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Social integration of the physically disabled in Barbados
Sm. Sci. Med. Vol. 22, No. 4. pp. 459466, 1986 Printed in Great Britain. All rights reserved
SOCIAL
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Copyright 6.1 1986 Pergamon Press Ltd
INTEGRATION OF THE PHYSICALLY DISABLED IN BARBADOS ANN GOERDT 145 East 27th Street,
New York,
NY 10016, U.S.A
Abstract-An emergent concern with the rehabilitation and social integration of disabled people in developing nations has created a need to identify cultural beliefs and behaviors which may affect the integration of the disabled into normative social roles. The focus of this study is the social integration of physically disabled adults among the nonelite, colored population of Barbados, West Indies. This paper analyses the role participation of 30 physically disabled adults within the context of Barbadian beliefs and behaviors related to the disabled and to the ‘normal’ adult. Although village Barbadians do not expect the physically disabled to fulfill normative adult roles, some disabled individuals in this study do perform adult activities, such as maintaining employment and engaging in sexual relationships. However, very few of them participate in the reciprocal relationships among peers and neighbors through which village Barbadians achieve status and ‘respect’ as adults. Key wo&Aisabled,
normative
roles, social integration.
INTRODUCTION
the past decade developing countries have become increasingly concerned with the rehabilitation and social integration of their disabled citizens [I, 21. However, in contrast to the study presented here, the social integration of disabled people in developing nations has not been the focus of indepth research. The World Health Organization has sponsored surveys in developing countries which investigated the quality of life of disabled people. The results indicate that social segregation of disabled persons is widespread, often due to “deep-rooted fears and beliefs originating from age-old cultural and religious convictions . .” [3]. Survey research on attitudes toward disabled people in developed versus developing countries has also been done [4]. These surveys suggest that affluent societies have more positive attitudes toward the physically disabled than do poor nations. However, the data provided by these surveys do not yield information about the social processes involved in the integration or segregation of the disabled within their societies. Analyses of the social integration of physically disabled adults have been done in Western, industrialized nations. These studies indicate that disabled individuals do not routinely participate in normative roles, and are usually not perceived as ‘normal’ adults. Goffman [5] and Davis [6] claim that in the United States strained social interactions between able-bodied and disabled individuals limit the latter’s participation in normal societal relationships and thus in normal roles. Irving Zola, an American sociologist who has a physical disability, lived for IO months in a Dutch village built for the physically disabled. Zola [7] maintains that in the United States and in Holland physically disabled people are viewed as infants or children and are not granted the status of valid adults. He notes the difference pointed out by the disabled in the Dutch village between ‘valid’
During
459
Barbados
people and ‘invhlids’ or ‘idvalids’. Dartington et al. [8] analyzed the residents’ views of a home for severely physically disabled people in England, and state that the expectations of the able-bodied regarding the disabled can be universally defined by a ‘less-than-whole-person’ construct, which allows for an occasional heroic figure, such as Helen Keller. Safilios-Rothschild (91 examined societal responses to disability in Western, industrialized nations and concludes that the rehabilitation process in these countries fails to integrate disabled people into the larger society because of personal and social discriminatory practices which restrict their participation in the social roles of friend, lover, spouse and worker. These studies indicate that the availability of rehabilitation services and social programs do not insure the social integration of disabled adults in western societies. My research examines the social integration of physically disabled individuals among the nonelite. colored population in Barbados, a developing nation in the Eastern Caribbean. For this study, physical disability is defined as a visible deviation from the expected form or function of the body. During 16 months of field work in 1980~1981, I collected data through participant observation, indepth interviews, student compositions, and life histories from disabled adults [IO]. This paper analyses the role participation of physically disabled adults within the context of cultural beliefs related to disability and the normative roles of adult Barbadians. BELIEFS
RELATED
TO DISABILITIES
Cuuses qf’ disuhilitJ In village Barbados the occurrence of physical disabilities is attributed to both physical and supernatural causes. People name physical causes, such as diseases and accidents, which are frequently consistent with the causes identified by medical personnel, especially for acquired disabilities. Villagers often
460
AYN GOERLX
identify causes for congenital disabilities which describe an action or an omission in self-care on the part of the mother. Some of these. such as measles or lack of nutrition. are medically accepted explanations for congenital disabilities. Other actions of mothers which are thought to cause disabilities in infants include looking at strange creatures, such as circus figures or pitying a disabled person. Some say it is possible for a fdthcr to cause the birth of a disabled child, especially if hc has venereal disease. At times people provide a supernatural explanation for the presence of physical disability, while at other times they are at a loss to explain why a disability occurred to a particular individual or family. In the latter case, the conclusion is that things happen ‘for a purpose’. The supernatural cause accepted by many Barbadians is punishment for sin or wrongdoing, but some also believe that disability can be the consequence of harm done by another person through the use of obeah [I I] or witchcraft. Consistent with their Christian belief, Barbadians view ‘sin’ as a breach of religious law punishable by God. The belief that a disability is a punishment from God for the sins of an ancestor or of a disabled person is frequently cited by mcmbcrs of the middle class when they explain why they think people in the villages hide disabled family members. ‘Wrongdoing’ usually refers to a breach of the natural or moral law. and may be punishable by ‘nature’, or the natural course of events in the world. When people in the villages speak of punishment, they frequently refer to two types of ‘wrongdoing’: theft and cursing. These two acts, which seem to be most offensive to village Barbadians, also threaten the autonomy of the individual. Theft takes a person’s possessions and thus derives the individual of the symbols of personal achievement [l2]. To bc cursed is to bc subjected to another power, whether it be God. ‘nature’ or another person.
When village Barbadians are asked what caused a specific person’s disability, their answers are likely to focus on the physical cause. Similarly. when they are asked how a physical disability is treated. they are likely to refer to physical measures. i.e. medical treatment and home rcmcdies. It is possible that every disabled Barbadian has had some contact with the well-established medical system. Most frequently, contact occurs at the time of onset of the disability. and treatment may continue until the condition stabilizes. Home remedies may prcccdc. accompany, or succcd medical treatment. Physicians say that the USC of home remedies does not interfere with the medical course of treatment. The remedies commonly used include rubbing. ‘annointing’ or clapping with substances such as oil. alcohol. Bcngue’s Balsam. candle grease or sea w’atcr. The most common remedy used for a disability of the legs is to bury the affected limbs in the sand by the sea. Faith healing and obeah are other means by which some physically disabled people seek to cure or reduce their disabilities. Based on verbal reports and observations. these do not appear to bc methods commonly used. Most disabled people in this study claimed that they did not use either approach. Those
who did go to fdith healers usually indicated that It was something they thought was worth a try since other treatments had not helped them. No one admitted to me that he or she had personally tried obeah for his or her disability. However. other people occasionally suggested that the disabled or their family members seek treatment through obeah, especially if obeah is thought to have caused the disability. It is possible that people would not admit to me the use of obeah because it is associated with a lack of development or sophistication. Inquiries about obeah frequently bring a response that it no longer exists in Barbados, but in other. less developed islands, like St Lucia or Dominica. Other disahilitic~s
Barbadians arc concerned with physically disabled individuals’ ability, or inability. to ‘care for self’. but they do not consider the inability to use parts of the body to be the worst type of handicap that one could have. When they arc asked what disability they would least prefer to have themselves, most people name ‘madness’ or mental handicap. terms which are commonly used interchangeably. The major mason people give for their dread of ‘madness’ is that ‘mad’ people exhibit unpredictable, often dangerous behavior. Their major concern is that a ‘mad’ person will ‘go off’, ic. become violent without warning. In addition to the fear of violence from the mentally handicapped, there is a lack of expectation regarding their ability to function in society. People indicate that the mentally handicapped arc unaware of what is going on around them, unaware of their limitations, unable to work. and unable to function in any way because their brains do not function properly. When pressed to identify the worst physical handicap a person can have. most people name blindness. While the ability of blind people to get around independently is recognized, many village Barbadians perceive the blind as physically dependent. and more importantly, vulnerable to the harm of others. Harm may take the form of physrcal injury, especially poisoning or financial cheating. Because of the perceived vulnerability of blind people, others think that blindness is even more undesirable than conditions which impair one’s ability to walk or neccessitate one’s financial or physical dcpcndency. NORMATI\‘E
ROLES
IN BARBADOS
The cultural system of the lower class. nonelite Barbadians is based on the beliefs and behavsiors from English and West African cultures. Standards for respectable or proper behavior arc taken from the white culture. which emphasizes individual achicvement, while less formal behaviors derive from African customs and relate to egalitarianism. Sutton and Makiesky-Barrow [I31 note that status is sought through individual achievement in education. occupation and accumulation of wealth. Meanwhile. value is also placed on group solidarity, so that while individual autonomy is respected. equality and reciprocity among individuals within the community is to be maintained. Barrow [ 141 confirms these findings in her discussion of the concept of ‘respect’ by which
Social integration
of the physically
