with a disahility with love, as outsiders would believe this loving treatment was out of guilt for having sacrificed the child with IDD to gain the family's wealth or status. If the family was poor, it was usual to suspect the family's friends, neighhors, or extended family as having caused the disahility. Fetish use from extended family and neighbors. Kinois often attribute IDD to discord and jealousy in the extended family (e.g., in-laws, aunts, uncles) or with neighbors. So, for example, a neighhor is jealous of a particular family and uses fetish to inflict suffering on this family in the form of a child with IDD. Or, an uncle of a hride is displeased ahout the size of or his share of the bride's dowry and curses the new family so they will have a child with a disahility. Here, we cannot think that a child acquired a disability on accident. One aspect of this can he, there is someone who had bad intentions, who cast spells on you during the pregnancy and the child hecame disahled in the womh. Someone who is jealous of you will give you this child to make you suffer. So that is one aspect. People say "No, this child has a disahility; there was sorcery in the family. Either it was an aunt or uncle or a nephew or even a neighhor who is jealous of us. They

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mined the fetus inside the womb." This child will come out disahled. He will suck all your money so that you will hecome poor. (Salome, mother of child with IDD) Participants often expressed discomfort about cooking on their open-air stoves in compounds that were shared with other families hecause neighbors who had not eaten sufficiently may hecome resentful and jealous and cast a spell on the family to make them suffer as well. IDD as a result of broken taboos. There also is a helief that IDD can result because individuals break social taboos. For example, pregnant women in particular are often told to avoid eating certain foods or engaging in various activities lest they harm their unhom child. For example, pregnant women often avoid looking at their member with IDD or walking across ground that was wet from the water the member with IDD had used for bathing hecause they feared the disahility would he passed on to their own children: When we come across a pregnant woman, she cannot look at you. She cannot, for example, touch [my son] Jeremy and that is why that sometimes causes us prohlems with puhlic transportation. We get on a hus with our disahled child; if there is a pregnant woman, she will want to get off the hus hecause a sorcerer has entered the hus. "No, that useless child he will cause my own child to be a sorcerer." (Salome, mother of child with IDD) Sometimes social tahoos are particularly related to marriage and family life and often determined along ethnic lines. For example, within some ethnicities in Kinshasa, if a woman commits adultery and does not undergo various rituals (e.g., asking forgiveness of chiefs or elders, leaving the house completely nude, confessing the adultery, and suffering the humiliating stares of others), it is helieved that she will have a child with IDD. Similarly, if a hushand does not give a dowry (or if the dowry is not adequate) or if the couple does not follow other traditional norms related to such life transitions of marriage and death, some believe that they risk having a child with IDD as a result.

Both Biomédical and Metaphysical With the exception of a handful of individuals who helieved solely in biomédical causation or solely in

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metaphysical causation, most respondents helieved that IDD is caused hy hoth biomédical and metaphysical reasons. One mother explained that her daughter fell ill and spent 12 days in intensive care and had enormous amounts of injections and transfusions, yet nothing seemed to help in lowering her temperature. Then she went in a coma, and the nurse told me "you need to pray" hecause all the medical exams, there wasn't... there was malaria, yes, hut malaria couldn't hring a person to that level, she told me "You need to pray, you need to pray" and from that time on, I started to helieve in sorcery. And plus, ... one of my uncles called me and said "You see what happened to your daughter. It is hecause you refused to allow her father to give dowry money." (Futfu, mother of adult with IDD) Futfu's uncle confessed that he caused her child's disahility hecause he was unhappy with the father of the child for not paying a dowry to the mother's side of the family. He admitted to leaving the house naked in the middle of the night and invoking the occult to cause the child to hecome ill, intending for the child to die. That's why my daughter has hecome the way she is. But if I had said to my daughter's father to give my uncle the money, my uncle knows how to make my child hecome normal again.... So it was from that that I understood that sorcery exists. Before I didn't helieve, hut from [the inexplicahle fever] and plus my uncle himself told me... plus malaria could not paralyze her like that, never. If it was even meningitis [it wouldn't have done this].

using an explicit medical model to explain their memher's hehavior, even if they did not helieve their child was sick, "damaged," or in need of medical intervention, simply so that they could avoid the Manning and stigma, especially when cause allegedly arose from metaphysical origins. Causation also explains why a family may keep their memher with IDD at home or out of sight, fearing that others will helieve that family use of occult caused the disahility. Causation also has an impact on the support that families use and need. For example, families who helieve in a purely hiomedical cause may see the individual with IDD as damaged and in need of healing; they may seek support from the health care sector. Families who helieve in a purely metaphysical cause may seek support from churches or traditional healers or may attempt to examine and heal damaged relationships rather than seeing the individual as "damaged." Families who helieve IDD to he a result of a combination of factors may engage in more pluralistic support-seeking patterns. Families who helieve their memher with IDD to he a sorcerer may not helieve that support to improve this individual's quality of life is necessary at all. If families helieve one type of support is not effective, they may shift attribution from one perspective to another (e.g., hiological to metaphysical), and then need different kinds of support (Persyn & Ladriere, 2004). In this way, support can also shape the meaning of IDD.

