The potential contribution of sexuality and gender awareness

To make well-informed decisions about reproductive health, individuals need information about their body, gender and sexuality as well as the communication skills to convey their choices to their family, partners and health care providers. Gender and sexuality are at the core of each individual's identity; understanding and acceptance of these aspects of ourselves is basic to our ability to have healthy relations with self, family and sexual partners. Throughout an individual's life cycle information is needed about gender and sexuality changes according to needs of their age group. A holistic approach to reproductive health is needed, based in the community where people live, in the schools where young people study and in the community health care centers where they receive services.     

Legal Rights or Simply Wishes? The Struggle for Sexual Recognition of People with Physical Disabilities Using Personal Assistance in Sweden

The purpose of this study is to explore the lived experience of sexuality for people with physical disabilities using formal personal assistance services in Sweden, from their own perspective. This is analyzed in relation to the aims of personal assistance services according to Swedish law, which states that they should be framed in terms of autonomy, integrity and self-determination making it possible to live a good life, on the same terms as non-disabled people. Data were collected through face-to-face interviews with ten assistance users and through observations on an online discussion forum for people with disabilities. The main findings of the study concern participants?? struggle to be recognized as sexual beings in order to be able to live as desired, as well as the different strategies needed to overcome obstacles in sexual expression. Results indicate the need to train personal assistants about handling assistance users?? sexuality and sexual situations.     

Sexual Issues and Concerns: Tales of Chinese Women with Spinal Cord Impairments

Background Much has been written about the pathophysiological impact of spinal cord impairment (SCI) on sexual function in women, yet the literature offers only sparse coverage of its psychological and emotional impacts on female sexuality, and the factors which may influence the maintenance of sexual identity as a woman with physical disability.Methodology To gain insights into sexual experiences and concerns, in-depth interviews were conducted with 10 Chinese women with SCI. Narrative data on marital relationships, sexual identity, sexual knowledge, and sexual satisfaction was transcribed and the content analyzed.Results When disability intrudes in a woman’s life, sexuality is reshaped against the foundation of previous sexual experiences and expectations, especially for women who acquired disabilities in adulthood. Constructions of sexuality among these women encompassed broader areas than the sexual act alone. These included the couple’s adjustment to her disabilities, society’s perception of a woman’s image, internalization of messages about women’s roles within the family, the attitude of health professionals towards sexuality, and the onset of disability.Conclusion Sexuality is an important health concern for women who live with long-term physical disabilities and should be acknowledged by sensitive and responsive health practices. Health care professionals need to renounce the sexual myths and stereotypes and genuinely attempt to understand the possible impact of SCI on women’s sexuality.     

Specialists and Sexuality of Individuals with Disability

The article is a research report from a study on selected groups of specialists?? attitudes towards sexuality of people with intellectual and physical disabilities. 98 persons, including special educators, social workers, nurses and physiotherapists, completed semantic differentials of the author??s design. The Author??s own research concerned a broader meaning of sexuality taking into account its physical and psychosocial aspects. Sexual behavior, partnerships, contraception and sex education were among the concepts analyzed on the constructed differential. It was concluded that specialist respondents show more consent (stronger acceptance and more positive evaluation) to most aspects of sexuality of physically but not people with intellectual disabilities. Only sterilization is more accepted by them in relation to individuals with intellectual disability.     

Sexuality and People with Psychiatric Disabilities

This article explores the topic of sexuality and intimacy of people with severe mental illness by addressing a series of questions about the nature of psychiatric disability and its effects on sexual identity and behavior. After describing the characteristics of people with psychiatric disabilities, the paper explores where they fit in the disability rights movement and examines how society treats persons with psychiatric labels. Barriers to full sexual expression are explored, first, from consumer perspectives, and then from the research literature, including a look at impediments to use of contraception and safer sex practices. Finally, the analysis asks a series of questions about issues for women mental health consumers in the expression of their sexuality and access to women's health services, along with sexuality issues for gay, lesbian, bisexual, transgender, and HIV-positive consumers. Finally, the paper concludes with suggestions for ways the disability community and larger society can support mental health consumers' efforts to freely express their sexuality and combat stigmatizing societal representations of it.     