village Barbadians judge each other. In order to have ‘respect’ one must demonstrate an ability to achieve, a willingness to share, and also a willingness to accept assistance from others. The ‘normal’ adult also expects to participate in a prolonged sexual relationship and to biologically parent a child. Sutton [15] points out that it is particularly important for a woman to bear a child, which is a symbol of passage from girlhood to womanhood. Sutton and Makiesky-Barrow [ 131 point out that children are the expected outcome of each of three forms of conjugality or mating-visiting relationships, common-law marriage and legal marriage. A household unit may be composed of various members of one’s family, but it does not necessarily contain a nuclear family unit. Nonetheless, men and women share responsibility of child support, and both contribute to the household in which they reside. EXPECTATIONS REGARDING THE PHYSICALLY DISABLED
References made to individuals with a visible deviation from the expected form or function of the body reflect village Barbadians’ concern with both appearance and function. The greater the physical deviation from normal, the more likely it is to illicit judgemental comments about the social as well as physical limitations of a specific individual. Minor deviations, such as ‘parrot toes’ (toe-in) or ‘boney’ (thin body), are noted and may cause teasing, but they are not thought to limit a person’s ability to perform normal physical or social functions. Deviations which are more marked, but confined to one limb, may be noted with reference to appearance, to lack of a specific physical function, or to a generalized dysfunction. An absent or deformed limb illicits references such as ‘the one-foot man’. or the person with the ‘twisted foot’ or ‘tinny hand’. A person with a ‘twisted foot’, for example, might also be described as one who ‘can walk, but can’t jump’. Such an individual may also be referred to, especially by a stranger, as an ‘invalid’, a term usually defined as one who ‘can’t care for self’. The phrase ‘care for self’ does not refer to physical activities only, such as dressing or eating, but to activities which demonstrate an ability to care for oneself financially or socially. This is evident from the use of the term invalid with reference to individuals who can perform personal care activities, such as someone with one weak or deformed leg, but who are not expected to perform adult activities, such as working and contributing to the support of a household. Village Barbadians usually interpret deviations which involve more than one limb as an indication that the affected person will not assume normal adult roles. This is reflected in the description of a child with such a disability as one who ‘will come to nothing’, and in the occasional reference to such an adult as a ‘little boy’ or girl. Individuals who have deformity or dysfunction of the limbs, trunk or both may be referred to with descriptions of specific functional limitations, such as ‘the man who walks on his buttocks’. More frequently, references to such individuals describe a limitation that is both physical
disabled
in Barbados
461
and social, such as ‘invalid’, or one who ‘can’t care for self’, ‘can’t work’ or ‘can’t support a family’. Barbadians do not tend to praise or flatter one another, so the infrequent expression of admiration for a disabled person cannot be interpreted as a lack of recognition for achievements of the disabled. When an able-bodied person does speak with admiration of a disabled individual, it is with reference to the latter’s fulfillment of culturally defined roles, such as having children and working to support them. These are not activities which stimulate praise for the ‘normal’ adult, but they do for the disabled person. who is not expected to perform ‘normal’ activities. People’s comments about the disabled suggest that in village Barbados it would be unusual to find a disabled adult, particularly one with involvement of more than one limb, fulfilling culturally normative adult roles. My examination of the role participation of thirty disabled adults reveals that people with various types of physical disabilities do perform some of the activities expected of adults, but in most cases their activities are not acknowledged because they are not active in reciprocal relationships with peers and neighbors in their villages. ROLE PARTICIPATION OF PHYSICALLY DISABLED ADULTS
Thirty adults who have physical deformity or dysfunction provided life histories. The group consists of I6 males and I4 females between the ages of I8 and 54. Twelve individuals have congenital disabilities and eighteen acquired their disabilities after birth. The types of disabilities include amputation, complete paralysis, weakness and deformity of one or more limbs, the trunk or a combination of body parts. Table I provides the age, sex, type of disability and age at onset of the disability of the 30 people. Their life histories yield information about participation in the normal activities of obtaining an education, maintaining employment, contributing to the support of a household, engaging in sexual relationships, parenting children and participating in social interactions. See Table 2 for a summary of this information. These individuals do not represent a random selection of disabled adults, for contact was established through the Employment Exchange, the Welfare Department, and physical and occupational therapists [l6]. In some cases the professionals who arranged contacts chose disabled individuals who were thought to be functioning very well, so it is possible that these 30 individuals are participating in adult activities, especially employment, to a greater extent than a group of randomly selected disabled adults. School
Twenty-eight of the 30 adults in this study attended school. Six completed the schooling provided by the government before they acquired their disabilities. Eleven completed the schooling available to them after they acquired a disability. Eight of these individuals have disabilities which were present at birth or before school age. Eleven others attended school, but did not complete it. The reasons for leaving school
462
ANN GOERVT Table I. Thirty Age
Sex
54 51 50 4X 45 43 3x 36 35 7s 32 30 30 2Y 29 29 2x 27 25 25 24 24 23 23 23 23 22 22
M M M M F F M M M M F F F F F M F M F F M F M M M F F M M F
N’s
IX
physically disabled adults
Type of phywal
disability Deformity of one leg Parapkqa (poho) Paraplegia (poho) Above-elbow amputation Clubfeet. bowlegged. mldget Clubfeet. short legs Paraplegia (polio or birth’?) Hemlplegia Gait deviation (poho) P~i~~lpl~gl~ Deformity of me leg Muscular dystrophy Weaknw of one arm Deformity of one hand Joint degeneration of hip. skin disease Clubfoot Weakness of legs, back Gait deviation (meningitis’?) Weak, incoordinated muscles Hemiplegla (menmgiti\“) Below-knee amputation Humpback, shortened stature C&n Paralyzed arm Paraplegta Paraplegia Weakness of legs. hands (polio) Gall dewation Weakness of legs Incoordinated muscles
Table 2. Role participation
Age at onset Birth I3 years 2 years I6 years Birth Birth Birth (?) 24 years IO month\ I7 year\ Birth IO years 4 year\ Birth 23 years Birth Birth 6 years 12 years 3 years 14 year\ Birth Blrrh I6 years Birth IX years 6 months Birth I I year\ I? years
of 30 disabled adults Male (16)
Female (14)
Total
Schooling Completed before onset Completed after onset Attended, did not complete Never attended
4 5 5 2
2 6 6 0
6 II II 2
Employment Self-employed Employed Unemployed
4 7 5
0 5 9
4 I2 14
II 2 3
5 4 5
I6 6 8
9 7
5 Y
I4 I6
I 2 I4
I 4 9
2 6 23
2
2
4
2
I
3
6
2
x
6
6
12
0
3
3
Social roles and activities
Contribution to household Primarily financial Primarily work No contribution Sexual relalionshlps Participate Do not partupate Parenting Children before onset Children after onset No children Soaal interactions Frequent with many people, including peers Some Interactions at work: few close friends in peer group Some interactlons at work or in village; occasional get-togethers with peers Limited mteractmns at work, m village, or in district: friendshIps with older people Interactions only with people who come to the home
include: academic difficulties; physical problems getting to and from school; and the need to tend to household responsibilities, such as caring for elderly parents. In five cases the mother of a disabled adult stated that she withdrew her child from school because he or she had ‘difficulty with learning’. In four
of ihese cases the‘etiology of the disability was not certain, but brain damage appeared to be present. The two men who have had no education do not know why they were not sent to school. Both have been unable to walk since early childhood, but that may not be the explanation for their lack of edu-
Social integration of the physically disabled in Barbados cation since others who could not walk were sent to school. Based on the individuals in this group, it appears that a physical disability is not interpreted by family members. especially mothers. to mean that a child should not be educated. Several disabled adults report that it was their mother who insisted that they go to school, and it was the mothers who sent their children to school until it became too difficult academically or physically. Despite the belief within the society that disabled individuals are not likely to fulfill adult roles, many mothers of physically disabled children try to provide their children with an which is basic preparation for pareducation, ticipating in some adult roles. Employment Sixteeen individuals in this group of disabled adults have some type of employment. Although the 47% unemployment rate for these thirty people is much higher than the 1980 general unemployment rate in Barbados of 12.6% [17], the rate for all disabled adults would probably be higher because of the manner in which these 30 people were selected. Five people are engaged in work that has been traditional in village Barbados: gardening, selling fish, sewing and furniture repair. Only Mr King, a tailor, works full-time. He and two others in traditional work are self-employed. None of these five people can support themselves, so each receives assistance from the Welfare Department. Eleven people are engaged in more modern types of work: hospital technician, bookkeeper, clerk, janitor, factory worker and vendor on the beach. The nine who have full-time employment are able to contribute to the support of their households. Only Miss Harris, who is the sole supporter for her son and herself, requires assistance from welfare. Two women work part-time and are not able to make significant financial contributions to their households. Each has tried to find more or different work. Most of the I4 unemployed individuals have one or more of the following characteristics: a severe physical dysfunction, an intellectual impairment, or a mother who believes that her disabled offspring is not capable of working. The mothers who did not encourage, or actually prevented, their disabled children from seeking work are those who noted that their children had ‘difficulty with learning’, or who kept their disabled daughters at home to protect them from people’s reactions, such as staring or teasing. A few mothers believe that a disabled woman would be sexually abused by men, while others simply feel that no one will hire their daughters, who should not be subjected to the certain rejection. Nine of the disabled who did not attend or complete school are among this group of unemployed, but it is not certain that lack of education prevents their employment. The severity of the disability or the intellectual impairment which made schooling difficult may also impede employment. Household Contributions to the support of a Barbadian household may normally take the form of money or work. As noted above, 9 of 30 disabled individuals
463
