How can social workers better promote the sexual wellbeing of adults with intellectual disabilities?
Introduction and Aims of Review
Adults with intellectual disabilities navigate experiences of intimacy with little support, with wide ranging and negative implications. Social workers are largely interested in sexuality when it becomes a problem within safeguarding, but are less used to speaking about ‘everyday sexuality’ (Dunk, 2007) i.e. how sexuality is constructed according to social determinants. AWID are often constructed as desexualised and little action has been taken to promote awareness and conversation around their everyday sexuality. This thesis argues that social workers have a duty to promote the sexual wellbeing for AWID and using international examples provides suggestions for how they can meet this responsibility. This argument is based on the following posits 1) sex education is largely inadequate, particularly for marginalised communities, 2) AWID do not receive appropriate support to realise their right to sexual wellbeing 3) social workers have an ethical and statutory duty to tackle this problem. Essentially, this is not just a problem, it is a social work problem.
The Issues with Sex Education
To address the first posit, sex education has historically relied on cis-heteronormative, patriarchal, and ableist knowledge. Tepper (2000) illustrates how dominant cultural portrayals of sexuality ‘imagine sexual pleasure to be the privilege of young, white, cis-gender, thin, heterosexual, non-disabled individuals’ and as such sexual pleasure is not recognised as a right for marginalised populations. Sex education purports to focus on ideals of safety, but in doing so excludes other elements of sexual intimacy such as pleasure, enthusiastic and informed consent, and fails to apply these through a differently-abled lens (Addison, 2006; Ashcraft, 2006; Boehning, 2006). For example, advocating abstinence undermines the importance of pleasure and exploration, introducing themes of guilt and shame. These stigmas discourage those experiencing abuse from reaching out due to fear of judgement (Carson et al, 2002; Firestone et al, 2006). Mainstream sex education does not cater for marginalised communities and is inadequate preparation for the complex architecture of intimacy.
Situating in a Social Care Context
Considering the next two posits, I argue that social care is too risk-averse and as a result professionals do not holistically support the sexual wellbeing of AWID. Dunk (2007) in her research on reintroducing sexuality education into social work, writes ‘sexuality has been couched in risk narratives, including those that stem from moral or religious dogma and those perpetuated from harm reduction messages’. Social workers often don’t conceive a healthy sex life as a social care need protected under the Care Act 2014 (see ‘The Policy and Legislative Framework’) [CA2014, s1(2)] (Firestone et al, 2006; McCave et al, 2014, Miller & Bryers, 2016). Instead professionals approach sex and sexuality as a problem to be solved and pathologized (Myers & Miller, 2007) or a risk to be mitigated. That being said, it is important to recognise the disproportionately high risk of sexual abuse of AWID and social workers’ duty to mitigate this [CA2014, s42]. However protective measures should not be so risk-averse that promoting sexuality as a source of pleasure and wellness is forgotten or neglected (McCave, Shepherd & Winter, 2014) .
Tackling this issue is a social work duty according to Social Work England Professional Standards (SWE, 2012) and the PCF framework (BASW, 2018). Social workers should be committed to strength-based practice, social justice, and an ecological approach to need and health (SWE, 2012, 1; Brofenbrenner, 1979) which includes identifying, reporting, and overcoming social and institutional barriers to promoting sexual wellbeing (BASW, 2018, PCF4 & 8; SWE, 2012, 6). Not only do they have the skills for the job, but their professional mandate enables them to engage residents in therapeutic practice, liaise with other services such as sex therapy and education, and exercise authority over residential settings through funding and auditing. Furthermore, their power within organisational culture positions them as key agents in shaping political and public perception (Frawley & O’Shea 2020; SWE, 2012, 5 & 6). The unique positionality of social workers within the intimate lives of residents equips them to promote their sexual wellbeing (SWE, 2012, 1 & 2).