Shedding new light on the (in)compatibility of chronic disease management with everyday life – social practice theory,mobile technologies and the interwoven time‐spaces of teenage life

This article uses a socio‐material approach, social practice theory, to provide new insights into the self‐management of chronic illness. It demonstrates how this theory can bridge arguments about the respective roles of social and individual influences, and how it can foreground an oft‐overlooked aspect of the issue – the demands of self‐care technologies and consequences for participation in social life. Drawing on interviews and focus groups with 25 young type‐1 diabetes outpatients in London, UK, the study points to the conflicts that occur when disease management technologies compete for time and space with the social practices of everyday life, and when self‐care tasks threaten to interrupt the flow of social life and make people feel ‘left behind’. The paper concludes that young people are disabled by the contingent position of self‐care activities in daily life, which oblige them to compromise either their physical health or their immersion in the social world. This disabling effect would be mitigated if social practices were reorganised to make them more amenable to the time‐space requirements of disease management. A social practice theory lens can help throw light onto this issue and make a valuable contribution to the study of the self‐management of chronic illness.     

Between exclusion and emancipation: Foucault's ethics and disability

The aim of the study was to demonstrate how Foucault's ethics, which we understand as a tension between exclusion and emancipation, helps both critically reassess two disability models that prevail in the contemporary literature concerning disability, that is the medical model and the social one, and support and inspire an ethical project of including people with disabilities in spheres of life from which they have been excluded by various power/knowledge regimes. We claim, following Foucault, that such a project should be informed by critical reflection on exclusion‐generating forms of knowledge about people with disabilities and focused on individual ethical actions fostering self‐realization and emancipation of people with disability.     

The Sexuality of Adults with Intellectual Disability in Poland

Sexuality is one of the most important aspects of human life that relates to sex, one's identification, sexual role, sexual preferences, eroticism, pleasure and intimacy. It fulfils such functions as procreative, hedonistic and relationship-building as well as constitutes an integral part of human's personality. The sexuality of people with intellectual disability is a special case - both from medical, pedagogical, psychological and ethical point of view. Little available research shows that it may become a significant factor that modifies their psychological and sexual functioning. The basic poll involved altogether 133 people with mild intellectual disability. The work was carried out in 11 schools and special institutions of three provinces in Poland: kujawsko - pomorskie, wielkopolskie and dolno?l?skie (provinces of Kujavy and Pomerania, Great Poland and Lower Silesia) The respondents qualified to take part in the poll constituted a very uniform group - homogenous as regards their age of 18-25 as well as IQ level that was average for the people with higher degree of intellectual disability (HDID). Their age was of importance as in that life period one can observe the formation of first partner relationships with the clear aim of establishing a family. It is accompanied by a quick development of sexual desire and taking up various forms of sexual activity. People with intellectual disability don't form a homogenous group as regards their psychological and sexual development. In this group, one can observe both different forms of clinical mental handicap which definitely affects the whole process of sexual development. The sexual development is delayed by an average period of 3 years. The people with intellectual disability take up mostly autoerotic behaviour whereas partner relationships wthin that group are more seldom. The phenomenon of sexuality of people with higher degree of intellectual disability is an issue that needs further constant analysis. The research has also made it possible to detect what kind of sexual behaviour people with intellectual disability undertake and the value of sexuality for such people. The article deals also with some important dilemmas connected with sexual education and what factors trigger off incorrect sexual reaction including their lack in the above mentioned group.     

Discourse of needs versus discourse of rights: family caregivers responding to the sexuality of young South African adults with intellectual disability

Although most people with intellectual disability remain under the lifelong care and support of their families, there is a hiatus in research that explores the sexuality of people with intellectual disability within the family setting. Little is known about how the responses of family caregivers align with a human rights approach to the sexuality of people with intellectual disability, particularly in the South African context. This study used a constructivist grounded theory approach to explore how 25 South African family caregivers responded to the sexuality of their young adults with intellectual disability. Findings revealed that family caregivers prioritise what they deem as being the immediate needs of themselves and the young adults, over the young adults’ rights to sexual autonomy. Practitioners, guided by the human rights approach, need to understand the individual and family context so as to better collaborate with family caregivers in supporting people with intellectual disability to realise their sexual rights. We apply two theories of needs to illuminate the conflict between needs-centred ethics and human rights approaches in a context where the family caregivers are the ones determining the sexuality needs of young adults with intellectual disability.     