make significant financial contributions to the SUPport of their households, i.e. their contributions are similar to that of an able-bodied person with thetr job. The others who are employed use their income for personal needs and make only meager contributions to the rest of the household, but this does relieve others from fully supporting the disabled person. Six of the I4 unemployed people contribute significantly to the work required within their households. Two disabled women are primarily responsible for the care of a child, while one of the disabled men cares for his nieces while his sister works, and also cooks and does laundry for the household. Two other women and one other man perform specific household tasks. The eight unemployed individuals who do not make regular or significant contributions to their households include five who have severe physical disabilities or intellectual impairment. The three remaining individuals, who have weaknesses in one or more extremities, but who appear to be able to do some physical tasks, are perceived by their mothers as unable to assume routine responsibilities. Two of these three women express an interest in seeking employment, but are discouraged by their mothers. Sexual relationships Barbadians view marriage as the ideal form of conjugal relationships, but at the time of the 1970 census less than half of all adults were married [l8]. Nonetheless, all adults are expected to participate in stable sexual relationships. Roughly half of the disabled people in this study claim to have participated in at least one sexual relationship after the onset of their disability. Mr Griffiths was married and is divorced; Miss Quintyne has lived with a man intermittently for 17 years; and 12 people have either lived with a sexual partner for a short time, or had a visiting relationship, often of a short duration. Mr King states that women are willing to come and live in his house, but they do not want to be known as his girlfriend or wife. Mr Trotman says that he tried to live with his wife after his injury, but she left him. He believes that her departure was due to problems they had prior to his disability, not to his hemiplegia. A couple of men brag of their many relationships with women, but Mr Simmons is discredited by the women of his village who say that his stories are his fantasies. Several young men state that their experience with women is very limited, but they hope to find someone for a long-term relationship. The four disabled women who have had short-term sexual relationships have each had at least one child. Sixteen individuals either denied participation in a sexual relationship or did not discuss the issue. This group includes most of those with severe physical deformities, intellecutal impairments or mothers who encourage them to stay home. On the other hand, within this group six have completed their education, three work full-time, and three work part-time. Miss Harris, who has paraplegia, and Miss Mayers, who has joint and skin disease, acquired their disabilities after age twenty. Neither expects to have a sexual relationship as a disabled person. Miss Mayers explained that the only feelings a man would have toward a disabled woman would be brotherly or
464
ANN GOERDT
fatherly. Only one man who has not had a sexual relationship indicated that he would like to have one. but hc must first cam more money. He has been cmploycd for 5 years.
MOSI Barbadian adults have parented at least one child. As noted above. this is particularly important for vvomcn. but men are also very proud to have a child. Two of the men and four w’omen discussed in this paper became a biological parent to at least one child after the onset of their disabilities. Mr Griffiths. who is divorced. has two adult children. Mr Trotman, who had a common-law wife and children before his injury. had one more child after he acquired hemiplcgia and bcforc his wife left him. The four mothers in this group each had at least one visiting relationship. The youngest. Miss Alleync. is kept in the house by her own mother. who states that her daughter became pregnant after sneaking out to see a young man in the village. The mother (grandmother) now watches her disabled daughter more carefully so there will be no further mishaps. The three other women, who have one, two and three children respectively. are employed and contribute to the support of their children. Because it is particularly important to the adult status of a woman to have a child, it is not surprising that 4 of the 5 women who have had sexual relationships havse had children. Miss Quintyne did not because she is physically unable to bear a child. Meanwhile. 9 men claim to participate in sexual relationships. but only two say they have children. Some men may falsely claim engagement in sexual relationships because that is important to their status. Alternatively, men may not admit to parenthood, cithcr bccausc they arc unaware that they have fathered a child. or because they cannot afford the minimal weekly contributions to child support for which they would bc legally obliged.
While people in the middle class, including medical and social work personnel. indicate that the disabled are hidden. people in the village seldom affirm this. It is apparently rare for a family to hide a disabled member from the community. One reason for this may simply be the difficulty in hiding a person in a small house situated in close proximity to other houses. However. the large proportion of individuals in this study who have attended school, been engaged in work activities or participated in sexual relationships suggests that most families do not attempt to hide a disabled member from the view of the community. At the same time. the various degrees of social interaction experienced by the disabled in this study indicates that most physically disabled individuals are ‘hidden’ from the full range of adult activities in the community. Only four people. 2 men and 2 women, describe interactions and relationships which are typical of village Barbados. that is. they interact with people of all ages and havje close friends of their own sex and age group. Mr King. who has paraplegia from polio, conducts his tailoring business from his home, which
he rarely leaves. Nonetheless, his interactions with others are frequent and varied. The door to his sewing room is always open, and people passing by greet him or stop to chat. In the late afternoon his shop is a place where men gather to joke and gossip, Miss Quintyne, a midget with club feet and bowed legs, used to sell fruit in Bridgetown. Now. because of her obesity and high blood pressure, she remains in her village, where she maintains a wide social network. The two other individuals travel outside their villages to go to work, so their contacts arc more broadly based. Three individuals have some interactions at work. but describe their friendships as confined to a few people in their peer group. Each of the two men has a few male friends and a girlfriend. One of them. Mr Griffiths, was previously married. Miss Mayers has only female friends. Mr Griffiths is able to move about easily, but the two others require crutches. Six men and 2 women describe limited to active interactions with people at work or in their villages. and occasional get-togethers with peers of their own sex. Three of the men also have girlfriends. These 8 people have disabilities which include paraplegia. hemiplegia, weakness of two extremities and paralysis of one extremity. Five men and I woman are employed. Twelve individuals, 6 men and 6 women, have limited interactions with people at work, in their villages, or in the districts around their villages. They do not have peer group friends. but some describe friendships with older people. Mr Simmons claims to have girlfriends, but is discredited by the women in his village. Two of the women have had conjugal relationships. One is Miss Alleyne, who is now confined to her house. The other woman has three children from two men with whom she is no longer in contact. The disabilities present in this group range from a deformity of one limb to paraplegia. This group also contains all but one of the individuals who appear to have intellectual impairment. Three of the 12 people are employed part-time: one is employed full-time. Three women who are confined to their homes because they cannot walk outdoors arc extremely limited in their social contacts. Most social interactions in the village take place outside the home, so these women interact only with people who stop at the window to chat, or who stop in to borrow or loan an item. Those who do visit the houses of these women are usually friends of another member of the household. The variety of physical disabilities found within the groups described above indicates that the type of disability does not always determine the degree of social interaction experienced by disabled individuals. For example, within each level of social interaction described there is at least one person who is unable to walk due to paraplegia and one who is able to walk without an assistive device. Based on the people in this study. individuals with all types of disability participate less in the informal network of social interactions and relationships in the village than in other adult activities. such as maintaining employment or engaging in sexual relationships. Because they arc ‘hidden’ from this
Social integration of the physically disabled in Barbados important adult activity, the disabled do not receive recognition as adults from peers and neighbors.
CONCLUSION
Barbadians do not expect physically disabled individuals to fulfill normative adult roles. Their lack of expectations can be explained partly by their beliefs and concepts related to disability, and partly by their empirical observations of the behaviors of physically disabled people Beliefs related to the cause and treatment of disabilities do not appear to have a marked impact on disabled adults’ participation in normative roles. Today the causes or treatments ascribed to a disability are frequently physical ones. In the past, when people were not influenced by scientific ideas regarding causes and treatments for disease and disability, beliefs about the supernatural may have had a greater influence on their perceptions of the disabled. Now when a supernatural cause is named for the disability of a specific person it is often used to confirm an opinion about the person or family held prior to the onset of the disability. For example, if a person thought to be evil becomes disabled. the disability is viewed as a punishment which the person is thought to deserve. If a person respected by the community becomes disabled, or has a disabled child, the event is said to have happened ‘for a purpose’. The manner in which village Barbadians hypothetically rank disabilities or handicaps reflects cultural values concerning personal autonomy. While people perceive ‘madness’ and blindness as disabilities which render an individual more dangerous or vulnerable than disabilities of the body, they use the term invalid, which implies lack of autonomy, for the physically disabled. People may focus on the functional limitations of the physically disabled because their deviations from normal are so easily observed. Barbadians’ keen interest in each other’s appearance also makes them alert to an abnormality in the form or function of a specific body part, which is interpreted as a generalized abnormality or inability to function as a ‘normal’ person. Lack of expectations regarding the disabled may also be based on empirical observations of their inability to perform certain types of tasks. Individuals without the function of one or more limbs cannot physically perform many types of work and thus have a distinctly limited opportunity to accumulate wealth, to contribute financially to a household, or to share resources with peers and friends within the community. Traditionally, village Barbadians worked on sugar plantations, so many physically disabled individuals were obviously not able to work as effectively as others. Today most jobs in Barbados are located outside the villages in the service sector, particularly in tourism and the civil service. Often disabled people do not have access to these jobs because they are unable to walk for long distances or to climb the steps of the public buses. Braces, artificial limbs and wheelchairs are not readily available, and when they are, they may not solve the problem of transportation. Hence physically disabled individuals are still observed to be unable to work.
