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Marginalisation and its effects on the sexuality-related potentials of the learning disabled person

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Marginalisation and its effects on the sexuality-related potentials of the learning disabled person
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    http://jid.sagepub.com/   Journal of Intellectual Disabilities  http://jid.sagepub.com/content/3/1/39The online version of this article can be found at:DOI: 10.1177/1469004799003001071999 3: 39 Journal of Intellectual Disabilities  F. Sheerin and D. Sines Marginalization and its effects on the sexuality- related potentials of the learning disabled person Published by:  http://www.sagepublications.com can be found at: Journal of Intellectual Disabilities  Additional services and information for   http://jid.sagepub.com/cgi/alerts Email Alerts:    http://jid.sagepub.com/subscriptions Subscriptions:    http://www.sagepub.com/journalsReprints.nav Reprints:    http://www.sagepub.com/journalsPermissions.nav Permissions:    http://jid.sagepub.com/content/3/1/39.refs.html Citations:   at Open University Library on September 26, 2010 jid.sagepub.comDownloaded from   39 ORIGINAL Marginalization and its effects on the sexuality- related potentials of the learning disabled person F. Sheerin, D. Sines Prejudice exists at all levels of society, finding its basis in over-generalized, learned attitudes towards those individuals who do not conform to what is perceived to be normal within that society. This prejudice has, within learning disability services, found expression in the marginalization of learning disabled people away from the mainstream of society, and their admission into long stay institutions. It is the experience of the authors that such marginalization continues to exist in both the UK and Ireland, at a functional and attitudinal level, within many contemporary learning disability services. This conceptual paper seeks to examine the effects of marginalization on the development of learning disabled people in Ireland, within the context of a proposed, integrative approach to personhood. Fintan Sheerin, BNS RNMHRGN NurseTeacher Stewart s Hospital Palmerstown Dublin 20 Republic of Ireland David Sines BSc PhD, RMN RNMH, RNT PGCTHE FRCN, Professorof Community Nursing Head of School of Health Saences, University of Ulster, Jordanstown Belfast BT37 OQB Ireland Correspondence to Fintan Sheerin, 105 Five0aks’, Drogheda, Co Louth, Republic of Ireland MARGINALIZATION IN IRISH SERVICES Whilst the philosophy of normalization (Wolfensberger 1972) has pervaded services throughout much of the western world, the movement from institutional care towards a more normalized, community-based system has only developed in many of the older Irish services, over the past 10-15 years. This philosophy is based on the principles of de- institutionalization, social integration and thede- velopment of normal patterns of life for learning disabled persons which are congruent with those of the wider population (Wolfensberger 1995). Whereas this is, in theory, a positive development, it is the contentionof the writers that a generalpolicy of segregation still pertains within the Irish situation, and that this is supported by sexually repressive attitudes amongst sections of society and staff towards learning disabled people (Rose & Holmes 1991; Behi & Edwards-Behi 1987). Whilst Nirje (1969) considered such a policy of segregation as being inline with normalization, Wolfensberger (1995) refutes it. Such segregation, based on the experience of the writers, is evidenced by: 1. The continued servicing of many community houses by the long stay institution, for provision of food and the maintenance ofhouseand garden. 2. Inadequate-use of community based facilities, such as public transport and primary health services. 3. The one-sex character of many of thesehouses. 4. Social isolation of learning disabled people, due to inadequate planning and poor social education. 5. The custodial nature of the services. 6. The perceived need to make learning disabled people more socially acceptable, rather than making society more socially accepting. 7. The lack of opportunity forfulfilment of client potentials and for developing extraneous relationships due to socialisolation and sexual segregation. Behi & Edwards-Behi (1987) have noted the influence of carers’ attitudes to sexuality, on how they approach the sexuality of learning disabled persons. This is further developed by Lundstr6m- Roche (1982), who describes the de-sexualization of disabled people, evidenced by them being referred to as ’kids’ and ’children’ instead of adult men and women’ (p. 29). This, Lundstrom-Roche argues, represents an unconscious denial of sex roles    at Open University Library on September 26, 2010 jid.sagepub.comDownloaded from   40 for these people, a view supported by the findings of Mitchell et al. (1978). The negative attitudes encountered by the writers, when questioning multi- disciplinary colleagues, regarding the sexual and more particularly, childbearing rights of the learning disabled is further evidence for this. The basis for these policies, although not overtly grounded in Eugenics theory, may relate to the influence of that movement throughout the late 18th century. It may also relate to the influence of the predominant religious force within the country, the 1991 Census of whichshowed 91.6% of the population to be Roman Catholic (Central Statistics Office 1991). When one takes into consideration that many of the older, institutional services for learning disabled people were run by Roman Catholic religious con- gregations, it may be surmized that the moral doctrines of that church bore heavily on thelives of the clientele. This is not to deny, however, the positive contribution of many of the modem Irish services that have challenged the traditional, insti- tutional approach, including those organized by parents and friends groups, as well as movements such as 1’ Arche. THESEXUAL BEING Defining sexuality Much of the professional literature