Terminology
I choose to veer away from language implying an innate vulnerability of AWID. I am aware that ‘vulnerable’ is a term used within social care to indicate someone who may require support because of their various needs. However, there is significant literature to suggest that even with the right intentions, using the term can be a self-fulfilling prophecy, making those described as vulnerable feel a lack of power and agency. Shakespeare (2014) argues that the word is often invoked to deny AWID the right to make choices, take risks, and live independently. Hollomotz (2011) argues that conceptualising AWID as vulnerable can reinforce professional power hierarchies and ‘allow people to be subjected to paternalistic actions preventing them from developing their own resilience or coping mechanisms’. Therefore, in this thesis I use the term ‘targeted’ rather than ‘vulnerable’ when discussing AWID in the context of discriminatory practices. By shifting the focus from victim to perpetrator I avoid the common conceptualisation of AWID as vulnerable, passive receivers of abuse, instead acknowledging the active perpetration of abuse by individuals and institutions. This terminology was inspired by anti-racist working groups who self-describe as ‘racialised’ rather than ‘people of colour’, placing the emphasis on those doing the ‘raciliaising’ rather than circumscribing themselves as a static racial entity.
Other controversial terms that crop up within this debate are ‘neurodiverse’ and ‘neurotypical’ to describe those with and without mental health issues or intellectual disabilities. This linguistic binary needs revisiting as it assumes one normal or ‘typical’ functioning brain and other ‘ab-normal’ brains. Circumscribing mental health and disabilities into the same bracket of ‘diverse’ implies an inherent deficiency or illness of the latter which is inaccurate and stigmatising. Hence, I am using the term ‘intellectual disabilities’ (ID) to describe everyone with an innate condition that causes a different functioning of the brain as this term has international acceptance (Foundation for People with Learning Disabilities, 2001, cited in Leicester and Cooke 2002, Scalock et al, 2007).
Literature Review
This section reviews the existing literature around my topic, highlights that which influenced and informed my argument, and the gaps to fill. This thesis references 98 texts, not including law and policy, and of this number 15 are primary sources for my argument due to their relevance to the topic. The texts referenced are from 10 countries, of which the USA and the UK form the majority in number, although not in significance, as over half of the primary texts were sourced from Australasia and Scandinavia. Figure 1 provides a comprehensive overview of the themes that emerged in the texts read, categorised by country, and highlights the main articles used in the ‘Primary Texts’ column (for information on why I have prioritised certain texts see ‘Methodology’). I have noted in the ‘Key Themes’ column, the most commonly recurring topics and have observed that there are some themes that emerge prominently across the international board including ‘sexual facilitation’ (occurs across 4 countries), ‘social stigma’ (3), and ‘peer education’ (3). As these topics draw the most attention in the existing literature, they are key components of my research and discussion.
Figure 1
It is interesting to note that themes emerging from the UK-based literature are largely negative relating to risk (Lee et al., 2017; Ferguson, 2007, Carr, 2010; Myers & Miller, 2007; McCave, et al, 2014), surveillance (Feely, 2016; Watson et al, 1999) and abuse (Sullivan & Knutson, 2000; Carson et al, 2002); whereas in US, Scandinavia, and Australasia themes emerge around solutions such as sexual facilitation, co-production, peer-education. This observation suggests there is a gap in the UK literature around sex-positive approaches to promoting sexual wellbeing, which this thesis aims to plug.
Another observation is how many scholars focus on the intersection of disability, sexuality and more clinical topics including forensic settings (Bartlett et al, 2010), psychologists’ training (Miller & Bryers, 2010), nursing (Earle, 2001), occupational therapy (Block et al, 2012) physical disabilities (Esmail et al, 2007) and mental disorders (Le Gallez et al, 2018). The dearth of literature relating directly to social work indicates how ‘social workers often fall short in fulfilling their emancipatory potential in supporting people with intellectual disabilities in fulfilling their intimate goals’ (Kulick & Rydström, 2015; Kattari & Turner 2017). Holler (2023) provides a harsh critique of professional bias towards AWID, that suggests the reader maintains a strict critical lens on social care. This thesis attempts to shed light on this radically understudied intersection.
A noteworthy contribution to the field is ‘crip theory’ where academics of disability studies critique the able-bodiedness and ‘neurotypicality’ of culture which ‘defines and regiments identity, relationships, social structures, and cultural hierarchies of value’ (Kulick & Rydstrom, 2015). By ‘cripping’ the discourse, theorists bring those with disabilities back into the conversation, and centre their voices and experiences in the dialogue. It is worth noting that crip theory lacks representation from outside the ‘developed’ Western hemisphere, due to funding and culture, and academics acknowledge a lack of insight into the intersections with experiences of the global majority such as racialisation, imperialism, and colonisation.