465
Mothers, like other members of Barbadian society, internalize societal beliefs and base many of their expectations and behaviors on them. However, mothers of disabled children may also recognize more potential in their children, and have greater expectations for them than the larger society. The motherxhild relationship is frequently noted in the literature on the Caribbean family [I91 as the bond which is stronger than the mother-father or father-child bond. Within the group of disabled people in this study the mother’s influence is frequently manifested in the activities of the disabled person. It was the mothers who sent the disabled children to school, and if a child did well, it was the mother who encouraged that child, especially a disabled son, to seek further training or employment. If a disabled child did not do well in school it was the mother who trained him or her to perform household tasks. When a daughter is disabled her mother may be protective and discourage activity outside the household fearing that others, especially men, will take advantage, especially of a woman, who is thought to be an ‘invalid’ or unable to ‘care for self’. Studies in the United States have addressed the issue of distinguishing the effects of societal vs personal reactions to disabled people [5,20,21]. Because of the methodological problems in making that distinction, my study did not intend to identify specific reactions of disabled Barbadians to societal beliefs or labeling vs their reactions to personal relationships or the physical limitations imposed by their disabilities. Nonetheless, it is evident that societal expectations, reflected in the label invalid, do affect the behavior of disabled as well as nondisabled people. Some disabled individuals admit that they avoid interactions outside the family and a small circle of friends because they know disabled people are considered ‘invalids’ and thus will be rejected in work or social settings. At the same time, many able-bodied employers are unwilling to hire a disabled person even though the disability does not interfere with the required task. Similarly, most able-bodied individuals appear unwilling to parent a child with a disabled person because the latter is thought to be unable to assume the responsibilities of raising a child even if the person is working or able to care for a child. The general lack of expectations regarding the role participation of the physically disabled may be based on objective evidence that they cannot perform some tasks as well as able-bodied people. But there is also evidence that disabled individuals do perform ‘normal’ activities. Almost all of the people in this study attended school; one-half of them have some type of employment; two-thirds of them make a contribution to their household; and half of them have had at least one sexual relationship. The minimal impact of the second type of evidence may result from the lack of participation of most disabled adults in the reciprocal relationships among peers and other members of the community. Their absence from these relationships eliminates them from the social process whereby village Barbadians establish their status and develop ‘respect’ within the community. Limited expectations regarding the physically disabled, and disabled people’s limited participation in normative social roles, exist in Barbados and in the
Western, industrialized nations referred to in my introduction. The disabled in developed countries may be involved in adult activities to a greater extent than their Barbadian counterparts because the former may be provided through government policies with adaptive equipment. education, vocational training. job opportunities and physical access to public buildings and facilities. On the other hand. some of the disabled in industrialized nations may be more segregated from their families and communities than disabled Barbadians because more of the former live in residential facilities provided exclusively for the disabled. In developed countries social policies and rehabilitation programs reduce the physical constraints imposed by disabilities. but cultural perceptions of the disabled continue to limit their participation in normative adult roles. In Barbados the disabled have few or no resources to reduce the physical limitations of their disabilities. In addition, they are not expected to fulfill normative adult roles, and if they do so despite the disability and limited expectations, their status as adults is still not guaranteed. The disabled’s lack of social integration in Barbados and in developed nations demonstrates that cultural perceptions related to the disabled can limit their participation in normative roles. These findings suggest that developing nations presently concerned with the social integration of their disabled citizens must address perceptions of the disabled as well as the physical impediments imposed by disabilities Hence, further indepth studies within the cultural context of developing countries are required to identify beliefs, values and behaviors which may affect the disabled’s participation in normative social roles. REFERENCES
I. At the Twenty-ninth World Health Assembly of the World Health Organization the Committee on Disability Prevention and Rehabilitation urged the incorporation of the disabled into primary health care programs in developing countries. In its recommendations the committee noted that programs must be appropriate and acceptable to the countries in which they would be implemented. Twenr.y-ninrh World Health Assemhi~. Part 1. Official Records of WHO, No. 233, p. 44. WHO. Geneva, 1976. 2. Since 1976. the World Health Organization has developed a program to promote the integration of the disabled into health care programs and also into their communities. Helander E., Mendis P. and Nelson G. Training Di.vahled People in the Community; A Manual on Communii~~-Based Rehahilitalion /i/r DwelopinR Countries. WHO, Geneva, 1983. 3. Disability prevention and rehabilitation. Report of the WHO Expert Committee on Disability Prevention and Rehabilitation. Technical Report Series 668. p. 1 I. WHO, Geneva. 1981. 4. Jordon J. E. Attitudes To~t~ard Education and Phy.vicull~ Disabled Persons in Eleven Nations. Michigan State University. East Lansing, Mich.. 1968. 5. Goffman E. Stigma: Notes on the Management q/ Spoiled Idenfiry. Prentice-Hall, Englewood Cliffs, N.J.. 1963.
6. Davis F. Deviance disavowal: the management of strained interaction by the visibly handicapped. In The O//w Sir/c (Edited by Becker II. S.). pp. I I9 137. The Free Press. New York. 1964. 7. Zola I. K. .Mi.wiq Picw~.c: .A ~‘hroukk o/ Lirkg with (I Di~whr/i/~~.Temple University Press. Philadelphia. 1982. T.. Miller E. and Gwynnc G. .A Li/i, x. Dartington To,q,rhc~: I/X, Divtrrhu/io~~ of .-1ctitudc~s .4 rouml t/w Di.whlcd. Tavistock Publications. London. 19X I. C. T/w .Soc~ro/q~~ turd So&/ P.sj,9. Sahlios-Rothschild l~holo~,,~ of Di.vuhdi/~~~ (md Rchahilicutiotr. Random House, New York. 1970. research funded by IO. This paper is based on dissertation an Organization of American States Fellowship. a Fullbright Grant for graduate study. and a NIMH National Research Service Award. Fellowship No. I F31MH0831501. Physical disability in Barbados: a cultural perspective. University Microfilms International, Ann Arbor. Mich., 1984. Il. Fisher notes the Barbadian use of obeah. or witchcraft. to cause madness and to affect courtships and personal disputes. Fisher L. E. The imagery of madness in village Barbados. Ph.D. dissertation, Univjersity Microfilms International, Ann Arbor, Mich.. 1973. 12. Reference to the significance of stealing is made m a Barbadian novel: “But stealin’ is destructive complete ‘cause it confuse the whole meaning o’ property. an’ property IS the only real thing, ‘cause the worth of a man, as you know, is the size o’ his belongings”. Lamming G. O/’ Age uttd I~tnoc~r~zc~e. p. 79. Allison & Busby, London. 198 I. S. Social inequality 13. Sutton C. R. and Makiesky-Barrow and sexual status in Barbados. In .Se.wa/ Strar$cution: A Cro.w-Cultural Vicw~ (Edited by Schlegel A.), pp. 292 325. Columbia University Press. New York. 1977. and ranking in a Barbadian 14. Barrow C. Reputation community. Sot,. C.on. Stud. 25, 106-121. 1976. 15. Sutton C. R. The scene of the action: a wildcat strike in Barbados. Ph.D. dissertation, Anthropology Dcpartment. Columbia University, 1969. 16. In 1980 198 I there were 1249 physically handicapped people on the list of welf;lre recipients. Fifteen of these people provided life histories. Between 1976 and 1980 twenty-six physically handicapped individuals obtained employment through the Employment Exchange. Seven of these people provided life histories. Eight other disabled people in my study lived in the area where I resided or were contacted through physical or occupational therapists. I7 Barhadav Ecowmic~ Report /9X0. p. 19. Mimstry of Finance and Planning, Barbados, 1981. 18 Population Cet~.su.v of Ihe Commonw~calth Curibtwa~~. 1970. Marital Status, Vol. 8. The Herald Ltd. Kingston, Jamaica, 1976. Total number of males between 15 and 64 who had never married was 32,934. Total number of males in that age group was 55.283 (p. 139). Total number of females between I5 and 64 who had never married was 36.009. Total number of females in that age group was 63,682 (p. 142). list of references regarding I9 For a thorough - family orgamzation and the role of the woman in the Caribbean familv set Nevadomskv J. Exolainina Caribbean family and household organiiation:’ a typology of the classics. J. Curih. S/ud. 4, 38 46. 1984. 20 Scott R. A. T/IP Making of Blind Men. Russell Sage Foundation. New York. 1969. 21 Gove W. R. Societal reaction theory and disabilitv. In The Sociolo~>~ of’ P/t~.vic~nlDi,suhili/~~ und Rehahilir;rion (Edited by Albrecht G. L.) pp. 57-71. University of Pittsburgh Press. Pittsburgh. 1976.