investigating nurses’ attitudes towards sexuality has tended to address it as a behavioural trait (Lief & Payne 1975; Payne 1976; Roy 1983; Webb &  Askham 1987; Rose & Holmes 1991). This is evidenced by the frequent use of the Sex Knowledge and  Attitude Test (SKAT) (Lief & Reed 1972 cited in Payne 1976), which focuses solely on behavioural aspects of sexual expression. There has also, however, been a recognition of sexuality within the context of the whole person. This viewpoint has permeated the theoretical liter- ature, with the concept being related to identity (Stuart & Sundeen 1983) and interpersonal rela- tionships (Shope 1975). Hogan (1980) describes it in terms of that which makes one human, a posi- tion that is echoed by Lion (1982) and Carr (1991). The idea of gender identity has also been linked closely to sexuality in nursing literature. Shope (1975), however, suggests that sexuality relates to one’s gender orientation rather than to one’s gender identity. Behi & Edwards-Behi (1987) and Savage (1990), exploring the gender issue further, identify body image and body awareness as being aspects of sexuality, whereas Woods (1987) emphasizes the importance of sexual self-concept to sexuality. This latter viewpoint is supported by Weston (1993), who describes it as involving a continual processof self-awareness - recognizing, accepting and expressing ourselves as sexual beings. The literature therefore identifies several aspects to sexuality: behaviour; holistic integration; gender orientation; communication of identity; self- awareness and self-acceptance. Sheerin (1996) proposes that sexuality is ex- pressed through a variety of media, including gender orientation-specific behavioural norms; gender orientation-specific styles of clothing and cosmetics; as well as the development and/or maintenance of open intimate relationships with partners according to one’s gender orientation. It may also be expressed through sociocultural and emotional media, and as such, may provide an index to the sexual health, and indeed, the overall health of the person (Murray & Zentner 1989). It is apparent from the above that sexuality is a multifaceted quality that finds expression through many media. It is an essential part ofevery person, and is the quality that permeates all other aspects of being, thus promoting integration throughout the person’s psyche (Shope 1975; Burkhalter & Donley 1978; Lion 1982; Stuart & Sundeen 1983). NURSING  ASSESSMENT OF SEXUALITY RELATED NEEDS Several nurse theorists have identified sexuality openly within their conceptual frameworks and as- sessments (Johnson 1980; Roper et al. 1990; Gordon 1994), whereas others have made implicit reference to it within their statedbeliefs about the person (Rogers 1980; Roy 1980; King 1981). Many of the conceptual models, around which care is currently organized however, whilst proposing an holistic approach to personhood, then fragment the being into many parts, these parts being variously referred to as ’systems’, ’activities’, ’behaviours’, ’energy fields’, amongst others (Johnson 1980; Rogers 1980; Neuman 1990; Roper et al. 1990). Such fragmenta- tion suggests a disintegrating process that contrasts with the integrating character of holism. Reintegra- tion involves the synthesis ofinformation stored in the memory of the expert, on the basis of the recognition of familiar patterns, which havebeen encountered during many years of experience, and is, as such, a function of expert practice (Benner 1984; Dworetzky 1991; Camevali & Thomas 1993; Gordon 1994). Gordon proposes that ’whereby novices ... cluster (information) together based on a rule, experts transform the pieces into ... a wholistic pattern’ (Gordon 1994, p 147). This pro- cess, which is also termed ’chunking’, is in keeping with the observations of the writers, and with the findings of Crow (1997). Whilst this ability of the expert nurse must be endorsed, experience reveals that it is often not the expert nurse who will be assessing the patient, but rather a novice nurse. The implication of this is that the reintegrating process of chunking may be absent in many assessments. In order to address this perceived deficiency, and to provide novice nurses with a basis for assess- ment, which maintains the integrity of theperson,    at Open University Library on September 26, 2010 jid.sagepub.comDownloaded from   4I Fig. I  A conceptual representation of the developmental potential model of personhood it is proposed that the individual be viewed within the holistic context of sexuality. The concepts underpinning this developmental potentials model of personhood (Fig. 1) are based on a belief that all humans have individually deter- mined potentials for development. This belief is also reflectedin the  American  Association on Mental Retardation’s approach to disability, which assumes adaptive limitations to coexist with adap- tive skills and capabilities (Luckasson et al. 1992). The ’developmental potentials’ refer to levels of development, that individuals have theinnate capacity to attain, the magnitude of which may vary according to internal and external factors (the environment). These potentials for development may be physical, social, and/or psychological, thus correlating closely to Engel’s biopsychosocial model of the person (Engel 1977), which describes a multicausational approach, assuming there to be biological, psychological and social aspects of personhood (Holden 1990). It is, therefore, proposed that the person may beconsidered from a developmental viewpoint too, in terms of their psychological, social and physical potentials. In order to demonstrate therole of sexuality, as the holistic aspect of personhood, each of the phys- ical, psychological and social parts of the person shall be discussed in greater detail. These will be addressed from the contexts of: 1. a discussion of the component parts of each potential 2. a developmental analysis of these parts 3. an identification of therole of sexuality in each potential. Itis important too that the developmental poten- tials be examined in relation to the current