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‘May We Please Have Sex Tonight?’- people with learning difficulties pursuing privacy in residential group settings
Abstract
Accessible summary
Everyone has the right to privacy and relationships.
Some people who live in group homes are not allowed to be private with their partner.
We will explain how this makes us feel.
We will say what should change.
Parts written in ‘bold’ font are in plain English. Read them to find out more.
Summary
Many residential group settings for people with learning difficulties do not provide individuals with the private space in which they can explore their sexual relationships in a safe and dignified manner. Lack of agreed private spaces seriously infringes the individual’s human rights. Many people with learning difficulties who lack privacy have no other option but to escape to isolated public or semi‐private spaces to be sexually active. This places individuals at risk. It is suggested that self‐advocacy driven policy guidance must be developed which must require residential services to review their practice to ensure that they accommodate residents’ need for privacy, whilst supporting them to lead safe sexual relationships.
... Ces personnes sont finalement conscientes que leurs milieux de vie sont parfois défavorables à l'expression de ces droits, dont le droit à la vie privée (66). Ces personnes font état de nombreuses restrictions justifiées par une culture de surveillance et de protection intensive limitant leurs possibilités de développer des relations affectives (45,89,92). ...
... La personne identifiée comme ayant un handicap intellectuel doit alors négocier sa sexualité pas uniquement à partir de ses propres référents, mais également selon les paramètres de son milieu de vie et de ses systèmes de soutien (55,68,92). Cette situation entraîne de nombreux effets négatifs comme le secret entourant sa vie affective et sexuelle, la réalisation d'activités sexuelles dans l'espace public ou l'adoption de comportements à risque et précipités (45,53,66,102). Wilkenfeld et Ballan (3) précisent que la distinction entre les sphères publiques et privées est un élément important de l'éducation sexuelle, dans la mesure où elle permet de différencier l'acceptabilité de certains comportements affectifs et sexuels. Il semble toutefois exister une certaine perméabilité entre ces deux sphères au sein des milieux de vie : les nombreuses restrictions que la littérature consultée illustre, ainsi que le besoin d'assistance de certaines personnes identifiées comme ayant un handicap intellectuel, font en sorte que les activités s'exerçant normalement à l'intérieur de la sphère privée sont parfois projetées au sein de la sphère publique ou d'espaces mixtes (89,92). ...
... Ces différents éléments exposent la pertinence d'une exploration plus approfondie des enjeux de négociation systémiques propres à la santé sexuelle en contexte de handicap intellectuel. Par exemple, l'absence d'espaces privés au sein des milieux de vie est susceptible de provoquer la projection des pratiques sexuelles dans l'espace public, l'empressement des conduites sexuelles, de nuire à l'intégrité personnelle et à la sécurisation du processus de consentement, en plus de contribuer au maintien du secret à l'égard de sa vie affective et sexuelle par peur de réprimandes (45,53,66,102). Ces questions sont non seulement fondamentales à l'articulation d'une sexualité sécuritaire et satisfaisante, mais sont intimement liées à la planification et au succès des interventions ciblant la santé sexuelle. ...
Sexual health and intellectual disability: a narrative literature review and its implications for nursing practice
Issues associated with affectivity and sexuality in the context of intellectual disability have recently been the subject of various interdisciplinary discussions in academia. In nursing, interventions in sexual health are supported with hesitation and those issues constitute a marginal field of nursing research. A narrative literature review was realized in order to establish a portrait of the knowledge produced on this topic in the last decade. This paper illustrates three specific research areas recently developed, namely issues related to sexual autonomy, contextual factors positively or negatively contributing to emotional and sexual life, and the experiences of people identified as having an intellectual disability in this regard. On the basis of these results, different issues related to sexuality and intellectual disability are discussed, including those associated with the negotiation process of affective and sexual life, parenthood as a mediator of emotional and sexual expression, and the inclusiveness issues of sexual diversity in health interventions. Implications for nursing are finally discussed in light of the recent development of its role in sexual health.
... In addition, limited access to privacy disables people from having meaningful opportunities to explore their sexuality and develop their gender and sexual identities, particularly if those are inconsistent with traditional, heterosexual norms and scripts (Björnsdóttir et al, 2017;Citron, 2018). Lastly, difficulties in securing private spaces might put residents at risk by forcing them to perform rushed lovemaking with little time and room for careful negotiation of personal needs, wishes, and boundaries (Hollomotz & Speakup Committee, 2009). ...
... Bearing these challenges in mind, our findings make a case for multilayered policy efforts, involving changes in the four root causes mentioned above, some of which have proven effective in other contexts (e.g., Bahner, 2019;Bates, 2019;Rubin, 2020), and others recommended by people with intellectual disabilities (Hollomotz & Speakup Committee, 2009;Turner & Crane, 2016). They include increased state resources (e.g., higher staff-resident ratio, single rooms); developing a national program on intimacy and sexuality; providing organizations with effective tools and guidance on how to develop an organizational climate and practices which foster intimacy and sexual rights; and incorporating intimacy and sexuality within social work education and in-service training. ...
Introduction
Despite recent progressive changes in policy, practices, and discourse, when it comes to intimacy and sexuality, the rights of individuals with intellectual disabilities remain unrealized. Drawing on interviews with Israeli social workers employed in residential settings, the study seeks to better understand mechanisms and factors behind this reality.
Methods
Semi-structured interviews were conducted with fifteen Israeli licensed social workers employed in small and large group homes. All interviews were transcribed and analyzed thematically.
Results
Using a temporal perspective, the identified themes are organized according to common, potential relationship stages: (a) forming a relationship; (b) practicalities of relationships: private and shared time; (c) dealing with relationship conflicts; (d) cohabitation; and (e) breakup. We trace the barriers experienced in each stage as well as the way social workers perceive both these barriers and their own role in overcoming them.
Conclusions
We suggest four root causes that underlie the intimacy-challenged life of people with intellectual disabilities in residential settings: (a) the institutional nature of residential services; (b) organizational culture and practices; (c) limited resources; and (d) the human factor.
Policy Implications
The current study suggests that to support individuals with intellectual disabilities in realizing their intimate citizenship, multilayered policy efforts are needed, requiring changes in the four root causes.
... Studies have found low levels of sexual desire in people with MID (e.g., Ignagni et al. 2016). Some studies have indicated that this tendency may be due to factors such as overprotection, lack of skills and knowledge (Hollomotz 2011), lack of privacy (Hollomotz 2008), and experiences of sexual abuse in people with MID. ...
... Individuals with MID tend to have lesser knowledge of sexuality compared with individuals without any MID, and their sexual exploration and expression are considered as a concern by mental health professionals, educators, and caregivers, who consider persons with MID as asexual or hypersexual (Kramers-Olen 2017). Lower levels of sexuality in individuals with MID may be multifactor: factors related with respect and support (Ignagni et al. 2016); overprotection, lack of abilities, and knowledge (Hollomotz 2011; lack of privacy (Hollomotz 2008); experiences of sexual abuse ; attentional deficits (Chivers 2017, Sennwald et al. 2016, Strahler et al. 2018 or low sexual maturation due to for mental age (Engelhardt et al. 2019). However, it seems that individuals with MID consider not being alone as important ). ...