Counselling against HIV in Africa: a genealogy of confessional technologies

This paper contextualises counselling within a broader historical formation that links disclosure to healing and deploys confessional technologies to incite disclosure and awareness of the mysterious substance of the self. Foucault's argument that sexuality was the privileged arena for using confessional technologies to ‘produce’ the truth of the self is particularly relevant in light of the diffusion of counselling practices in Africa in the wake of the HIV epidemic, particularly with their emphasis on inciting appropriate sexual behaviour. Examination of the historical assemblage of counselling practices shows how they articulate what the self is, the nature of truth and a politics of language. This paper focuses on the genealogy of four key assumptions that express this confessional reason. These are that: (1) people can be ‘empowered’ to have control on their own lives by working on themselves, (2) secrets untold become pathogens, (3) the ability to heal requires that one first overcome personal illness, (4) the experience of sharing secrets is cathartic and healing. The genealogy intertwines four strands: that of the Unconscious as revealed by Freud and his followers, attempts to treat shell-shocked veterans of World War I, group psychotherapy and participatory research after World War II.     

Understanding, embracing, rejecting: Women's negotiations of disability constructions and categorizations after becoming chronically ill

The purpose of this article is to elucidate the various responses women have to being, or not being, categorized as disabled within specific spheres (e.g., medical, state) or places (e.g., doctor's office, work) after developing a contested chronic illness. Drawing on interviews conducted with 55 women living with fibromyalgia syndrome in Ontario, Canada, we examine how they come to understand various constructions of disability and whether or not they reflect their sense of self, and how and why they either embrace or reject external categorizations of themselves as disabled by the state or medical professionals. In doing so we contribute to the limited geographic literature which stresses the importance of spatiality and ways of being in place to ill and impaired persons' negotiations of the self and relationships with others. We find that negotiating disability was, for many, an emotionally charged and complex process, drawing on one or more strategies: reluctantly employing some meanings associated with 'being disabled' to achieve material ends, creating an understanding of disability that is most in keeping with one's sense of self, embracing other meanings to the extent that they offer a legitimate basis for identity, and/or rejecting disability in the interests of sustaining an existing identity. For those women in need of forms of state assistance such as income support and health care, state institutions exert powerful pressures to come to terms with what disability means in one's life - particularly as medical and state authorities classify people as 'disabled enough' or 'not disabled enough' for entitlement to state resources.     

Enabling frail older people with a communication difficulty to express their views: the use of Talking Mats as an interview tool

The aim of the present study was to obtain the views of frail older people with communication impairments using an innovative interviewing method, Talking Mats. People with a communication disability are often omitted from qualitative research studies since they cannot respond to the more traditional methods of interviewing. However, their views are important and they may, in fact, have additional insights because of their communication situation. The 10 participants in this study were frail older people with a range of communication difficulties with causes including stroke, dementia and hearing loss. They had all recently (within 6 months) moved into care homes. Each participant was interviewed using Talking Mats to obtain their views on four aspects of their life: activities, people, environment and self. The findings are presented in a visual way, and the four life themes are discussed with reference to the different participants. Many insights were gained, such as the participants' views of the activities which they like and dislike, and the views of some of the people in the study about their nursing home environment. The advantages of the Talking Mats as an interview method for research, practice and policy in the care of frail older people are described. The study concludes that Talking Mats is a useful and enjoyable method of allowing frail older people with a communication disability to express views which they have difficulty conveying otherwise.     

Silenced No More: A Review of Supporting Disabled People with Their Sexual Lives

Supporting Disabled People with Their Sexual Lives: A Clear Guide for Health and Social Care Professionals focuses on educating healthcare providers about the needs and barriers to sexuality for disabled people. This comprehensive volume encourages providers to openly address issues of sexuality with disabled clients. The author takes a positive approach toward disability and a clearly sexually affirmative perspective. The author includes a section on difficulties that providers may encounter in conducting sexual advocacy and promotion of sexual health. The volume includes analysis of the sexual health needs of individuals with disability, specific techniques and approaches to sexual expression, dating and partnership, the role of sexual services, and sexual diversity. Her chapter on sexuality and sex education with disabled youth is one of the most controversial areas of the many provocative topics covered. A co-author wrote a chapter on sex, disability, and human rights exploring the sexual rights of disabled people. The text is written in a very accessible, open narrative that varies from extremely detailed to quite concise. There is no serious or comprehensive discussion about concerns related to sexual abuse. Many statements presented are supported primarily by anecdotal data; while there is clearly a paucity of available empirical research on these topics, readers may question the evidence-base for many strategies presented. This book is a countercultural response to decades of overly conservative practices that have attempted to restrict and silence disabled sexuality. This is a helpful and useful tool for those seriously interested in enabling disabled people full participation in this important realm of life.     