SOCIAL
0277-9536186 $3.00 + 0.00
Copyright 6.1 1986 Pergamon Press Ltd
INTEGRATION OF THE PHYSICALLY DISABLED IN BARBADOS ANN GOERDT 145 East 27th Street,
New York,
NY 10016, U.S.A
Abstract-An emergent concern with the rehabilitation and social integration of disabled people in developing nations has created a need to identify cultural beliefs and behaviors which may affect the integration of the disabled into normative social roles. The focus of this study is the social integration of physically disabled adults among the nonelite, colored population of Barbados, West Indies. This paper analyses the role participation of 30 physically disabled adults within the context of Barbadian beliefs and behaviors related to the disabled and to the ‘normal’ adult. Although village Barbadians do not expect the physically disabled to fulfill normative adult roles, some disabled individuals in this study do perform adult activities, such as maintaining employment and engaging in sexual relationships. However, very few of them participate in the reciprocal relationships among peers and neighbors through which village Barbadians achieve status and ‘respect’ as adults. Key wo&Aisabled,
normative
roles, social integration.
INTRODUCTION
the past decade developing countries have become increasingly concerned with the rehabilitation and social integration of their disabled citizens [I, 21. However, in contrast to the study presented here, the social integration of disabled people in developing nations has not been the focus of indepth research. The World Health Organization has sponsored surveys in developing countries which investigated the quality of life of disabled people. The results indicate that social segregation of disabled persons is widespread, often due to “deep-rooted fears and beliefs originating from age-old cultural and religious convictions . .” [3]. Survey research on attitudes toward disabled people in developed versus developing countries has also been done [4]. These surveys suggest that affluent societies have more positive attitudes toward the physically disabled than do poor nations. However, the data provided by these surveys do not yield information about the social processes involved in the integration or segregation of the disabled within their societies. Analyses of the social integration of physically disabled adults have been done in Western, industrialized nations. These studies indicate that disabled individuals do not routinely participate in normative roles, and are usually not perceived as ‘normal’ adults. Goffman [5] and Davis [6] claim that in the United States strained social interactions between able-bodied and disabled individuals limit the latter’s participation in normal societal relationships and thus in normal roles. Irving Zola, an American sociologist who has a physical disability, lived for IO months in a Dutch village built for the physically disabled. Zola [7] maintains that in the United States and in Holland physically disabled people are viewed as infants or children and are not granted the status of valid adults. He notes the difference pointed out by the disabled in the Dutch village between ‘valid’
During
459
Barbados
people and ‘invhlids’ or ‘idvalids’. Dartington et al. [8] analyzed the residents’ views of a home for severely physically disabled people in England, and state that the expectations of the able-bodied regarding the disabled can be universally defined by a ‘less-than-whole-person’ construct, which allows for an occasional heroic figure, such as Helen Keller. Safilios-Rothschild (91 examined societal responses to disability in Western, industrialized nations and concludes that the rehabilitation process in these countries fails to integrate disabled people into the larger society because of personal and social discriminatory practices which restrict their participation in the social roles of friend, lover, spouse and worker. These studies indicate that the availability of rehabilitation services and social programs do not insure the social integration of disabled adults in western societies. My research examines the social integration of physically disabled individuals among the nonelite. colored population in Barbados, a developing nation in the Eastern Caribbean. For this study, physical disability is defined as a visible deviation from the expected form or function of the body. During 16 months of field work in 1980~1981, I collected data through participant observation, indepth interviews, student compositions, and life histories from disabled adults [IO]. This paper analyses the role participation of physically disabled adults within the context of cultural beliefs related to disability and the normative roles of adult Barbadians. BELIEFS
RELATED
TO DISABILITIES
Cuuses qf’ disuhilitJ In village Barbados the occurrence of physical disabilities is attributed to both physical and supernatural causes. People name physical causes, such as diseases and accidents, which are frequently consistent with the causes identified by medical personnel, especially for acquired disabilities. Villagers often
460
AYN GOERLX
identify causes for congenital disabilities which describe an action or an omission in self-care on the part of the mother. Some of these. such as measles or lack of nutrition. are medically accepted explanations for congenital disabilities. Other actions of mothers which are thought to cause disabilities in infants include looking at strange creatures, such as circus figures or pitying a disabled person. Some say it is possible for a fdthcr to cause the birth of a disabled child, especially if hc has venereal disease. At times people provide a supernatural explanation for the presence of physical disability, while at other times they are at a loss to explain why a disability occurred to a particular individual or family. In the latter case, the conclusion is that things happen ‘for a purpose’. The supernatural cause accepted by many Barbadians is punishment for sin or wrongdoing, but some also believe that disability can be the consequence of harm done by another person through the use of obeah [I I] or witchcraft. Consistent with their Christian belief, Barbadians view ‘sin’ as a breach of religious law punishable by God. The belief that a disability is a punishment from God for the sins of an ancestor or of a disabled person is frequently cited by mcmbcrs of the middle class when they explain why they think people in the villages hide disabled family members. ‘Wrongdoing’ usually refers to a breach of the natural or moral law. and may be punishable by ‘nature’, or the natural course of events in the world. When people in the villages speak of punishment, they frequently refer to two types of ‘wrongdoing’: theft and cursing. These two acts, which seem to be most offensive to village Barbadians, also threaten the autonomy of the individual. Theft takes a person’s possessions and thus derives the individual of the symbols of personal achievement [l2]. To bc cursed is to bc subjected to another power, whether it be God. ‘nature’ or another person.
When village Barbadians are asked what caused a specific person’s disability, their answers are likely to focus on the physical cause. Similarly. when they are asked how a physical disability is treated. they are likely to refer to physical measures. i.e. medical treatment and home rcmcdies. It is possible that every disabled Barbadian has had some contact with the well-established medical system. Most frequently, contact occurs at the time of onset of the disability. and treatment may continue until the condition stabilizes. Home remedies may prcccdc. accompany, or succcd medical treatment. Physicians say that the USC of home remedies does not interfere with the medical course of treatment. The remedies commonly used include rubbing. ‘annointing’ or clapping with substances such as oil. alcohol. Bcngue’s Balsam. candle grease or sea w’atcr. The most common remedy used for a disability of the legs is to bury the affected limbs in the sand by the sea. Faith healing and obeah are other means by which some physically disabled people seek to cure or reduce their disabilities. Based on verbal reports and observations. these do not appear to bc methods commonly used. Most disabled people in this study claimed that they did not use either approach. Those
who did go to fdith healers usually indicated that It was something they thought was worth a try since other treatments had not helped them. No one admitted to me that he or she had personally tried obeah for his or her disability. However. other people occasionally suggested that the disabled or their family members seek treatment through obeah, especially if obeah is thought to have caused the disability. It is possible that people would not admit to me the use of obeah because it is associated with a lack of development or sophistication. Inquiries about obeah frequently bring a response that it no longer exists in Barbados, but in other. less developed islands, like St Lucia or Dominica. Other disahilitic~s
Barbadians arc concerned with physically disabled individuals’ ability, or inability. to ‘care for self’. but they do not consider the inability to use parts of the body to be the worst type of handicap that one could have. When they arc asked what disability they would least prefer to have themselves, most people name ‘madness’ or mental handicap. terms which are commonly used interchangeably. The major mason people give for their dread of ‘madness’ is that ‘mad’ people exhibit unpredictable, often dangerous behavior. Their major concern is that a ‘mad’ person will ‘go off’, ic. become violent without warning. In addition to the fear of violence from the mentally handicapped, there is a lack of expectation regarding their ability to function in society. People indicate that the mentally handicapped arc unaware of what is going on around them, unaware of their limitations, unable to work. and unable to function in any way because their brains do not function properly. When pressed to identify the worst physical handicap a person can have. most people name blindness. While the ability of blind people to get around independently is recognized, many village Barbadians perceive the blind as physically dependent. and more importantly, vulnerable to the harm of others. Harm may take the form of physrcal injury, especially poisoning or financial cheating. Because of the perceived vulnerability of blind people, others think that blindness is even more undesirable than conditions which impair one’s ability to walk or neccessitate one’s financial or physical dcpcndency. NORMATI\‘E
ROLES
IN BARBADOS
The cultural system of the lower class. nonelite Barbadians is based on the beliefs and behavsiors from English and West African cultures. Standards for respectable or proper behavior arc taken from the white culture. which emphasizes individual achicvement, while less formal behaviors derive from African customs and relate to egalitarianism. Sutton and Makiesky-Barrow [I31 note that status is sought through individual achievement in education. occupation and accumulation of wealth. Meanwhile. value is also placed on group solidarity, so that while individual autonomy is respected. equality and reciprocity among individuals within the community is to be maintained. Barrow [ 141 confirms these findings in her discussion of the concept of ‘respect’ by which
Social integration
of the physically
village Barbadians judge each other. In order to have ‘respect’ one must demonstrate an ability to achieve, a willingness to share, and also a willingness to accept assistance from others. The ‘normal’ adult also expects to participate in a prolonged sexual relationship and to biologically parent a child. Sutton [15] points out that it is particularly important for a woman to bear a child, which is a symbol of passage from girlhood to womanhood. Sutton and Makiesky-Barrow [ 131 point out that children are the expected outcome of each of three forms of conjugality or mating-visiting relationships, common-law marriage and legal marriage. A household unit may be composed of various members of one’s family, but it does not necessarily contain a nuclear family unit. Nonetheless, men and women share responsibility of child support, and both contribute to the household in which they reside. EXPECTATIONS REGARDING THE PHYSICALLY DISABLED