According to Ekman’s model, the basic emotions are anger, disgust, fear, happiness, sadness, and surprise. These emotions are universal and have an adaptative function. However, studies on these emotions among individuals with moderate intellectual disability (MID) are limited, mainly owing to issues in sample size and sample homogeneity. The present study aimed to explore differences between a MID group (n = 10) and a non-MID control group (n = 10) in 1) the identification of basic emotions; and 2) the physiological response with images related to fear, happiness, sadness, anger, and disgust, as well as images with neutral and sexual content. A total of 29 images from The International Affective Picture System and a biofeedback measurement system were used. The results showed no statistically significant differences in the identification of the basic emotions of fear, sadness, and disgust. However, statistically significant differences were found for happiness (p = .008), anger (p = .02), and neutral images (p = .02), and minor statistically significant differences were found for images with sexual content (p < .01) in MID individuals with respect to the control group. The MID group’s physiological response was lower compared with the control group, with statistically significant differences for all emotional visual stimuli. This preliminary study showed important and interesting results for the study of emotions and sexuality in MID. Future studies should consider the sample size, sex and age comparisons, and the different levels of intellectual disability.
... These studies explore the opinions of people with ID regarding their accommodation preferences (Deguara, Jelassi, Micallef, & Callus, 2012;Inclusive Research Network, 2010;McConkey, Sowney, Milligan, & Barr, 2004) and their opinions about living in their own home with support (Bond & Hurst, 2009;Karban, Paley, & Willcock, 2013). In addition, other specific issues have been addressed, such as the autonomy people with ID have depending on the type of accommodation they live in (Björnsdóttir, Stefánsdóttir, & Stefánsdóttir, 2015) or how much intimacy people living in group homes have (Hollomotz, 2009). ...
... This phenomenon, which is mentioned by others with ID (e.g. Björnsdóttir et al., 2015;Hollomotz, 2009;Karban et al., 2013), could be the result of the dilemma experienced by professionals when they are asked to support a decision taken by the person that they do not agree with (Karban et al., 2013). Likewise, the authority exhibited by professionals in the case of persons who are subject to legal incapacitation processes could be due to the belief that the person does not have the capacity to exercise their rights responsibly (FRA, 2012). ...
The Convention on the Rights of Persons with Disabilities recognises the right to independent living. Given the lack of studies carried out in Spain, the aim of this research is to explore the barriers and supports that people with intellectual disability (ID) themselves believe affect their exercising of this right. To this end, an in-depth individual interview was designed and administered to 22 people with ID following various personal pathways. Thematic data analysis was conducted. According to the results, people with ID have highlighted the barriers and supports in different areas of their lives that affect their opportunities to exercise control over their lives, live and participate in ordinary and inclusive spaces within the community. In conclusion, this study helps to identify areas for improvement that are key to exercise the right to independent living.
... While legal regulation represents the most visible element of power relationships in this context, it can also hide constitutive elements of the apparatus of power (Foucault, 1994), including environments characterised by sexual austerity, surveillance and regulation techniques, and the absence of policies that acknowledge and facilitate affective and sexual life. As Judy's story demonstrates, this situation can itself place people 'at risk' by compromising their personal integrity (Hollomotz and the Speakup Committee, 2009): ...
... The organisation of spatial and temporal realities contributes to the ambiguity of public and private spaces (Gill, 2012;Lo¨fgren-Martenson, 2004). The lack of safe private spaces hastens sexual activity, deprives a person of the time required to ensure consent, and encourages the use of spaces that may compromise a person's integrity (Hollomotz and the Speakup Committee, 2009). This can result in a variety of reprimands and sanctions, including denial of social activities and even criminalisation of sexual behaviours. ...
Questions of sexuality and intellectual disability have now moved beyond the institutional era, and contemporary sexual health interventions have gradually been reconfigured in terms of social participation, partnership and normalising approaches. That being said, they also appear to be part of a complex negotiation process between support systems for individuals identified as having an intellectual disability. The aim of this study was to provide a better understanding of the experience of affective (sentimental and emotional) and sexual (identity and value-mediated) expression in the context of intellectual disability, as well as related factors of influence. Inspired by a critical theoretical framework and a phenomenological methodology, this research shows that these experiences are part of a negotiation process that is simultaneously systemic and intimate. It is systemic because it responds to knowledge systems specific to intellectual disability and sexuality, thus authorising a variety of interventions focused on normalising the individual. It is also intimate because these practices involve every axis of affective existence, from inhabiting restrictive spaces to reconfiguring people’s intimate relationships with themselves and others. Through these findings, nursing’s ability to recognise and advocate for this group’s sexual needs and rights is called into question.
... Individuals with ID are more likely than the general population to have had negative sexual experiences or to have been sexually abused (Abbott & Howarth 2005;Reiter et al. 2007;Hickson et al. 2008;Eastgate et al. 2011;Van Berlo et al. 2011;Stoffelen et al. 2013). People with ID often face resistance in their direct surroundings when it comes to exerting their sexual rights (Bernert 2011;McGuire & Bayley 2011), and the need for privacy in residential settings is often badly recognised (Hollomotz 2008). Family members and other support providers set different norms for themselves (or other people without disabilities) than for people with ID (Christian et al. 2002;Yool et al. 2003;Swango-Wilson 2008). ...
... The results of the present study show that there is a large discrepancy between the amount of information that describes aspects of sexuality of individuals with ID and the amount of support strategies, agreements or goals in this area. We found little references to counselling or indications for support provision in instances of negative sexual experience or abuse (Abbott & Howarth 2005;Hollomotz 2008). Furthermore, little reference was made to the use of sex education programs or other interventions related to sexuality and relationships (Löfgren-Mårtenson 2012;Schaafsma et al. 2013Schaafsma et al. , 2015. ...
Background:
Sexual rights and sexuality are important aspects of quality of life, also for people with intellectual disabilities (IDs). However, providing support in this area to people with ID poses some challenges. In this study, the content of individual support plan (ISP) documents was analysed to determine the extent to which sexuality and sexual rights are addressed in part of the ISP documents.
Method:
Content analysis was carried out on a sample of 187 ISP documents from seven different service provider organisations in the Netherlands. First, we conducted a lexical search using terms related to sexuality and sexual health. The retrieved segments were then analysed.
Results:
A total of 159 ISP documents (85%) of 60 men and 99 women contained some reference to aspects of sexuality. However, these references were mostly descriptive and offered little guidance in terms of providing support. Moreover, these notations mostly described negative or problematic aspects of sexuality. References to sexual education, treatment, intervention programs or support strategies were rarely found in the ISP documents.
Conclusions:
Although sexuality is addressed in most ISP documents, there is little information available about the provision of professional support in this area that would give people the opportunity to exert sexual rights. As sexuality and exerting sexual rights are important for people with ID as well as for other people, it is recommended that issues surrounding proactive sex education, shared decision-making and the implementation of sexual healthcare plans are addressed in the ISP.
... Even so, Charitou et al.'s (2021) literature synthesis found that people with intellectual disabilities (ID) reported multiple organizational barriers and restrictions to sexual expression, such as limited privacy and strict regulations. Similarly, Hollomotz's (2008) study on sexual relationships of people with ID in U.K. group homes reported that many homes did not provide private space in which they could explore sexual relationships in a safe and dignified manner. Prohn et al. (2022) used U.S. National Core Indicators® (NCI) data to examine the relationship between privacy rights, community participation, everyday choice, and expanded friendships. ...
In 2014, the Centers for Medicare & Medicaid Services (CMS) launched the Home and Community-Based Services (HCBS) Final Rule intended to improve the quality of HCBS for people with disabilities. The Rule focuses on improving outcomes through person-centered services and supports. These outcomes include privacy and dignity. This study reviewed state compliance with the Final Rule by examining statewide transition plans and investigating the Final Rule’s impact on privacy outcomes of adults with intellectual and developmental disabilities (IDD). We compared cross-sectional National Core Indicators® (NCI®) Adult Consumer Survey (ACS) 2012 to 2013 and Adult In-Person Survey (IPS) 2018 to 2019 data. Privacy (people letting them know before entering their home; being alone with friends/visitors at home) increased after Final Rule implementation. Individuals in the 2018 to 2019 group had 36% and 29% higher odds of being asked for permission to enter their home and of being alone with friends/guests, respectively. Age, gender, severity of ID, and several co-occurring conditions were also predictive of improvement in privacy.