Disabled adolescents: sexuality and stigma

This paper is designed to extend discussions of disability and sexuality, highlighting the expectations, beliefs, desires and experiences of young people with physical disability and presenting the partial findings of the doctoral research project entitled "You laugh because I am different, I laugh because you are all the same: dimensions of the quality of life in adolescents with spina bifida", which discusses the quality of life in two cultures: Brazilian and American. The perception and interest of the participants, and their need to discuss problems related to their sexuality and its implications for their families, friends and healthcare services spurred investigations of this topic in greater depth, indicating the need to address concepts of sexuality on broader bases. The discourse of these youngsters stresses four aspects related to the experience of sexuality: (1) Sexuality and care; (2) Sexuality, body image and discredited characteristics; (3) Sexuality of people with special needs from the standpoint of violence, and finally; (4) Sexuality and questions about medical information.     

Young People with Intellectual Disability Talking About Sexuality Education and Information

When young people with intellectual disability (ID) begin to explore their sexuality they face a number of challenges accessing information and support. Unlike most of their non-disabled peers, young people with ID face the challenge of developing their sexuality and relationships within a narrow and regulated social and private life. For young men with ID their sexuality is often pathologised and for young women there is a focus on hygiene, self-protection, and pregnancy. For both young men and young women, their education is dominated by a biological focus and taught as ‘rules’. Mainstream sexuality education curriculum has progressed to a more holistic approach. This holistic approach is missing from programs experienced by young people with ID. In this study we spoke to young people with ID about their experiences and opinions of the effectiveness of sexuality education. Gender-specific focus groups were conducted with 14 young men and 11 young women with ID attending transition programs in Australia. Qualitative data were analysed using a constant comparative method informed by Grounded Theory and highlighted three issues: (1) the young people knew facts and rules but not the ‘how to’ of relationships and sex (2) access to information was limited and mediated by risk averse informants (3) the young people were full of unanswered questions - they wanted to know more and do more.     

“They’re always in a hurry” – Older people´s perceptions of access and recognition in health and social care services

The article examines older people's perceptions of quality of life from the perspective of access and use of health and social care services. The data include focus group discussions with older people living alone. The data were analysed using thematic analysis focusing on the older people's collective views on health and social care services as supportive or restrictive factors for their quality of life. Two central themes were present in all the focus group discussions: the importance of accessing services and information regarding the services, and need for recognition within the services/by the professionals. Both themes were connected to the older people's desire to maintain autonomy in their everyday life despite increasing functional disabilities, which was seen as an important factor of quality of life. The older people felt that accessing and finding information about the services was difficult, and dependent on the professional's good will and the older person's own financial resources. Within the services, older people experienced a lack of recognition of their own personhood and individual needs. The participants felt that they were easily bypassed and left out of negotiations regarding their own care. The article highlights the importance of developing health and social care services and practices towards a more holistic approach recognising older people's individual needs.     

Model of Intellectual Disability and the Relationship of Attitudes Towards the Sexuality of Persons with an Intellectual Disability

The following article discusses the relationship between the model of intellectual disability and the attitudes towards sexuality of people with disabilities. This correlation has been verified during the author’s own research conducted on students of several medical faculties such as nursing, public health, emergency medical services and physiotherapy. Tools of the author’s design have been used in the research. Likert-type scale “Perspective of intellectual disability” has been used to determine the model of disability seen from the medical (individual) or social perspective. To examine the attitudes towards sexuality two tools of the author’s own design have been used: a Likert-type scale “The essence of sexuality in persons with an intellectual disability” which has been used to analyze the cognitive aspect of the attitudes, and a semantic differential with notions concerning physical and psychosocial aspects of sexuality including the affective-evaluative aspect. As expected, significant correlations have been found between the model and the attitudes both in the cognitive and the affective-evaluative aspect. Higher scores for the individual model correlated with: (a) lover scores for most aspects of sexuality of people with intellectual disability, (b) perceiving them as asexual, (c) biological determinism in the sexual sphere. The social model concurred with positive values given to sexuality of people with intellectual disability and its normalization in the sphere of its determinants and symptoms.     