Many of these scholars’ work can be found in the special themed symposium ‘Cripping Sex Education’ of the Sex Education journal (2020). Hollomotz (2010) offers an empowering reconceptualisation of ‘vulnerability’ affording AWID more agency and autonomy in the sexual wellbeing discussion. Ferrante and Oak (2020) review the literature around sexuality and intellectual disability, identifying barriers to accessing adequate sex education. Gougeon (2009) builds on this, offering an inclusive andragogical approach that advocates creating more informal knowledge streams. Both articles argue for more co-production alongside AWID in the building of sex education curricula. Frawley and O’Shea (2019) evaluate the Sexual Lives and Respectful Relationships programme, a series of co-produced sex education workshops rolled out across Australia, centering the experiences of AWID through peer education. All of these authors challenge conceptions of expertise, placing the ‘professional’ as secondary facilitator and the ‘service-user’ as primary knowledge-holder. This emphasis on co-production was influential throughout my work.
The Disability and Society (2015) journal focused primarily on community solutions. Bahner (2015) interrogates the Swedish model of sexual facilitation as a radical counter to sexual taboo. Bahner argues that the integration of sexuality more explicitly into legislation helps to legitimise non-discriminatory approaches to sexual facilitation. Kulick and Ryodstom (2015) offer a comparative analysis of how sexual facilitation is situated in Denmark and Sweden’s legal and policy frameworks, a cross-cultural study that reveals Denmark as an ‘erotic utopia’. Block et al (2012) considers how sexual facilitation is central to AWID being able to live and love freely, whilst also recognising the ‘complex tangle of barriers which must be collectively navigated’. Hingsburger (2000) provides revolutionary media and technology methods for approaching facilitation and wider sex education, mandating that social workers should utilise modern methods to more inclusively educate AWID. Hamilton (2002) showcases AWID who have persisted against legislative barriers in New Zealand to ‘open up pathways’ to access sexual expression, although in doing so highlights how sexual expression is largely available to those who can express themselves according to normative conceptions of language.
A particularly prolific writer in this field is Lofgren-Martenson who has conducted numerous pieces of primary research into Swedish approaches to disability inclusive sex-education. She surveys people with ID to understand what they consider to be important themes in sex education, identifying the gaps they want plugged ranging from physical mechanics of intimacy, to flirting and building intimate relations (2012). She identifies meeting places as key spaces where sexuality can be explored, noting how the presence of caregivers and professionals, under the guise of protection from risk, pose barriers to autonomous intimate exploration (2004). A limitation of Lofgren-Martenson’s work for this thesis is that she is researching strictly within the Swedish legislative framework, and thus many of her conclusions cannot be directly applied to the UK. Clough (2017) and Herring and Wall (2015) explore the legislative shortcomings of the UK social care context, noting particularly problematic the binaries within the Mental Capacity Act 2004.
From a comprehensive review of the literature it is clear that there is an absence of research from the UK that is engaged positively at the intersection between disability, sexuality and social work. While Scandinavia, Australasia, and to some extent the USA approach this intersection with optimistic, and progressive attitudes, most of the UK literature approaches the sexual lives of AWID as a problem to be solved. This thesis hopes to hypothesise a more hopeful and radical approach to promoting the sexual wellbeing of AWID in the UK.
Methodology
I was motivated to write this dissertation after having a conversation about sex with my older sister, who has Downs syndrome. She appeared nervous to ask questions relating to intimacy but was clearly keen to have answers. I felt awkward and didn’t know how to approach the conversation, worrying she might not be ready for the information, or that it wasn’t appropriate to provide it. This conversation made me reflect on how isolated she is from sex education, and how many social workers must have neglected this area of discussion. I thought more about my own social work practice and how the top priority in my team is risk mitigation which leaves little room for holistic exploration. I identified this as an issue that I would be interested in investigating further.
My first stage, the literature search, consisted of two steps, a search of bibliographic databases using key terms; and identifying and reading relevant work from the bibliographies of selected texts. My initial search string involved three core terms: 'intellectual disability’, ‘social work’, and ‘sex’. Whilst the first two terms were constant in my searches, I expanded the term ‘sex’ based on my learnings to include ‘sexual scripts’, ‘sexual facilitation’, ‘sexual wellbeing’, ‘sexual education’. The databases I used to find articles were primarily TandFonline, Google Scholar, ResearchGate, EBSCO Information Services, and JSTOR, although I was led to other databases by bibliographies of research. I included articles that were published in the last 30 years but discarded anything predating that due to the rapidly evolving disciplines. Only journal articles written in English were included due to linguistic limitations and as such only social care systems within certain areas, largely the UK and Australia were examined, however Scandinavian research was also available in English and offered useful input.