... It is important to note that considering reproductive and sexual rights does not necessarily guarantee their implementations in everyday life [11]. Unfortunately, most people with intellectual disabilities not only have inadequate knowledge on their sexual and reproductive rights, but also are not supported to receive these rights [12]. Lacks of privacy, support for having a sexual partner, and support for marriage and parenting are some of the violations of these rights for them [13] Accordingly, women with intellectual disability not only need sexual and reproductive health services same as other women, but also because of their special conditions, this need is more felt in them compared to others. ...
Background
Women with Intellectual disability have many problems in their sexual and reproductive health due to their special mental and physical conditions caused by disability. This study aimed to develop and evaluate the psychometric properties of Sexual and Reproductive Health Scale for Women with Educable Intellectual disability.
Methods
This sequential exploratory mixed-method study was conducted at two qualitative and quantitative stages in Tehran, from 2018 to 2020. At the qualitative stage, in-depth and semi-structured interviews were conducted with 21 parents and caregivers of women with intellectual disability to explain the concepts and to generate items. Thereafter, the item pool was formed based on the concepts and themes extracted from the qualitative phase as well as the review of literature. At the second stage, psychometric properties of the scale were assessed. Finally, responsiveness, interpretability, and feasibility of the scale were determined.
Results
An item pool containing 95 items was produced at the first stage. At the second stage, the final version of scale was developed. The psychometric properties of this final version were then assessed and the results showed that the instrument has good validity and reliability. The results of exploratory factory analysis showed that the instrument contains seven factors. Accordingly, these factors explained 53% of the total variance of the instrument variables.
Conclusions
The results show that the SRH-WIDS with 25 items has sufficient validity and reliability, so it could be easily used by caregivers to assess the sexual and reproductive health of Women with Educable Intellectual disability.
Ethical code : IRI.TUMS.VCR.REC 1397.340.
... Manglende tilgang på informasjon beskrives også som en utfordring (Björnsdóttir et al., 2015;Witsø & Hauger, 2020). Samtidig blir de institusjonelle trekkene tydelig gjennom mangel på privatliv (Hollomotz, 2009). Beboere forteller om dører som ikke kan låses eller lukkes, og opplevelsen av at både ansatte og pårørende lar vaere å banke på døra før de entrer de private leilighetene (Björnsdóttir et al., 2015;Stefánsdóttir, Björnsdóttir & Stefánsdóttir, 2018). ...
Abstract
The right to self-determination for persons with learning disabilities is fortified with the
Convention on the Rights of Persons with Disabilities (CRPD). However, state reports and
research states that these rights are not realized in accordance to the convention. Persons
with learning disabilities participates to a limited extent in research, and thereby have less
opportunity than others to influence knowledge production. This shows a need to obtain
knowledge of their perspectives.
The thesis explores how persons with learning disabilities living in residential group-homes
experience their self-determination in everyday life, with the intention to strengthen the
voice of persons with learning disabilities in research. The study is based on material from
individual interviews and group-based creative workshops with five participants, built on
exploratory processes with Applied Theatre and other creative work-forms. The study has
resulted in one book chapter and two articles. The first publication discusses selfdetermination
as a relational phenomenon between resident and staff, the second
explores the impact of systemic conditions on the self-determination in the group-home
residences, while the third describes a method of promoting self-determination through
empowerment processes with theatre that were developed in the creative workshops.
The participants describe a situation where their self-determination is overruled by
framework factors and systemic conditions in the group-home residences. They further
reveal lack of knowledge of their own rights, and their perspectives are characterized by
subordination, low expectations, and adaptation to systems with limited scope for critical
thinking or protests. However, experiences from the workshops reveal that group-based
creative activities can facilitate the emergence of critical perspectives, by initiating
processes of empowerment through dialogue-based approaches which gives opportunities
to experiment.
The study reaffirms that the right to self-determination is not realized in accordance with
human rights and CRPD, due to institutionalized factors, deficient facilitation, and limited
knowledge of rights. The study further demonstrates the potential of creative work-forms
and highlights the need for pedagogical approaches that supports processes which
promote the individual's power over their own situation.
... Parents tend to express a more conservative attitude towards intimate relationships of people with intellectual disability than professional staff. Professionals tend to be more supportive of their partnerships and allow them significantly less supervised relationships [23,44,45], even at times ignoring institutional rules [46]. Mothers are especially cautious about the intimate relationships of their children with intellectual disability. ...
Background
Research shows that people with intellectual disability both want and benefit from relationships. Caregivers play an important role in the development and maintenance of these relationships. Barriers to relationships include lack of privacy, inadequate sex education, and lack of public transportation.
Method
The sample included 42 primary caregivers of young people with intellectual disability aged 14 to 25. Interviews were evaluated with the qualitative content analysis.
Results
Two-thirds of the caregivers reported the young people having had at least one relationship. The caregivers tended to minimize the importance of the young people’s relationships and reported, in equal measure, both positive and negative relationship skills. Caregivers described limited choice in terms of partner selection, lack of social opportunities, and low quality couple time. Parents face the detachment process with ambivalence and wish for a stable partnership for their children in the future.
Discussion
Young people with intellectual disability face barriers and limitations regarding intimate relationships. Some young people may keep their partnerships secret to avoid possible restrictions from their caregivers. Their time together is quantitatively high, but qualitatively poor due to a lack of transportation and inclusive services. Caregivers need to support the young people’s autonomy and take their relationships more seriously.
... Parents tend to express a more conservative attitude towards intimate relationships of people with intellectual disability than professional staff. Professionals tend to be more supportive of their partnerships and allow them signi cantly less supervised relationships [23,44,45], even at times ignoring institutional rules [46]. Mothers are especially cautious about the intimate relationships of their children with intellectual disability. ...
Background Research shows that people with intellectual disability both want and benefit from relationships. Caregivers play an important role in the development and maintenance of these relationships. Barriers to relationships include lack of privacy, inadequate sex education, and lack of public transportation.
Method The sample included 42 primary caregivers of young people with intellectual disability aged 14 to 25. Interviews were evaluated with the qualitative content analysis.
Results Two-thirds of the caregivers reported the young people having had at least one relationship. The caregivers tended to minimize the importance of the young people’s relationships and reported, in equal measure, both positive and negative relationship skills. Caregivers described limited choice in terms of partner selection, lack of social opportunities, and low quality couple time. Parents face the detachment process with ambivalence and wish for a stable partnership for their children in the future.
Discussion Young people with intellectual disability face barriers and limitations regarding intimate relationships. Some young people may keep their partnerships secret to avoid possible restrictions from their caregivers. Their time together is quantitatively high, but qualitatively poor due to a lack of transportation and inclusive services. Caregivers need to support the young people’s autonomy and take their relationships more seriously.
... Sexually ableist ideologies, both held by individuals and embedded within systems, contribute to the limited provision of sexuality education to PWDs. Members of the support network of PWDs (e.g., guardians, support staff, teachers) often serve as gatekeepers to sexuality information to maintain their expectation of essentialized asexuality [88] or to delimit certain forms of sexual expression [89]. For example, compared to mothers who have children with no intellectual disability, those who do perceive their children labeled with intellectual disability as less desirous of intimate relationships, they are less supportive of them having sexual intercourse, and they believe their children are less ready to learn about sexuality [90]. ...