References made to individuals with a visible deviation from the expected form or function of the body reflect village Barbadians’ concern with both appearance and function. The greater the physical deviation from normal, the more likely it is to illicit judgemental comments about the social as well as physical limitations of a specific individual. Minor deviations, such as ‘parrot toes’ (toe-in) or ‘boney’ (thin body), are noted and may cause teasing, but they are not thought to limit a person’s ability to perform normal physical or social functions. Deviations which are more marked, but confined to one limb, may be noted with reference to appearance, to lack of a specific physical function, or to a generalized dysfunction. An absent or deformed limb illicits references such as ‘the one-foot man’. or the person with the ‘twisted foot’ or ‘tinny hand’. A person with a ‘twisted foot’, for example, might also be described as one who ‘can walk, but can’t jump’. Such an individual may also be referred to, especially by a stranger, as an ‘invalid’, a term usually defined as one who ‘can’t care for self’. The phrase ‘care for self’ does not refer to physical activities only, such as dressing or eating, but to activities which demonstrate an ability to care for oneself financially or socially. This is evident from the use of the term invalid with reference to individuals who can perform personal care activities, such as someone with one weak or deformed leg, but who are not expected to perform adult activities, such as working and contributing to the support of a household. Village Barbadians usually interpret deviations which involve more than one limb as an indication that the affected person will not assume normal adult roles. This is reflected in the description of a child with such a disability as one who ‘will come to nothing’, and in the occasional reference to such an adult as a ‘little boy’ or girl. Individuals who have deformity or dysfunction of the limbs, trunk or both may be referred to with descriptions of specific functional limitations, such as ‘the man who walks on his buttocks’. More frequently, references to such individuals describe a limitation that is both physical
disabled
in Barbados
461
and social, such as ‘invalid’, or one who ‘can’t care for self’, ‘can’t work’ or ‘can’t support a family’. Barbadians do not tend to praise or flatter one another, so the infrequent expression of admiration for a disabled person cannot be interpreted as a lack of recognition for achievements of the disabled. When an able-bodied person does speak with admiration of a disabled individual, it is with reference to the latter’s fulfillment of culturally defined roles, such as having children and working to support them. These are not activities which stimulate praise for the ‘normal’ adult, but they do for the disabled person. who is not expected to perform ‘normal’ activities. People’s comments about the disabled suggest that in village Barbados it would be unusual to find a disabled adult, particularly one with involvement of more than one limb, fulfilling culturally normative adult roles. My examination of the role participation of thirty disabled adults reveals that people with various types of physical disabilities do perform some of the activities expected of adults, but in most cases their activities are not acknowledged because they are not active in reciprocal relationships with peers and neighbors in their villages. ROLE PARTICIPATION OF PHYSICALLY DISABLED ADULTS
Thirty adults who have physical deformity or dysfunction provided life histories. The group consists of I6 males and I4 females between the ages of I8 and 54. Twelve individuals have congenital disabilities and eighteen acquired their disabilities after birth. The types of disabilities include amputation, complete paralysis, weakness and deformity of one or more limbs, the trunk or a combination of body parts. Table I provides the age, sex, type of disability and age at onset of the disability of the 30 people. Their life histories yield information about participation in the normal activities of obtaining an education, maintaining employment, contributing to the support of a household, engaging in sexual relationships, parenting children and participating in social interactions. See Table 2 for a summary of this information. These individuals do not represent a random selection of disabled adults, for contact was established through the Employment Exchange, the Welfare Department, and physical and occupational therapists [l6]. In some cases the professionals who arranged contacts chose disabled individuals who were thought to be functioning very well, so it is possible that these 30 individuals are participating in adult activities, especially employment, to a greater extent than a group of randomly selected disabled adults. School
Twenty-eight of the 30 adults in this study attended school. Six completed the schooling provided by the government before they acquired their disabilities. Eleven completed the schooling available to them after they acquired a disability. Eight of these individuals have disabilities which were present at birth or before school age. Eleven others attended school, but did not complete it. The reasons for leaving school
462
ANN GOERVT Table I. Thirty Age
Sex
54 51 50 4X 45 43 3x 36 35 7s 32 30 30 2Y 29 29 2x 27 25 25 24 24 23 23 23 23 22 22
M M M M F F M M M M F F F F F M F M F F M F M M M F F M M F
N’s
IX
physically disabled adults
Type of phywal
disability Deformity of one leg Parapkqa (poho) Paraplegia (poho) Above-elbow amputation Clubfeet. bowlegged. mldget Clubfeet. short legs Paraplegia (polio or birth’?) Hemlplegia Gait deviation (poho) P~i~~lpl~gl~ Deformity of me leg Muscular dystrophy Weaknw of one arm Deformity of one hand Joint degeneration of hip. skin disease Clubfoot Weakness of legs, back Gait deviation (meningitis’?) Weak, incoordinated muscles Hemiplegla (menmgiti\“) Below-knee amputation Humpback, shortened stature C&n Paralyzed arm Paraplegta Paraplegia Weakness of legs. hands (polio) Gall dewation Weakness of legs Incoordinated muscles
Table 2. Role participation
Age at onset Birth I3 years 2 years I6 years Birth Birth Birth (?) 24 years IO month\ I7 year\ Birth IO years 4 year\ Birth 23 years Birth Birth 6 years 12 years 3 years 14 year\ Birth Blrrh I6 years Birth IX years 6 months Birth I I year\ I? years
of 30 disabled adults Male (16)
Female (14)
Total
Schooling Completed before onset Completed after onset Attended, did not complete Never attended
4 5 5 2
2 6 6 0
6 II II 2
Employment Self-employed Employed Unemployed
4 7 5
0 5 9
4 I2 14
II 2 3
5 4 5
I6 6 8
9 7
5 Y
I4 I6
I 2 I4
I 4 9
2 6 23
2
2
4
2
I
3
6
2
x
6
6
12
0
3
3
Social roles and activities
Contribution to household Primarily financial Primarily work No contribution Sexual relalionshlps Participate Do not partupate Parenting Children before onset Children after onset No children Soaal interactions Frequent with many people, including peers Some Interactions at work: few close friends in peer group Some interactlons at work or in village; occasional get-togethers with peers Limited mteractmns at work, m village, or in district: friendshIps with older people Interactions only with people who come to the home
include: academic difficulties; physical problems getting to and from school; and the need to tend to household responsibilities, such as caring for elderly parents. In five cases the mother of a disabled adult stated that she withdrew her child from school because he or she had ‘difficulty with learning’. In four
of ihese cases the‘etiology of the disability was not certain, but brain damage appeared to be present. The two men who have had no education do not know why they were not sent to school. Both have been unable to walk since early childhood, but that may not be the explanation for their lack of edu-
Social integration of the physically disabled in Barbados cation since others who could not walk were sent to school. Based on the individuals in this group, it appears that a physical disability is not interpreted by family members. especially mothers. to mean that a child should not be educated. Several disabled adults report that it was their mother who insisted that they go to school, and it was the mothers who sent their children to school until it became too difficult academically or physically. Despite the belief within the society that disabled individuals are not likely to fulfill adult roles, many mothers of physically disabled children try to provide their children with an which is basic preparation for pareducation, ticipating in some adult roles. Employment Sixteeen individuals in this group of disabled adults have some type of employment. Although the 47% unemployment rate for these thirty people is much higher than the 1980 general unemployment rate in Barbados of 12.6% [17], the rate for all disabled adults would probably be higher because of the manner in which these 30 people were selected. Five people are engaged in work that has been traditional in village Barbados: gardening, selling fish, sewing and furniture repair. Only Mr King, a tailor, works full-time. He and two others in traditional work are self-employed. None of these five people can support themselves, so each receives assistance from the Welfare Department. Eleven people are engaged in more modern types of work: hospital technician, bookkeeper, clerk, janitor, factory worker and vendor on the beach. The nine who have full-time employment are able to contribute to the support of their households. Only Miss Harris, who is the sole supporter for her son and herself, requires assistance from welfare. Two women work part-time and are not able to make significant financial contributions to their households. Each has tried to find more or different work. Most of the I4 unemployed individuals have one or more of the following characteristics: a severe physical dysfunction, an intellectual impairment, or a mother who believes that her disabled offspring is not capable of working. The mothers who did not encourage, or actually prevented, their disabled children from seeking work are those who noted that their children had ‘difficulty with learning’, or who kept their disabled daughters at home to protect them from people’s reactions, such as staring or teasing. A few mothers believe that a disabled woman would be sexually abused by men, while others simply feel that no one will hire their daughters, who should not be subjected to the certain rejection. Nine of the disabled who did not attend or complete school are among this group of unemployed, but it is not certain that lack of education prevents their employment. The severity of the disability or the intellectual impairment which made schooling difficult may also impede employment. Household Contributions to the support of a Barbadian household may normally take the form of money or work. As noted above, 9 of 30 disabled individuals
463