Limitations

Kinois' understanding of the meaning and causes of IDD can impact how memhers of society treat a person with IDD. Families would often insist on

Given that Kinshasa is one of the largest urhan areas on the continent of Africa, it follows that this study, which sampled a population of just 102 individuals, is not representative of experiences in the entire city. Furthermore, participants did not discuss "God's will" when understanding causation of disahility (rather, when Christian religion was used as the framework for disahility, it was helieved to he the work of the "devil"). This may he an important omission and is another indicator that our sample does not capture the viewpoints of the entire city of Kinshasa. In addition, the attitudes represented in this study may have heen affected hy the position of the researchers. Fearing that the researcher would judge them, participants may not have heen completely candid. For example, no families admitted that they used sorcery, and few admitted to even using

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TTiis story illustrates that the mother accepted that her child's disahility occurred hecause she had a high fever and was in a coma for 12 days. The cause of the disahility was from true hiomedical issues; however, she helieved that the reason these hiomedical issues came ahout was hecause her uncle had cast a spell to hring ahout family misfortune.

Discussion

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traditional forms of bealing in complement to or instead of biomédical bealing. Tbis finding contrasts witb otber literature on bealtb and bealing practices in Kinsbasa (e.g., Corin, 1979; Deviscb, 2005). It also aligns witb Sabuni's (2007) observations of causation of illness in central Africa: "People tell one person one cause and anotber a different cause, and tbis depends on tbe background of tbe person being told, for example, a pastor, medical professional, or close friend" (p. 1289). Finally, given tbat metapbysical paradigms of disability do not align witb Western cosmology, tbe Western researcber may not bave been able to elicit a large quantity of candid responses, or may bave interpreted respondents' comments tbrougb a Western and, tbus, skewed lens. By contrast, tbe researcber's position may bave permitted candor tbat would not be available to researcbers for wbom tbe meanings and causality are common.

Implications Research. Tbis study's findings on meaning and causality of IDD in Kinsbasa contribute an additional confirmation to tbe body of literature on beliefs surrounding disability in Africa. Tbis study may also expand understandings about family coping and resilience, a body of literature wbicb, to date, bas been dominated by studies in Western contexts. Researcb on family coping and resilience seeks to understand wby some families overcome and sometimes become stronger tbrougb adversity, wbereas otbers do not (Cowan, Cowan, &. Scbulz, 1996; Patterson, 2002; Walsb, 2006). Family resilience is a flexible process indicating tbe family's strengtb in different circumstances and at different points during tbe life cycle. Walsb (2006) identified tbree key factors tbat contribute to a family's resiliency: (a) making meaning of adversity, (b) affirming strengtb and keeping a positive outlook, and (c) baving spirituality and a belief system. Findings in tbis article align witb tbeory wbicb suggests tbat seeking causal attributions for aversive experiences may belp individuals to gain or reestablisb a sense of control (Taylor, Licbtman, & Wood, 1984) or order in tbeir environment (Rotbbaum, Weisz, & Snyder, 1982). Biomédical explanations may enable one to believe tbat bealing or medical intervention can occur; metapbysical explanations may enable one to seek out