Around the world, persons with disabilities (PWDs) experience disproportionate barriers to obtaining comprehensive, accessible, and inclusive sexual health education due to sexually ableist ideologies. Despite Ghana's more recent efforts to advance sexuality education, considerations for PWDs have not been addressed in the most recent Education Strategic Plan. To formulate future policy recommendations given limited PWD-specific research on sexuality education in the nation, the current status of sexuality education in Ghana is reviewed and an analysis of the international literature on barriers to sexuality education for PWDs is presented. Impediments to ensuring comprehensive sex education involve a western-colonist influence, current economic conditions, and religiously oriented educational structures and practices. The international analysis indicates that sexual ableism manifests in both policy and practice-based impediments to access. When sexuality education is provided, it is often inaccessible, devoid of disability-specific considerations, and communicates desexualizing messages for PWDs. To account for these barriers, recommendations consider the role of the Ghanaian Government in training and offering resources to educators as well as content-specific considerations such as accessible modalities, sex-positive messaging, and recognition of disability-specific needs. Together, these suggestions will promote inclusive sexuality education for PWDs in Ghana.
... Staff also reported that policy and guidance did not replicate what they did in services. This viewpoint has been previously documented in other research (Grace et al., 2017;Hollomotz, 2009). ...
Background: Staff member’s views and attitudes have a significant impact on people with an intellectual disability. This study explores staff attitudes and experiences of people with an intellectual disability’s expression of relationships and sexuality in Ireland.
Methods: Staff (n=86) from service providers (n=5) completed the Attitudes to Sexuality Questionnaire-Individuals with an Intellectual Disability (ASQ-ID) and open-ended questions.
Results: Multidirectional significant differences were noted on staff attitudes to sexuality based on demographic factors i.e., age, education, as well as non-demographics e.g., attendance at training, and active practising of religion. Qualitatively, three themes emerged: ‘Unsupported and Frustration’; ‘Taboo Subject Matter’; and ‘Vulnerability and Access to Education’. Staff reported a lack of service supports, dominant conservative cultures, and people with an intellectual disability’s vulnerability.
Conclusion: This study highlights the need for improved service practices and enhanced provisions for staff and the people with an intellectual disability that they support.
... In addition, in at least some cases, parents exhibit an even more conservative stance (Cuskelly & Bryde, 2004;Evans et al., 2009). Further research regarding the parents' perceptions of the sexuality of their son/daughter indicted their fears of unwanted pregnancy or sexual abuse (Garbutt et al., 2010;Haynes, 2016;Hollomotz et al., 2008;Pownall et al., 2012). ...
IntroductionDespite the emphasis on the rights of adults with intellectual and developmental disabilities (IDD) to live a full and meaningful life, many do not get the opportunity to experience sexual relationships and parenthood. Parents and service providers are key sources of support for adults with IDD. The aim of the current study was to examine their attitudes and role perceptions in order to suggest a framework through which to provide optimal support for sexual relationships and parenthood.Method
The study employed qualitative analysis of interviews with 30 parents of adults with IDD and 40 service providers. Data was collected during 2018 and 2019.ResultsFindings demonstrated that parents and service providers provided partial support in regard to the sexuality of adults with IDD, and expressed reservations and concerns. Service providers focused on the goal of teaching skills related to sexuality and protection against harm. Parents wanted to transfer the responsibility for this issue to service providers. Concerning parenting, service providers and parents held negative attitudes.Conclusions
The findings indicated a complex picture of conflicting and disorganized attitudes, by parents and service providers. Along with the recognition of rights, there are also concerns, reservations, and even objections.Social Policy ImplicationsThe current study proposes that adults with IDD should be provided with holistic support, in which sexuality and parenthood are included as part of the components that are pertinent to leading a meaningful life in adulthood.
... Bates et al. (2017b) highlighted how the service distribution system, specifically in relation to accommodation, impacts on choice and autonomy, since people with ID have very little opportunity to choose who they want to live with. As further evidence of this, Hollomotz (2009) noted that the lack of privacy in group homes means that people with ID often have no choice but to seek unsafe alternatives for sex. ...
Background: Making decisions about feelings and relationships is a challenge for many people with intellectual disabilities (ID). The aim of this article is to explore their opinions regarding the difficulties they experience in relation to having a partner and living together.
Method: Nine advisers with ID with experience in inclusive research discussed issues about having a loving partner during 8 meetings. Discussions were recorded, and a thematic content analysis was conducted.
Results: The results show that the network of social relationships, control over one’s own intimate relationships, obtaining the right support and having training in couple relationships are key elements in people with ID having a satisfying couple relationship.
Conclusions: The research gives visibility to the difficulties that people with ID encounter in having intimate couple relationships and sheds light on the need to undertake actions that contribute to their right to intimate citizenship.
... People with intellectual disabilities frequently report social and environmental barriers to their sexual expression imposed by their families and care staff ( Bane et al., 2012;Dinwoodie, Greenhill, & Cookson, 2016;Rushbrooke, Murray, & Townsend, 2014a). A recent review (English, Tickle, & das Nair, 2017) highlighted that these barriers range from the implicit, such as replacing an individual's double bed for a single (Sullivan, Bowden, McKenzie, & Quayle, 2013), to the explicit, in the form of punishment for displays of physical affection (Kelly, Crowley, & Hamilton, 2009) and not providing privacy (Hollomotz, 2009). ...
Background:
Care staff supporting people with intellectual disabilities (PWID) report accepting views on PWID's sexual expression, but people with intellectual disabilities report their sexual expression is restricted by care staff.
Methods:
We recruited a panel of 17 UK clinical psychologists experienced in helping care staff support PWID's sexual expression. We used the Delphi Method to develop consensus-based practice guidelines for UK clinical psychologists supporting care staff in this way.
Results:
Having proposed three guidelines each in Round One, panel members reached consensus (≥90% agreement) that 12 were important, falling under four themes: "Addressing staff attitudes," "Addressing uncertainty about rights and responsibilities of people with intellectual disabilities," "Locating the problem, being part of the solution," and "Supporting care staff to understand and reflect upon their role."
Conclusions:
Clinical psychologists help care staff support PWID's sexual expression by normalizing care staff concerns, encouraging reflection, clarifying PWID's rights, and prompting those at managerial and service level to support care staff.
... Such stories raise two important points: first, that young disabled LGBT + people are infantilised and desexualised (see Liddiard, 2018 for an overview) and lacking the capacity to make informed choices about sexual activity. However, as Hollomotz and Speakup Committee (2009) suggest, this apparent lack of capacity is reinforced by not providing suitable information about sexuality. Provision of such information would likely result in disabled people being seen as capable. ...
Contemporary discourse on sexuality presents a picture of fluidity and malleability, with research continuing to frame sexuality as negotiable, within certain parameters and social structures. Such investigation is fraught with difficulties, due in part to the fact that as one explores how identity shifts, language terms such as ‘phase’ emerge conjuring images of a definitive path towards an end-goal, as young people battle through a period of confusion and emerge at their true or authentic identity. Seeing sexuality and gender identity as a phase can delegitimise and prevent access to support, which is not offered due to the misconception that it is not relevant and that one can grow out of being LGBT+. This article explores the lives of disabled LGBT + young people from their perspective, using their experiences and stories to explore their identities and examine how this links to the misconception of their sexuality and gender as a phase. Taking inspiration from the work of scholars exploring sexual and gender identity, and sexual storytelling; the article is framed by intersectionality which allows for a detailed analysis of how identities interact and inform, when used as an analytic tool. The article calls for a more nuanced understanding of sexuality and gender in the lives of disabled LGBT + young people, which will help to reduce inequality and exclusion.