make significant financial contributions to the SUPport of their households, i.e. their contributions are similar to that of an able-bodied person with thetr job. The others who are employed use their income for personal needs and make only meager contributions to the rest of the household, but this does relieve others from fully supporting the disabled person. Six of the I4 unemployed people contribute significantly to the work required within their households. Two disabled women are primarily responsible for the care of a child, while one of the disabled men cares for his nieces while his sister works, and also cooks and does laundry for the household. Two other women and one other man perform specific household tasks. The eight unemployed individuals who do not make regular or significant contributions to their households include five who have severe physical disabilities or intellectual impairment. The three remaining individuals, who have weaknesses in one or more extremities, but who appear to be able to do some physical tasks, are perceived by their mothers as unable to assume routine responsibilities. Two of these three women express an interest in seeking employment, but are discouraged by their mothers. Sexual relationships Barbadians view marriage as the ideal form of conjugal relationships, but at the time of the 1970 census less than half of all adults were married [l8]. Nonetheless, all adults are expected to participate in stable sexual relationships. Roughly half of the disabled people in this study claim to have participated in at least one sexual relationship after the onset of their disability. Mr Griffiths was married and is divorced; Miss Quintyne has lived with a man intermittently for 17 years; and 12 people have either lived with a sexual partner for a short time, or had a visiting relationship, often of a short duration. Mr King states that women are willing to come and live in his house, but they do not want to be known as his girlfriend or wife. Mr Trotman says that he tried to live with his wife after his injury, but she left him. He believes that her departure was due to problems they had prior to his disability, not to his hemiplegia. A couple of men brag of their many relationships with women, but Mr Simmons is discredited by the women of his village who say that his stories are his fantasies. Several young men state that their experience with women is very limited, but they hope to find someone for a long-term relationship. The four disabled women who have had short-term sexual relationships have each had at least one child. Sixteen individuals either denied participation in a sexual relationship or did not discuss the issue. This group includes most of those with severe physical deformities, intellecutal impairments or mothers who encourage them to stay home. On the other hand, within this group six have completed their education, three work full-time, and three work part-time. Miss Harris, who has paraplegia, and Miss Mayers, who has joint and skin disease, acquired their disabilities after age twenty. Neither expects to have a sexual relationship as a disabled person. Miss Mayers explained that the only feelings a man would have toward a disabled woman would be brotherly or
464
ANN GOERDT
fatherly. Only one man who has not had a sexual relationship indicated that he would like to have one. but hc must first cam more money. He has been cmploycd for 5 years.
MOSI Barbadian adults have parented at least one child. As noted above. this is particularly important for vvomcn. but men are also very proud to have a child. Two of the men and four w’omen discussed in this paper became a biological parent to at least one child after the onset of their disabilities. Mr Griffiths. who is divorced. has two adult children. Mr Trotman, who had a common-law wife and children before his injury. had one more child after he acquired hemiplcgia and bcforc his wife left him. The four mothers in this group each had at least one visiting relationship. The youngest. Miss Alleync. is kept in the house by her own mother. who states that her daughter became pregnant after sneaking out to see a young man in the village. The mother (grandmother) now watches her disabled daughter more carefully so there will be no further mishaps. The three other women, who have one, two and three children respectively. are employed and contribute to the support of their children. Because it is particularly important to the adult status of a woman to have a child, it is not surprising that 4 of the 5 women who have had sexual relationships havse had children. Miss Quintyne did not because she is physically unable to bear a child. Meanwhile. 9 men claim to participate in sexual relationships. but only two say they have children. Some men may falsely claim engagement in sexual relationships because that is important to their status. Alternatively, men may not admit to parenthood, cithcr bccausc they arc unaware that they have fathered a child. or because they cannot afford the minimal weekly contributions to child support for which they would bc legally obliged.
While people in the middle class, including medical and social work personnel. indicate that the disabled are hidden. people in the village seldom affirm this. It is apparently rare for a family to hide a disabled member from the community. One reason for this may simply be the difficulty in hiding a person in a small house situated in close proximity to other houses. However. the large proportion of individuals in this study who have attended school, been engaged in work activities or participated in sexual relationships suggests that most families do not attempt to hide a disabled member from the view of the community. At the same time. the various degrees of social interaction experienced by the disabled in this study indicates that most physically disabled individuals are ‘hidden’ from the full range of adult activities in the community. Only four people. 2 men and 2 women, describe interactions and relationships which are typical of village Barbados. that is. they interact with people of all ages and havje close friends of their own sex and age group. Mr King. who has paraplegia from polio, conducts his tailoring business from his home, which
he rarely leaves. Nonetheless, his interactions with others are frequent and varied. The door to his sewing room is always open, and people passing by greet him or stop to chat. In the late afternoon his shop is a place where men gather to joke and gossip, Miss Quintyne, a midget with club feet and bowed legs, used to sell fruit in Bridgetown. Now. because of her obesity and high blood pressure, she remains in her village, where she maintains a wide social network. The two other individuals travel outside their villages to go to work, so their contacts arc more broadly based. Three individuals have some interactions at work. but describe their friendships as confined to a few people in their peer group. Each of the two men has a few male friends and a girlfriend. One of them. Mr Griffiths, was previously married. Miss Mayers has only female friends. Mr Griffiths is able to move about easily, but the two others require crutches. Six men and 2 women describe limited to active interactions with people at work or in their villages. and occasional get-togethers with peers of their own sex. Three of the men also have girlfriends. These 8 people have disabilities which include paraplegia. hemiplegia, weakness of two extremities and paralysis of one extremity. Five men and I woman are employed. Twelve individuals, 6 men and 6 women, have limited interactions with people at work, in their villages, or in the districts around their villages. They do not have peer group friends. but some describe friendships with older people. Mr Simmons claims to have girlfriends, but is discredited by the women in his village. Two of the women have had conjugal relationships. One is Miss Alleyne, who is now confined to her house. The other woman has three children from two men with whom she is no longer in contact. The disabilities present in this group range from a deformity of one limb to paraplegia. This group also contains all but one of the individuals who appear to have intellectual impairment. Three of the 12 people are employed part-time: one is employed full-time. Three women who are confined to their homes because they cannot walk outdoors arc extremely limited in their social contacts. Most social interactions in the village take place outside the home, so these women interact only with people who stop at the window to chat, or who stop in to borrow or loan an item. Those who do visit the houses of these women are usually friends of another member of the household. The variety of physical disabilities found within the groups described above indicates that the type of disability does not always determine the degree of social interaction experienced by disabled individuals. For example, within each level of social interaction described there is at least one person who is unable to walk due to paraplegia and one who is able to walk without an assistive device. Based on the people in this study. individuals with all types of disability participate less in the informal network of social interactions and relationships in the village than in other adult activities. such as maintaining employment or engaging in sexual relationships. Because they arc ‘hidden’ from this
Social integration of the physically disabled in Barbados important adult activity, the disabled do not receive recognition as adults from peers and neighbors.
CONCLUSION
Barbadians do not expect physically disabled individuals to fulfill normative adult roles. Their lack of expectations can be explained partly by their beliefs and concepts related to disability, and partly by their empirical observations of the behaviors of physically disabled people Beliefs related to the cause and treatment of disabilities do not appear to have a marked impact on disabled adults’ participation in normative roles. Today the causes or treatments ascribed to a disability are frequently physical ones. In the past, when people were not influenced by scientific ideas regarding causes and treatments for disease and disability, beliefs about the supernatural may have had a greater influence on their perceptions of the disabled. Now when a supernatural cause is named for the disability of a specific person it is often used to confirm an opinion about the person or family held prior to the onset of the disability. For example, if a person thought to be evil becomes disabled. the disability is viewed as a punishment which the person is thought to deserve. If a person respected by the community becomes disabled, or has a disabled child, the event is said to have happened ‘for a purpose’. The manner in which village Barbadians hypothetically rank disabilities or handicaps reflects cultural values concerning personal autonomy. While people perceive ‘madness’ and blindness as disabilities which render an individual more dangerous or vulnerable than disabilities of the body, they use the term invalid, which implies lack of autonomy, for the physically disabled. People may focus on the functional limitations of the physically disabled because their deviations from normal are so easily observed. Barbadians’ keen interest in each other’s appearance also makes them alert to an abnormality in the form or function of a specific body part, which is interpreted as a generalized abnormality or inability to function as a ‘normal’ person. Lack of expectations regarding the disabled may also be based on empirical observations of their inability to perform certain types of tasks. Individuals without the function of one or more limbs cannot physically perform many types of work and thus have a distinctly limited opportunity to accumulate wealth, to contribute financially to a household, or to share resources with peers and friends within the community. Traditionally, village Barbadians worked on sugar plantations, so many physically disabled individuals were obviously not able to work as effectively as others. Today most jobs in Barbados are located outside the villages in the service sector, particularly in tourism and the civil service. Often disabled people do not have access to these jobs because they are unable to walk for long distances or to climb the steps of the public buses. Braces, artificial limbs and wheelchairs are not readily available, and when they are, they may not solve the problem of transportation. Hence physically disabled individuals are still observed to be unable to work.