environmental situations in which the individuals find themselves. In this respect, environment refers to external as well as internal aspects, which may impinge upon, or encourage, development. These environmental aspects may therefore be considered to be negative or positive. DEVELOPMENTAL POTENTIALS Physical-activational potential The physical-activationalpotential describes that part of human development, which is associated with bodily growth, function and the ability to use it in an integrated manner. The three developmental aspects of this potential are: 1. physical structural (anatomical) 2. physical functional (physiological) 3. activational ability (including skills development). Physical-structural development relates to anato- mical aspects of growth, and the current status of physical development, whereas physical-functional development refers to the physiological function of the body as measured against that of standard man and woman. This is in keeping with normal anatomical and physiological practice (Green 1976). The final aspect of the physical-activational poten- tial, termed ’activational ability’, examines the inte- gration of physical, social and cognitive aspects, in terms of the capacity of the person to use the physical potential in a meaningful and co-ordinated manner. Thisprocess relates closely to that of maturation, whereby physical growth and motor development appear to progress along a genetically programmed plan (Dworetzky 1991). Examples of various environmental situations that would have consequences for the attainment of the physical- activational potential are identified in Table 1. That there exists an interrelationship between the aspects of the physical-activationalpotential will be noted from the above. This may be clearly demon- strated by the breakdown that may be observed in peripheral tissues (physical structure), secondary to an impairment in the blood supply to that part (physical function), or by the inefficiency ofbloodflow (physical function), which may present as a result of congenital abnormalities within the heart (physical structure). Both of these may have conse- quences forthe activational ability of the individual, not in terms of normal development, but rather, in relation to the ability of the individual to perform activational tasks. Thus, the physical function of movement may be a problem for people with periph- eral vascular disease due to the deterioration of physical structure. That sexuality plays an inherent role in physical development and activational ability may be ob-served from the anatomical, physiological and activational differences recounted in anatomy and physiology textbooks (Murphy 1977; Hinchliff & Montague 1988; Gilbertson & Barber-Lomax 1994).    at Open University Library on September 26, 2010 jid.sagepub.comDownloaded from   42 Social-Integrational Potential The social-integrational potential describes the pro- cess whereby an individual achieves a position in society that is congruent with their concept of self. Thus, a person who has undergone the process of lesbian or gay identity formation (Rust 1996), and who has been accepted as such within society, may consider that they have achieved a social position that is in line with their perception of self. The component aspects of the social-integrational potential are: 1. social communicative 2. social behavioural. The social-communicative aspect of this poten- tial centres on the development of language, and on the communication of concepts and ideas to others through this medium. Language, whether verbal or non-verbal, represents the communication of complex thoughts to others, by means of a system of representative symbols (Atkinson et al. 1983). Three basic levels of verbal language are identi- fied, namely speech sounds, basic meaning units and sentence units (Atkinson et al. 1983; Morgan et al. 1986; Dworetzky 1991). True language only exists, however, when specific sounds are used in association with specific concepts. Morgan et al. (1986) argue that concepts and language are intri- cately interlinked, and that concepts form an im- portant part of thinking. Thus, the development of language is heavily interdependent upon that of cognition. The degree ofboth physical structural and physical functional development has major impli- cations for the social-communicative aspect, as anatomical abnormalities, such as organic cerebral disease and pharyngolaryngeal disorders, may result in impaired comprehension and altered language formation (Hope et al. 1989). Specific areas of the cerebrum have been identified as being associated with speech, for example Broca’s motor speech area and the sensory speech region of the lower parietal and temporal lobes. However, Hinchliff & Montague (1988) note that it is currently impossible to relate cognition and language to physiological mechanisms. The second aspect of this potential relates to social-behavioural development. Whereas the social- communicative and social-behavioural aspects have the same role in promoting social integration, they achieve it through different means. Social com- munication focuses on the development of language. Social behaviour, on the other hand, takes into account the ways that the personbehaves in rela- tion to their social environment (Dworetzky 1991). Such behaviour can only be understood, however, within the context of the environmental factors that influence it.  As with the physical-activational developmental potential, the environment may exert a major influ- ence on the potential for social-integrational devel- opment. In this respect, the external environment may be considered in terms of its physical and social aspects. These influences are summarized in Tables 2 and 3. It will be noted from the above that many inter- relationships exist between the developmental potentials. Thus, for example, normal physical- structural development of the cerebrum and larynx is important forthe social-communicative aspect    at Open University Library on September 26, 2010 jid.sagepub.comDownloaded from 
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