... Organisational practices such as the over supervision of sexual relationships due to a fear of risk (Winges-Yanez, 2014) or not allowing couples to share a bed or spend time alone (Kelly et al., 2009;Fitzgerald and Withers, 2013) impact negatively on relationship development. Environmental barriers can limit the development of intimate relationships by prohibiting people from staying overnight as they do not have a double bed or sufficient private space (Hollomotz, 2008). Such obstacles can become internalised by people with learning disabilities, resulting in a failure to recognise themselves as sexual beings and a view that sex is "dirty", even as part of a loving relationship (Fitzgerald and Withers, 2013). ...
Purpose
The purpose of this paper is to outline the work of the Supported Loving Network from its origin in academic research to the practical development of a national Network supporting relationships for people with learning disabilities.
Design/methodology/approach
First, the need for the Network is established through a review of the research literature. The paper goes on to critically discuss the Network’s progress to date including its limitations and difficulties encountered, concluding by considering plans for future growth and development.
Findings
There is evidence that having a national Network is helpful in supporting intimate relationships for people with learning disabilities. The Network is having a positive impact on professionals who support people with learning disabilities by providing a space for discussion, inspiration and to share positive practice. However, an increase in resources would enable Supported Loving to have a wider reach and possibly a greater influence on organisations that provide social care to adults with learning disabilities.
Originality/value
The research indicates that people with learning disabilities are still less likely to have a loving relationship. The level of interest and engagement with Supported Loving implies that the Network is of value to people with learning disabilities and the professionals who work with them.
... The limitations caused by environmental challenges confirm what Hollomotz (2008) found out in Britain that "many residential group settings do not provide private space in which persons with disability can explore their sexual relationships in a safe and dignified manner." Lack of privacy, he further argues, makes them have rushed and unsafe sex each time they get an opportunity of privacy. ...
Despite discrimination, isolation and marginalization, many African University students with disabilities engage in sexual relationships. Some of these relationships involve only those with disability and others are between those with and those without disability. This paper discusses the opportunities, experiences, challenges and strategies that University students with hearing, physical and visual disabilities have to start and maintain sexual relationships at Kyambogo University, Uganda. Results show that their sexual behaviours are shaped by their perceptions, the environment and African culture and traditions rooted in African Ubuntu philosophy. The conclusion is that the university provided opportunities and challenges to their sexual relationships and that those with positive attitudes enjoy healthy sexual relationships and were also better able to deal with relationship pressures that might negatively affect their relationships.
... Part of this recognition has involved increased attention to disabled persons' right to intimate relationships and sexual expression that are "satisfying, safe and pleasurable" (World Health Organization, 2016b). While research exploring the desires and challenges of disabled persons vis-à-vis forming and sustaining intimate relationships remains limited, both studies focused on caregivers' perspectives (e.g., Hamilton, 2009;Rogers, 2010;Rushbrooke, Murray & Townsend, 2014b;Rueda, Linton & Williams, 2014) and the perspectives and experiences of the disabled (e.g., Hollomotz, 2008;Kelly, Crowley & Hamilton, 2009;Knox & Hickson, 2001;Rushbrooke, Murray & Townsend, 2014a;Tissot, 2009) demonstrate that persons with disabilities strongly desire intimate relationships, but face considerable challenges and feel an overarching lack of control in doing so. ...
There is limited knowledge about the experiences of intimate relationship formation for those with disabilities, particularly amongst Indigenous populations in urban areas. In order to address this research gap, our project uses an Indigenous approach-talking circles facilitated by a Knowledge Keeper-to engage local community members in discussions about their challenges and journeys of relationship formation, and considerations of community-level efforts at improving socialization and safe meeting spaces for disabled Indigenous persons. Through a central aim of "story-catching" through semi-structured biographical narratives in talking circles, we demonstrate how Indigenous methods can be appropriately and effectively employed to generate rich qualitative data. Our research also underscores how qualitative Indigenous approaches work to foster an ethical space (Ermine, 2007) between researchers, participants, and their communities, and how this in turn encourages individual and community empowerment.
... Watson et al. (2002) indicate examples as "a lack of privacy, inability to find a partner, and restrictive institutional policies or rules" as barrier to exercising their sexual rights. For people with an ID who live in an institution, the right to privacy is poorly acknowledged (Hollomotz, 2008). Further, because of overprotection, segregation, and a lack of social skills, people with an ID are especially vulnerable to sexual abuse (Hollomotz, 2011). ...
People have sexual needs, expressions, drives, and desires. Sexuality should be a positive part of the human experience and human life. People with an intellectual disability, like everyone else, have sexual feelings, needs, and desires. However, some aspects can be essentially different for them. This warrants special attention.
... Les paramètres des milieux de vie nous semblent donc contribuer à la construction de la personne comme étant asexuelle. Ils se décrivent notamment par l'impossibilité de barrer les portes de sa chambre ou par une certaine susceptibilité aux intrusions des systèmes de soutien, mais également par la présence systématique de lits à une place dans les milieux de vie 63 . Paradoxalement, nous avons également observé différents processus de projection de la vie affective et sexuelle dans la sphère publique. ...
En contexte de handicap, la question de l’accès est constituée généralement de l’éventail des aménagements individuels et collectifs nécessaires afin de faciliter l’occupation d’espaces publics. A contrario , peu de choses sont dites à propos des aménagements possibles et potentiels requis afin de sécuriser l’espace privé des personnes identifiées comme ayant un handicap intellectuel. Ce sont pourtant ces lieux intimes, au sein desquels se développent et se déploient l’identité et l’expression affectives, qui sont susceptibles de contribuer à une reconnaissance plus soutenue de l’identité affective et de la citoyenneté sexuelle de ces personnes. Inspirée par les théories d’Erving Goffman et de Michel Foucault, une analyse phénoménologique interprétative (API) fut réalisée auprès des personnes ayant un handicap intellectuel et de leurs proches aidants afin d’explorer cette situation. Nos constats préliminaires suggèrent l’existence d’un processus de négociation complexe des acteurs, des lieux et des moments nécessaires afin de favoriser le développement de la vie affective et sexuelle. De ce fait, trois modes d’existence semblent cohabiter au sein d’une matrice complexe : la dépossession, l’habitation et l’occupation des espaces de socialisation et d’expression affective. Il est proposé d’aborder cette problématique en tant que dynamique géopolitique intégrant les processus d’exclusion des pratiques sexuelles des espaces privés, leur projection dans des espaces publics et, finalement, la juxtaposition de ces deux sphères, publique et privée dans des espaces mixtes. Nous discuterons enfin des implications de cette réflexion sur la « question de l’accès » et sur les politiques publiques visant à diminuer la discrimination systémique ciblant les personnes identifiées comme ayant un handicap intellectuel.
This article examines how queer disabled individuals navigate the process of selecting intimate partners and how disability uniquely influences and enriches their relationships, with a particular focus on the positive aspects. We draw on 31 interviews with S2LGBTQ+ people labelled/with developmental and/or intellectual disabilities in Alberta, Canada. Throughout the current study, participants discussed experiences of ableism, strategy in choosing intimate partners, and how they challenge societal ideals of sexuality, as many expressed the positive aspects of their experience with their disability about their sexuality. The study reviews how individuals with developmental and/or intellectual disabilities in the 2SLGBTQ+ community engage and challenge current norms of an intimate relationship with the multitude of societal stigmas often forced on their sexual lives.
Introduction
The paternalism characterizing pity has long been critiqued by people with disabilities, including for fueling the sexual rights restrictions of women labeled with intellectual disability (ID). We used Fiske’s Stereotype Content Model (SCM; Fiske et al., 2002) framework to examine majority group women’s perceptions of ID-labeled women and the relation of pity to their support for ID-labeled women’s sexual rights and related policies.