The ambivalence of stigma and the double-edged sword of HIV/AIDS intervention in Burkina Faso

This article analyses the causes of HIV stigmatisation in Burkina Faso as perceived by people living with HIV/AIDS (PLHIV) and people working in AIDS-related Community Based Organisations (CBOs). Stigmatisation continues to be a pressing issue when dealing with HIV/AIDS in Sub-Saharan Africa. The article is based on direct observation of HIV-related practices within 20 CBOs in Burkina Faso, as well as semi-structured interviews or focus group discussions with 72 PLHIV and 90 professionals and volunteers working in CBOs. PLHIV were chosen by convenience sampling among the persons who accessed CBO services and were interviewed about their life quality and experience relating to HIV. Professionals and volunteers were interviewed about their strategies, their achievements, and the problems they encountered. The research was conducted in the course of three months fieldwork between September and November 2009. Our principal findings show, firstly, that moral or social stigmatisation does not in any simple way derive from fear, ignorance or inaccurate beliefs but that it is also established and continually reinforced by official campaigns addressing HIV/AIDS. Secondly, we show that stigmatisation is a socially complex and ambiguous process. Based on these empirical findings we conclude that HIV/AIDS need no longer be approached in AIDS intervention as a sexually acquired and fatal disease. When reliable access to antiretroviral drugs is in place, AIDS becomes a chronic condition with which one can live for many years, and this makes it easier to address HIV and moral or social stigmatisation by downplaying the current focus upon sexuality and morality.     

Technology, selfhood and physical disability

Much has been written in recent times of the interface between technologies and the human body. The vast majority of this literature, however, focuses on a body that is assumed to be free of physical disability. This article seeks to address this lacuna by presenting findings from an exploratory study using in-depth interviews with fifteen people with physical disabilities living in the Australian city of Adelaide. The dominant research question was to explore the ways in which technologies contribute to the meanings and experiences of the lived body/self with disabilities. The data showed that the interviewees identified several technologies that they used as highly beneficial to allowing them to transcend some aspects of their disabilities. However, the interviewees also identified significant negative aspects to the use of some technologies. They noted that such technologies could serve to mark out people with disabilities as 'different' or 'lacking', acting as a barrier to the achievement and presentation of their preferred body/self.     

Self‐reported care needs of Dutch homeless people with and without a suspected intellectual disability: a 1.5‐year follow‐up study

Cognitive impairment is a prevalent problem among the homeless and seems related to more psychosocial problems. However, little is known about the care needs of the subgroup of homeless people with an intellectual disability compared to those without an intellectual disability and how their care needs develop over time. This study explores self‐reported care needs within a broad range of life domains among Dutch homeless people with and without a suspected intellectual disability to gain insight into the transition of self‐reported care needs from baseline to follow‐up in both subgroups. This longitudinal study is part of a cohort study among homeless people who had been accepted for an individual programme plan in four major Dutch cities. The initial cohort consisted of 513 participants who were interviewed in 2011. At 1.5‐year follow‐up, 336 participants (65.5%) were also interviewed and screened for intellectual disability. Of these participants, 31% (95% CI 26.2–36.1) had a suspected intellectual disability. For both groups, between baseline and follow‐up, the number of ‘unmet care needs’ decreased significantly and the number of ‘no care needs’ increased significantly, while at follow‐up, participants with a suspected intellectual disability reported ‘no care needs’ on significantly fewer life domains than those without a suspected intellectual disability (mean numbers 16.4 vs. 17.5). Between baseline and follow‐up, ‘met care needs’ decreased significantly on housing for both groups, and increased on finances and dental care for participants with a suspected intellectual disability. At follow‐up, participants with a suspected intellectual disability more often preferred housing support available by appointment than those without a suspected intellectual disability. These findings suggest that homeless people who had been accepted for an individual programme plan with a suspected intellectual disability have care needs for a longer period of time than those without a suspected intellectual disability. Providing care to homeless people with a suspected intellectual disability might require ongoing care and support, also after exiting homelessness. Support services should take this into account when considering their care provision and planning of services.