465
Mothers, like other members of Barbadian society, internalize societal beliefs and base many of their expectations and behaviors on them. However, mothers of disabled children may also recognize more potential in their children, and have greater expectations for them than the larger society. The motherxhild relationship is frequently noted in the literature on the Caribbean family [I91 as the bond which is stronger than the mother-father or father-child bond. Within the group of disabled people in this study the mother’s influence is frequently manifested in the activities of the disabled person. It was the mothers who sent the disabled children to school, and if a child did well, it was the mother who encouraged that child, especially a disabled son, to seek further training or employment. If a disabled child did not do well in school it was the mother who trained him or her to perform household tasks. When a daughter is disabled her mother may be protective and discourage activity outside the household fearing that others, especially men, will take advantage, especially of a woman, who is thought to be an ‘invalid’ or unable to ‘care for self’. Studies in the United States have addressed the issue of distinguishing the effects of societal vs personal reactions to disabled people [5,20,21]. Because of the methodological problems in making that distinction, my study did not intend to identify specific reactions of disabled Barbadians to societal beliefs or labeling vs their reactions to personal relationships or the physical limitations imposed by their disabilities. Nonetheless, it is evident that societal expectations, reflected in the label invalid, do affect the behavior of disabled as well as nondisabled people. Some disabled individuals admit that they avoid interactions outside the family and a small circle of friends because they know disabled people are considered ‘invalids’ and thus will be rejected in work or social settings. At the same time, many able-bodied employers are unwilling to hire a disabled person even though the disability does not interfere with the required task. Similarly, most able-bodied individuals appear unwilling to parent a child with a disabled person because the latter is thought to be unable to assume the responsibilities of raising a child even if the person is working or able to care for a child. The general lack of expectations regarding the role participation of the physically disabled may be based on objective evidence that they cannot perform some tasks as well as able-bodied people. But there is also evidence that disabled individuals do perform ‘normal’ activities. Almost all of the people in this study attended school; one-half of them have some type of employment; two-thirds of them make a contribution to their household; and half of them have had at least one sexual relationship. The minimal impact of the second type of evidence may result from the lack of participation of most disabled adults in the reciprocal relationships among peers and other members of the community. Their absence from these relationships eliminates them from the social process whereby village Barbadians establish their status and develop ‘respect’ within the community. Limited expectations regarding the physically disabled, and disabled people’s limited participation in normative social roles, exist in Barbados and in the
Western, industrialized nations referred to in my introduction. The disabled in developed countries may be involved in adult activities to a greater extent than their Barbadian counterparts because the former may be provided through government policies with adaptive equipment. education, vocational training. job opportunities and physical access to public buildings and facilities. On the other hand. some of the disabled in industrialized nations may be more segregated from their families and communities than disabled Barbadians because more of the former live in residential facilities provided exclusively for the disabled. In developed countries social policies and rehabilitation programs reduce the physical constraints imposed by disabilities. but cultural perceptions of the disabled continue to limit their participation in normative adult roles. In Barbados the disabled have few or no resources to reduce the physical limitations of their disabilities. In addition, they are not expected to fulfill normative adult roles, and if they do so despite the disability and limited expectations, their status as adults is still not guaranteed. The disabled’s lack of social integration in Barbados and in developed nations demonstrates that cultural perceptions related to the disabled can limit their participation in normative roles. These findings suggest that developing nations presently concerned with the social integration of their disabled citizens must address perceptions of the disabled as well as the physical impediments imposed by disabilities Hence, further indepth studies within the cultural context of developing countries are required to identify beliefs, values and behaviors which may affect the disabled’s participation in normative social roles. REFERENCES
I. At the Twenty-ninth World Health Assembly of the World Health Organization the Committee on Disability Prevention and Rehabilitation urged the incorporation of the disabled into primary health care programs in developing countries. In its recommendations the committee noted that programs must be appropriate and acceptable to the countries in which they would be implemented. Twenr.y-ninrh World Health Assemhi~. Part 1. Official Records of WHO, No. 233, p. 44. WHO. Geneva, 1976. 2. Since 1976. the World Health Organization has developed a program to promote the integration of the disabled into health care programs and also into their communities. Helander E., Mendis P. and Nelson G. Training Di.vahled People in the Community; A Manual on Communii~~-Based Rehahilitalion /i/r DwelopinR Countries. WHO, Geneva, 1983. 3. Disability prevention and rehabilitation. Report of the WHO Expert Committee on Disability Prevention and Rehabilitation. Technical Report Series 668. p. 1 I. WHO, Geneva. 1981. 4. Jordon J. E. Attitudes To~t~ard Education and Phy.vicull~ Disabled Persons in Eleven Nations. Michigan State University. East Lansing, Mich.. 1968. 5. Goffman E. Stigma: Notes on the Management q/ Spoiled Idenfiry. Prentice-Hall, Englewood Cliffs, N.J.. 1963.
6. Davis F. Deviance disavowal: the management of strained interaction by the visibly handicapped. In The O//w Sir/c (Edited by Becker II. S.). pp. I I9 137. The Free Press. New York. 1964. 7. Zola I. K. .Mi.wiq Picw~.c: .A ~‘hroukk o/ Lirkg with (I Di~whr/i/~~.Temple University Press. Philadelphia. 1982. T.. Miller E. and Gwynnc G. .A Li/i, x. Dartington To,q,rhc~: I/X, Divtrrhu/io~~ of .-1ctitudc~s .4 rouml t/w Di.whlcd. Tavistock Publications. London. 19X I. C. T/w .Soc~ro/q~~ turd So&/ P.sj,9. Sahlios-Rothschild l~holo~,,~ of Di.vuhdi/~~~ (md Rchahilicutiotr. Random House, New York. 1970. research funded by IO. This paper is based on dissertation an Organization of American States Fellowship. a Fullbright Grant for graduate study. and a NIMH National Research Service Award. Fellowship No. I F31MH0831501. Physical disability in Barbados: a cultural perspective. University Microfilms International, Ann Arbor. Mich., 1984. Il. Fisher notes the Barbadian use of obeah. or witchcraft. to cause madness and to affect courtships and personal disputes. Fisher L. E. The imagery of madness in village Barbados. Ph.D. dissertation, Univjersity Microfilms International, Ann Arbor, Mich.. 1973. 12. Reference to the significance of stealing is made m a Barbadian novel: “But stealin’ is destructive complete ‘cause it confuse the whole meaning o’ property. an’ property IS the only real thing, ‘cause the worth of a man, as you know, is the size o’ his belongings”. Lamming G. O/’ Age uttd I~tnoc~r~zc~e. p. 79. Allison & Busby, London. 198 I. S. Social inequality 13. Sutton C. R. and Makiesky-Barrow and sexual status in Barbados. In .Se.wa/ Strar$cution: A Cro.w-Cultural Vicw~ (Edited by Schlegel A.), pp. 292 325. Columbia University Press. New York. 1977. and ranking in a Barbadian 14. Barrow C. Reputation community. Sot,. C.on. Stud. 25, 106-121. 1976. 15. Sutton C. R. The scene of the action: a wildcat strike in Barbados. Ph.D. dissertation, Anthropology Dcpartment. Columbia University, 1969. 16. In 1980 198 I there were 1249 physically handicapped people on the list of welf;lre recipients. Fifteen of these people provided life histories. Between 1976 and 1980 twenty-six physically handicapped individuals obtained employment through the Employment Exchange. Seven of these people provided life histories. Eight other disabled people in my study lived in the area where I resided or were contacted through physical or occupational therapists. I7 Barhadav Ecowmic~ Report /9X0. p. 19. Mimstry of Finance and Planning, Barbados, 1981. 18 Population Cet~.su.v of Ihe Commonw~calth Curibtwa~~. 1970. Marital Status, Vol. 8. The Herald Ltd. Kingston, Jamaica, 1976. Total number of males between 15 and 64 who had never married was 32,934. Total number of males in that age group was 55.283 (p. 139). Total number of females between I5 and 64 who had never married was 36.009. Total number of females in that age group was 63,682 (p. 142). list of references regarding I9 For a thorough - family orgamzation and the role of the woman in the Caribbean familv set Nevadomskv J. Exolainina Caribbean family and household organiiation:’ a typology of the classics. J. Curih. S/ud. 4, 38 46. 1984. 20 Scott R. A. T/IP Making of Blind Men. Russell Sage Foundation. New York. 1969. 21 Gove W. R. Societal reaction theory and disabilitv. In The Sociolo~>~ of’ P/t~.vic~nlDi,suhili/~~ und Rehahilir;rion (Edited by Albrecht G. L.) pp. 57-71. University of Pittsburgh Press. Pittsburgh. 1976.