Methods
In 2020, we surveyed 307 majoritized (i.e., White, heterosexual, and cisgender) adult women in the U.S. through an online recruitment platform. We elicited their perspectives regarding four marginalized groups of women, including those who are labeled with ID, low-income, adolescents, and lesbians.
Results
Women labeled with ID were viewed as more warm than competent and were regarded with pity more than other groups of marginalized women. Evaluations of competence were associated with support for sexual rights and related policies of ID-labeled women, but not women in the other marginalized groups.
Conclusions
These results underscore disability scholars’ and activists’ concerns that pity is particularly directed toward ID-labeled women and that it may undermine others’ support of their sexual rights and opportunities.
Policy Implications
In response, we advocate for a broader conception of competence and greater social integration. To uphold inalienable sexual rights for all ID-labeled women, we argue for policies that entitle women to enhanced resources as they direct their own sexual lives.
In their line of duty, all healthcare and social workers may encounter persons with disabilities as clients, service users or patients. Usually, the context will be public or private services that have a duty to promote inclusive equality. In turn, inclusive equality depends on accessibility and accommodation. Healthcare and social workersʼ first challenge is to ensure that the services they provide are accessible. Persons with disabilities should not experience the services as less useful or more strenuous to access than other people do. A second challenge is when taking part in designing interventions for persons with disabilities, healthcare and social workers need to consider that the problem they aim to solve or alleviate may arise from features of the context where the problem presents itself, as well as from features of the persons themselves. Taking for granted that it is they who must adapt to the context may contribute to upholding discriminatory conditions. Responding adequately to these two challenges requires insight into what features of environments may constitute disabling barriers for persons with different types of disabilities. Based on Norwegian and international studies that examine the experiences of persons with disabilities, this article formulates nine research-informed suggestions for how healthcare and social workers may contribute to dismantling disabling barriers to promote a more accessible and inclusive society for persons with disabilities.
This article offers perspectives shared by self-advocates in the first phase of a community-based participatory research project untaken to address barriers that individuals with intellectual disabilities face with respect to sexual health knowledge. Using descriptive qualitative methods, we interviewed 19 individuals with intellectual disability about their experiences and knowledge related to sexual health. The research question guiding this project was: What are self-advocates’ with intellectual disabilities experiences learning about sexual health and sexuality? The findings highlight that participants faced barriers and lack of access to sexual health education, and while they learned about sexual health through formal sexual health education, frequently this knowledge came through lived experience. Finally, the findings underscore that participants knew what they wanted with respect to sexual health education and offered recommendations. The importance of accessible sexual health education for self-advocates that supports their rights and desires to express their sexuality and sexual agency is highlighted.
Drawing on interviews with 46 adults with intellectual disabilities in Ontario, Canada, this article suggests a different starting point in understanding the constraints that limit which sexual fields are available to people with intellectual disabilities. Because of surveillance, infantilisation and control, people with intellectual disabilities sometimes have to claim and convert other spaces such as day programmes, group homes and other residential settings into sexual fields. Without understanding these experiences, we may not recognise these intellectual disability sexual fields as settings for the pursuit of intimacy and love. These are valuable insights that bring into view how some marginalised sexual actors may covert social fields into sexual fields as a means of responding to lack of access to and exclusion from mainstream sexual fields.
Background:
People with intellectual disability contend with significant restrictions to their sexual expression and partnered relationships. This review examines the types of recommendations scholars offer in their qualitative research involving participants with intellectual disability discussing sexuality and intimate relationships.
Method:
A systematic review of peer-reviewed studies published between 1972 and July 2018 yielded a sample of 26 studies. Thematic analysis was used to taxonomize scholars' recommendations.
Results:
Six distinct forms of recommendations were identified. The most frequently offered and most strongly emphasized recommendation across studies aimed to change individuals with intellectual disability. In contrast, a minority of studies prioritized engaging individuals as informants, eliciting individuals' wishes, enabling relationships and fostering ideological change. No studies placed the greatest weight on promoting systems change.
Conclusions:
Recommendations in the literature have predominantly emphasized individual as opposed to environmental changes. I consider the ramifications of this and argue for a reorientation towards systems change.
L’éducation sexuelle est dispensée en Suisse dans les écoles depuis environ 50 ans. Elle a aussi sa place dans la plupart des écoles et des institutions spécialisées de Suisse romande. La nécessité de dispenser ces cours dans le cadre scolaire et son efficacité figurent désormais dans les conclusions d’un rapport du Conseil fédéral, accepté en 2018. Toutefois, sait-on vraiment comment dispenser ces cours ?
Cette étude porte sur les contenus, et plus précisément les normes de genre, qui sont transmis dans les cours d’éducation sexuelle dispensés à des élèves scolarisé·e·s dans des milieux spécialisés. L’objectif principal de cette recherche est de mettre à jour les processus de construction du genre dans ces cours et de saisir comment les biais de sexisme et de capacitisme, à savoir les attitudes discriminantes faites aux personnes dites non-valides, impactent le discours des spécialistes en santé sexuelle qui dispensent ces cours. Pour atteindre ces objectifs, 105 leçons d’éducation sexuelle ont été observées et filmées durant deux ans dans des écoles spécialisées de Suisse romande. Ces observations ont été complétées par des entretiens d’explicitations et des entretiens semi-structurés avec les spécialistes en santé sexuelle qui dispensent ces cours. Si un volet quantitatif a été utilisé pour comparer les contenus entre les cours donnés aux garçons et ceux donnés aux filles, les données ont principalement été approfondies grâce à une méthodologie qualitative : l’analyse inductive générale (Thomas, 2006).
Les résultats montrent d’abord que les garçons reçoivent plus d’informations quant au plaisir sexuel, tandis que les filles sont plus informées sur les risques. Par soucis de ne pas gêner leur compréhension, les spécialistes ont recours à des stéréotypes de genre pour simplifier les contenus. Le handicap agit alors comme un renforçateur des normes : l’approche hétéronormative est très présente dans les milieux spécialisés et masque la diversité sexuelle. Le contrôle sur les comportements des élèves est marqué, il est surtout exercé sur les filles : il règle la distance à mettre avec les hommes quand elles deviennent pubères, mais aussi leur façon de s’habiller. Ainsi, les spécialistes en santé sexuelle ne soutiennent pas seulement la construction d’une féminité, mais contribuent à construire une « bonne » féminité. Ces tendances illustrent la complexité du travail des professionnelles et la difficulté pour l’éducation sexuelle spécialisée à s’extraire des normes de genre.
Background
Some adults with intellectual disabilities need support to access the Internet. This study explores how support workers understand their role in facilitating Internet access for intimate relationships.
Method
Eight support workers in the West Midlands of the UK were interviewed face‐to‐face, using semi‐structured interviews and a thematic analysis was used to interpret the data.
Results
Three main themes emerged; social and organizational dilemmas (including sub‐themes of; role and moral positioning, expectations of support, and protected and reflective space), power and position and policy dilemmas.
Conclusion
Support workers said that adults with intellectual disabilities should have access to the Internet for intimate relationships. There was a range of views on whether it was their job to support this. A lack of training in Internet use was highlighted.
This chapter examines the way that the choices of Israeli adults with intellectual disabilities are shaped by different disability laws and other state policies in two domains: legal capacity and housing services. In Israel, legal capacity issues are regulated by the 1962 Legal Capacity and Guardianship Law, which has recently been amended to provide preference for supported decision-making alternatives over guardianship. We show how prior to the amendment the law and its practice infringed on individuals’ right to freedom and autonomy, especially given the extensive use of plenary guardianship and lack of meaningful supervision and regulations. An additional concern is related to the limited consideration given to the individuals’ voice in guardianship appointment processes. The new amendment moved the Israeli legal capacity system a major step away from this guardianship regime. This positive change is currently very much on paper with several concerns and challenges still in need of being addressed. With regard to housing services, we first focus on the process through which services are provided to adults with intellectual disabilities and the role assigned to service users in the process. We then describe the current housing solutions available in Israel, from the most common, large congregate facilities to community apartments and family homes. Finally, we show how each of these living schemes affects the individuals’ right to choice in their daily lives. We conclude by providing several recommendations that represent initial steps in overcoming some of the aforementioned challenges within the two fields.