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tbe source (e.g., problems witb a dowry, fatber used fetisbes) and work to repair damaged relationsbips and rigbt wrongs (e.g., pay more dowry money to disgruntled family members, go to cburcb and pray for forgiveness for past fetisb use). Perbaps tbe strongest tie tbat tbese findings bave to tbe resilience literature is tbrougb discussions of coping, wbicb is an element of resilience. Indeed, a wide body of literature, from largely Western contexts, bas demonstrated tbat families wbo draw from spiritual sources to understand causation of IDD may experience greater levels of positive coping skills (Bayat, 2007; DeFrain, 1999; Summers, Bebr, & Tumbull, 1989). Taylor (1983) argued tbat wben people experience personal tragedies or setbacks, tbey respond witb cognitively adaptive efforts tbat may enable tbem to return to or exceed tbeir previous level of psycbological functioning. Tbe tbemes around wbicb sucb adaptations occurred may include (a) a searcb for meaning in tbe experience, (b) an effort to regain a sense of mastery or control, and (c) an attempt to restore a positive sense of self. Residents of Kinsbasa, wbo place great importance in finding meaning in IDD and exbibit efforts to regain a sense of mastery (e.g., consulting pastors, doctors, bealers), may be displaying positive coping bebaviors. Indeed, it is possible tbat residents of Kinsbasa, often beralded for tbeir astonisbing resiliency in tbe face of social, economic, and political adversity (De Boeck, 2011; Trefon, 2011), are drawing on coping tecbniques (tbeir bifurcated understandings of meaning and causality of IDD) tbey acquired from encountering otber adversities. Building on coping and resilience researcb, a salient question in IDD seems to be: How migbt tbe permeating sense of metapbysical forces in Kinsbasa and tbe importance of causation for Kinois' understanding of all instances of misfortune confirm or complicate Western tbeories on family coping and resilience? In addition, concepts about meaning and causation of IDD are only one important piece of one's social identity. Indeed, "tbe consequences [of impairment] depend on tbe person's social background, individual cbaracteristics, and tbe severity of tbe condition as well as on tbe attitudes and possibilities presented by tbe local society" (Wbyte, 1995, p. 237). It seems justified for future researcb to determine bow otber factors, sucb as gender, socioeconomic status, existence of extended family in tbe city, or discourses of bealing (Deviscb, 1993;

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Janzen, 1992) contribute to the social identity of people with IDD in Kinshasa. Practice. This study reinforces the argument that "whereas the concern of Western societies is to improve on the lives of people with disabilities, in some African societies, such as the Songye of Zaire, the primary interest is in explaining why they are the way they are" (Devlieger, 1995, p. 95). Constructions of meaning shape the nature and effectiveness of supports and services and, in particular, the intended beneficiaries. In particular, support should move from being primarily focused on the individual to being focused on the entire family. That is so because these findings demonstrate that IDD in Kinshasa is often "made a relational problem between human beings" (Devlieger, 1995, p. 101). Indeed, one of the strengths of Kinois understanding of IDD is the recognition that it is not simply an abnormality of the individual, but also a disruption in the family. More attention should be paid to the "relational context in which the person with a disability exists, and greater efforts should be made to involve and support important others" (Devlieger, 1995, p. 104). The effect of family support and services, whether from professional providers or peer networks, on the meaning and understanding of causality seems justified. Not only must suppott providers must provide support to families rather than individuals, but they must also ensure that such family support involves an examination of key family relationships, problem solving with families, and interventions that work toward restoration of weak relationships. So, for example, in addition to simply providing physical therapy, medications, and special education services for a child with IDD, professionals should also seek to engage in counseling and social work with families, identify damaged relationships, and help the family to repair those relationships. Families cited information from physicians and other health care providers as important. Having understood the biomédical cause of the disability, some families reported they felt less tension and stress from trying to figure out the metaphysical source of the disability. Future informational support practices that provide families and communities the opportunity to learn about biomédical etiologies may, then, be an effective type of family support. It is important to note, however, that supporting families to recognize a solely biomédical cause is not realistic or relevant as a sole

intervention within Kinshasa society given the prevalence of beliefs grounded in the metaphysical. Rather, other interventions must be grounded in or integrate ideas of metaphysical meaning. Causality is a complex phenomenon in Kinshasa. Its nature, effect, and evocation of supports and services are equally complex, provoking new questions for research in Kinshasa and other non-Western contexts about causality and consequent attributions of social identity, and cautioning researchers to appreciate varieties of understandings and practitioners to take all of them into account in responding to families and individuals affected by IDD.

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du Congo, Villages Bondeko, Koli, Le Centre d'Evaluation et d'Intervention pour Enfants présentant le Handicap Mental et/ou l'Autisme, Bon Depart, Kikesa, and ail of the other organizations that graciously welcomed them as participant observers and for participant recruitment. Finally, the authors would like to acknowledge Glenn Adams, Shana Haines, John Janzen, Ed Meyen, Garth Myers, and Jean Ann Summers for their insight on previous drafts.

disability (pp. 153-175). Cambridge, UK: Cambridge University Press.

Received 1017/2013, accepted 1219/2013.

Authors: Heather M. Aldersey, McGill University; H. Rutherford Turnbxdl III, and Ann P. TurnbuU, University of Kansas.

The authors would like to gratefully acknowledge the important contributions of Delphine Assumani throughout the data collection process of this study. The authors wouM also like to express appreciation to l'Association des Centres pour Handicapés de l'Afrique Centrale, l'Association Nationale des Parents des Enfants Vivant Avec Handicap Mental en République Démocratique

Correspondence concerning this article should he addressed to Heather M. Aldersey, McGill University, Perry, E-3103 G, 6875 LaSalle Boulevard, Montreal, Quehec H4H 1R3, Canada (e-mail: [email protected]).

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