The sexual expression of persons with intellectual disability is a neglected area, more particularly in residential facilities. This article is based on research to explore the perceptions of sexuality of persons with disability in residential facilities in Gauteng, South Africa. Results pointed to stereotyping, infantilisation and the sexuality of persons with disability not being prioritised at institutions, as evidenced in oppressive practices and policies pertaining to lack of privacy, denial of intimate relationships, lack of sexuality policies and paucity of sexual health education programmes at the residential facilities.
Background:
A particular challenge facing parents of children with intellectual disabilities occurs when their adult children with intellectual disabilities has an interest in pursuing couple relationships. This study explores parents' perceptions regarding the nature of couple relationships, the right of their adult children with intellectual disabilities to pursue such relationships, the difficulties their children encounter and their own role in providing support.
Method:
Interviews were conducted with 30 parents of adults with intellectual disabilities who had left home for independent and semi-independent living arrangements. A thematic content analysis was conducted.
Results:
Whereas parents used "mutual support" to characterize couple relationships in general, they viewed their children with intellectual disabilities as primarily focused on "physical intimacy" and the couple relationship as a "status symbol," as well as expressed reservations about their becoming parents.
Conclusions:
Parents should be helped to adopt a more consistent and positive attitude towards their intellectual disabilities children's pursuit of couple relationships.
The sexual expression of persons with intellectual disability is a neglected area, more particularly in residential facilities. This article is based on research to explore the perceptions of sexuality of persons with disability in residential facilities in Gauteng, South Africa. Results pointed to stereotyping, infantilisation and the sexuality of persons with disability not being prioritised at institutions, as evidenced in oppressive practices and policies pertaining to lack of privacy, denial of intimate relationships, lack of sexuality policies and paucity of sexual health education programmes at the residential facilities.
Child sexual abuse (CSA) is a prevalent issue that is often addressed through prevention programs directly implemented with children. However, as explored using an ecological systems lens, multiple, interconnected factors may influence CSA, each of which must be considered in prevention efforts. Specifically, at an individual level, race, gender, ability, knowledge, and developmental level and age may impact a child’s risk of experiencing sexual abuse. Families, professionals, and perpetrators within the child’s microsystem may directly impact a child’s experience with sexual abuse, and they may be impacted by the exosystem which can encompass elements such as media and curriculum. Furthermore, each of these spheres of influence may be impacted by the macrosystem, including cultural beliefs and practices around race, gender, sexuality, power, and justice. As with the children themselves, each of these variables change with time (i.e., chronosystem). This review highlights elements within each tier, exploring how it may impact—and be impacted by—child sexual abuse.
Examining literature that tells us what people with intellectual disability (PWID) think and feel about their sexual lives may enable families and professionals to offer a more person-centered approach to education and support. Examining the voices of many individuals across several studies may provide more convincing evidence about the experiences of these individuals-turning a solo into a chorus. Thus, the purpose of this article is to describe the results of a metasynthesis of qualitative studies highlighting the voices of PWID with respect to relationships and sexuality. Combining the results of 16 qualitative studies, 271 participants with intellectual disability were interviewed individually or in focus groups about their feelings and experiences regarding intimate relationships. Studies were conducted across Europe, in Australia, China, and in the United States. A little more than half of the participants were male; ages ranged from 13 to 89. Results revealed two competing themes of control and desire. Participants across studies desired friendships and close interpersonal relationships, yet were restricted from developing these relationships by policies, program staff, and family members.
Accessible summary
• Support workers' attitudes towards the sexuality of people with intellectual disabilities are important. They can influence the support people with intellectual disabilities receive regarding their affective and sexual life.
• Six support workers talked about their personal experiences. They talked about what they found easy and difficult when helping people with intellectual disabilities express their sexual life and needs.
• They said that sexuality is a right, a health matter and an important need. They also said it was sometimes difficult to include sexuality in their work.
• They also said they often feel insecure and uncertain about how to help because sexuality is a difficult subject to talk about. They wanted to help people make their own decisions, but also wanted to protect them if needed.
Abstract
Background
In the last decade, the evolution of support workers' attitudes towards the affective and sexual lives of people with intellectual disabilities has been described as increasingly positive. However, restrictive attitudes targeting affective and sexual life are still documented.
Material and methods
This study aimed to explore the ethical implications of support workers' experiences concerning sexuality in the context of intellectual disabilities in everyday practice. This inquiry was guided by the following research questions: (a) In the context of intellectual disabilities, what meanings do service users' sexuality have for support workers? (b) How are those meanings translated into practice? Inspired by critical phenomenology, in‐depth individual interviews with support workers were conducted and analysed.
Results
One superordinate theme (Negotiating Interventions) and three themes were identified: “Crossing Organizational Borders,” “A Duty to Act Despite Uncertainty” and “Navigating Competing and Contradictory Discourses.”
Conclusion
Support workers' experiences related to sexuality in the context of intellectual disabilities are influenced by how they define their role in a clinical context. This role is influenced by how affective and sexual life is included in practices, local policies and interdisciplinary work. Despite positive attitudinal changes, sexuality is still regarded as a sensitive topic capable of endangering both service users and support workers.
This article highlights the importance of recognizing both the ontology of impairment as it relates to the creation of the disabled identity as well as why articulations of the disabled identity being ‘crip’ obfuscate potential politics. Examining how the disabled identity has been cast as a coherent social and political category, rather than the messy and complicated identity it truly is, I argue the adoption of a post-structuralist orientation by activists and advocates is bad for disability politics. Providing two examples, the first focusing on a publicized rape case of a person with an intellectual disability and the second on the importance of disability rights claims based on visibility of impairment, I show how articulations like those made in crip theory can have serious, negative implications for the lived experience of people with disabilities. I conclude with a call for disability studies scholars to engage disability politics in their work. © 2019
Comedy and humour have frequently played a key role in disabled people’s lives, for better or for worse. Comedy has also played a crucial part in constructing cultural representations of disability and impairments, contributing to the formation and maintenance of cultural attitudes towards disabled people, and potentially shaping disabled people’s images of themselves. As a complex and often polysemic form of communication, there is a need for greater understanding of the way we make meanings from comedy.
This is the first book which explores the specific role of comedic film genres in representations of disability and impairment. Wilde argues that there is a need to explore different ways to synthesise Critical/Disability Studies with Film Studies approaches, and that a better understanding of genre conventions is necessary if we are to understand the conditions of possibility for new representational forms and challenges to ableism.
After a discussion of the possibilities of a ‘fusion’ between Disability Studies and Film Studies, and a consideration of the relationships of comedy to disability, Wilde undertakes analysis of contemporary films from the romantic comedy, satire, and gross-out genres. Analysis is focused upon the place of disabled and non-disabled people in particular films, considering visual, audio, and narrative dimensions of representation and the ways they might shape the expectations of film audiences.
This book is of particular value to those in Film and Media Studies, and Critical/Disability Studies, especially for those who are investigating more inclusive practices in cultural representation
A pesar de la ratificación de España de la Convención sobre los Derechos de las Personas con Discapacidad en 2007, son escasos los estudios sobre la situación de las personas con discapacidad intelectual (DI) respecto a su derecho a la vida independiente (art. 19). Con el objetivo de analizar las barreras, los apoyos y los retos que inciden en el ejercicio de este derecho, se realizó un estudio cualitativo con el que se aplicaron 10 grupos focales y 22 entrevistas individuales a personas con discapacidad intelectual, 5 grupos focales con familias y 33 entrevistas individuales con profesionales. Los resultados de la investigación ponen de manifiesto la necesidad de garantizar la universalidad del derecho a la vida independiente, ofrecer apoyos personalizados de calidad y desarrollar acciones formativas y de sensibilización en materia de derechos con los distintos actores implicados.
Background:
The normalisation movement calls for more recognition of the sexual rights of people with intellectual disabilities to challenge classically paradoxical cultural beliefs: 'hypersexual' versus 'asexual'.
Aims:
This meta-ethnographic qualitative synthesis aimed to explore the voices of people with intellectual disabilities in regards to their experiences and perceptions of sexuality using a Coordinated Management of Meaning framework to derive new conceptual understandings of how their sexuality exists within multiple contexts.
Methods and procedures:
A systematic literature search and quality assessment yielded 16 studies that met the inclusion criteria and were synthesised following the method of meta-ethnography.
Outcomes and results:
Four core themes were identified; 'Sociocultural Norms'; 'Under Others Power'; 'Sexual Identity' and 'Sexual Experience'.
Conclusions and implications:
Application of the hierarchical Coordinated Management of Meaning model suggested caregivers contextual beliefs about people with intellectual disabilities' sexuality inhibited or facilitated positive expressions of sexuality over and above individual needs and desires. Rights-based cultural messages provided the only context that led to positive sexuality outcomes and research that explores sexuality within this context is much needed. The Coordinated Management of Meaning model identified by this research may act as a framework to support the reflective-practice of caregivers.
Background:
Research into how people with intellectual disabilities (ID) pursue intimate relationships in care settings presents some contradictory findings; despite increasingly liberal staff views, service users experience significant restrictions. This study attempts to explore this gap within a secure hospital, examining service user's representations of staff discourses about sexuality and intimate relationships.
Method:
Semi-structured interviews with eight service users with intellectual disability were analysed using critical discourse analysis.
Results:
Analysis enabled construction of 11 themes falling into three categories. Dominant discourses appeared to maintain the integrity of the institution, enable staff to occupy a position of power and demonstrate service users' responses to perceived control.
Conclusions:
Discourses around sex appear to serve the interests of staff and the hospital, while being restrictive and often incomprehensible to service users. Implications for service development, and future research directions, are considered in the context of "Transforming Care."
This paper is based upon ideas developed by the authors during their past 6 years work on issues of sexuality and sexual abuse in a wide variety of learning disability settings in Britain. The paper argues that some features of service design in themselves make sexual abuse more likely to occur. It suggests ways of reducing risk, which should work alongside the more usually suggested educative approaches to individuals and groups of vulnerable people.
The Age of Consent; Young People, Sexuality and Citizenship addresses the contentious issue of how children's sexual behaviour should be regulated. The text includes: A unique history of age of consent laws in the UK, analysed via contemporary social theory A global comparative survey of age of consent laws and relevant international human rights law A critical analysis of how protectionist agendas shaped new age of consent laws in England and Wales in the Sexual Offences Act 2003 In-depth theoretical discussion of the rationale for age of consent laws An original proposal to reduce the age of consent to 14 for young people who are less than two years apart in age Responding to contemporary concerns about young people's sexual behaviour, sexual abuse and paedophilia, this book will engage readers in law and socio-legal studies, sociology, history, politics, social policy, youth and childhood studies, and gender and sexuality studies; and professionals and practitioners working with young people.
The relationship between concepts of disability, group membership and self-concept was examined. It was argued that people with learning difficulties have been categorised, by non-disabled people, as 'belonging' to a devalued social group with a rigid boundary based on IQ level. Findings from studies of self-concept have shown little evidence of a sense of belonging. It was suggested that people with learning difficulties may prefer not to identify with this social group because of the negative effect it may have on their self-esteem. The analysis based on intergroup and social identity theories proposed that people with learning difficulties may be encouraged in creating a positive self-concept by abandoning the IQ criterion for social categorisation; softening the boundaries between disabled and non-disabled people; and adopting collective rather than individual strategies for social change.
This paper examines the relationship between Self Advocacy and the disability movement in Britain in the light of social movement theory. Using the concept of 'collective identity' as it is explored in social movement theory, the analysis examines why the disability movement's promotion of a strong disabled identity may be difficult to achieve for all its constituents, particularly people with learning difficulties. Additionally the concept of symbolic production within social movement theory is used to explore how the movement uses the social model of disability as its 'collective action frame'. It is argued realignment of this frame is taking place within the movement and is reflected in debates within Disability Studies about the role of impairment. The voices of people with learning difficulties remain silent in this debate. The paper concludes by arguing for the recognition of social, psychological and cognitive difference as pre-requisite to an inclusive theory and politics of disability.
Within such a short-time self-advocacy has become not only fashionable amongst organisations of people with learning difficulties, but also with service providers and non-disabled individuals who have worked in traditional services. The concerns are that self-advocacy has become a process of consulting with users about what they want from services which are usually designed and delivered by non-disabled people. This had led to people recognising and accepting choices that are on offer by non-disabled people. As a consequence an artificial boundary around self-advocacy has been created which has led to people only speaking up about what society is prepared to make available (usually in form of segregated and supervised services) rather than challenging the (lack of) power that people with learning difficulties have in their lives. For people with learning difficulties to gain real change in their personal lives self-advocacy needs to be developed to ensure they not only have the communication skills, but have an appreciation of the importance of changing rules, policies and laws which institutions, local authorities and Governments make to ensure their rights are protected. If they have an appreciation of laws and policies it will result in real change and self-advocacy won't be a tool for service providers. Also, self-advocacy must include speaking up about alternatives to choices being offered, recognising the importance of supporting one another in common areas of concern and to challenge the political system to legislate to provide relevant changes. I have developed a self-advocacy framework model which includes all the elements needed to advocate and achieve permanent change.
The past few years have seen the development of an important debate over methodology in disability research. The rise of emancipatory and participatory methodologies has meant that disabled people are making increasing demands to be included in the research process. The present paper will examine this debate and its implications for learning difficulty research. The article will discuss the reasons why participatory methodology is gaining greater acceptance than emancipatory methodology among learning difficulty researchers by examining the position of participatory research in the methodological traditions of social research into learning difficulty.
Accessible summary
We talked to some men with learning disability about sex and relationships. Some people lived in the community, and some people lived in hospital.
The men knew quite a lot about sex. Most people said they got good support from their keyworkers.
Some people were asked for sex when they did not want it. Some people were made to have sex that was not safe.
We have some ideas about how men with learning disabilities can speak up for themselves about sex and relationships.
Summary
We aimed to explore in detail the sexual lives and behaviour of men with mild learning disabilities living both in community and in secure hospital settings. We wanted to generate hypotheses about them and identify potential unmet needs. We used a narrative interview that focused on areas such as relationships, sex education, contraception and the attitudes of others towards the participants’ sexual lives and orientation. We used the constant comparative method to analyse transcribed interviews. Several clients reported engaging in unsafe practices despite being aware of the risks. Participants generally felt that services had shifted from a paternalistic to a more supportive approach towards their sexual lives and orientation. Experiences with other men were commonly reported. Several participants reported being pressurised into sex as adults. In our sample, sexual knowledge did not lead to safe sexual practices. The good rapport with services reported by the participants may be utilised to provide further education and empowerment to improve the safety of sexual practices in this group. Other ways of improved service delivery are suggested.
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