My bibliographic search occurred from September to December 2023 and in order to keep the focus narrow articles were included based on the target population comprising AWID and the main theme relating to sex. I limited the first round of bibliographic research to that which fell within the body of ‘crip theory’ (Bahner, 2015; Bartlett, 2010; Black & Kammes, 2019; Block et al, 2012; Campbell, 2016; Clough, 2017; de Than, 2015; Ferrante & Oak, 2020; Frawley & O’Shea, 2020; Gougeon, 2009; Gill, 2015; Hingsburger, 1995; Lofgren-Martenson, 2012; Shuttleworth & Dune, 2009; Tepper, 2000) because I wanted to take a person-centred approach and focus on experts-by-experience. The main themes which emerged during this round of bibliographic research included ‘sexual facilitation’, ‘peer education’, ‘coproduction’, and ‘stigma’.
The second round of bibliographic research was focused within social work academia to consider the experiences of those facilitating direct work (Ballan, 2008; Carr, 2010; Chin, 2018; Clough, 2017; de Than, 2015; Dunk, 2007; Feely, 2016; Ferguson, 2007; Fish, 2016; Glass, 2016; Herring & Wall, 2015; Hicks, 2008; Holler & Bondorevsky-Heyman, 2023; Hollomotz, 2011; Kattari & Turner, 2017; Lee et al, 2017; Martinez et al, 2011; McCave et al, 2014; Myers & Milner, 2007). These texts were identified within social work journals (i.e. Social Work and Society) or explicitly mentioned social work in the title (i.e. Everyday Sexuality and Social Work). Research from the perspective of other health and social care professionals such as nurses, psychiatrists, and therapists were excluded as outside the scope of this thesis. The main themes which emerged during this round of bibliographic research included ‘surveillance’, ‘abuse’, ‘risk’, ‘legislation’, and ‘caregivers’. The contrast in themes between crip theory and social work academia are interesting to note, with the former focused on solutions and the latter on the problems to overcome. The texts that formed the core of this paper were selected on the basis of a number of elements including ethical considerations of the author(s), use of primary research, and engagement of AWID, and texts from a broad range of rural and urban contexts.
My initial hypothesis was that UK social care would be found to be lacking in sex education generally and what did exist would be exclusive and inaccessible to AWID. I found this to be supported in both the school of crip theory and the body of social work academia. However, I was pleasantly surprised to find that there was a significant contribution of research which acknowledged the issue. I was also pleased to find proposed and trialled solutions, though surprised this was mostly in Australia and Scandinavia. I have integrated findings with solutions throughout my discussion and analysis, before proposing the most realistic recommendations for implementation within UK social care.
Ethics and Values
I considered my own potential bias considering my personal link with Downs syndrome. I have attempted to mitigate this by critically reflecting on my positionality in academic supervisions and peer discussions. I also acknowledge that my own political views could impact my argument, as I am a pro-sexual liberation feminist, with a strong commitment to tackling the taboo around sex in the UK. I have mitigated the impact of my own subjectivity by critically evaluating all arguments and models, using neutral search terms, and engaging with papers from across different geographical contexts.
In terms of my research ethics, I used only research that took an active and informed approach to consent, where participants were given necessary information, in an accessible format, and their desire to be part of the study was regularly checked. I considered ethics when selecting texts, such as the aims of the research, the author(s) own ethical considerations regarding inclusivity, accessibility, and whether emotional support was offered to participants. I prioritised papers published in well recognised journals, subject to peer review, and with extensive bibliographies demonstrating a breadth and depth of research.
Methodological Challenges
I have not conducted primary research and so have prioritised secondary literature where the academics had conducted their own primary research with AWID through surveys, workshops, interviews, etc (Lofgren-Martenson, 2004; 2012; Johnson et al, 2000; Bahner, 2015; Block et al, 2012; Brodwin & Frederic, 2010; Esmail et al, 2010; English et al, 2018; Ferrante & Oak, 2010; Frawley & O’Shea, 2020; Gill, 2015). I could not corroborate or dispute secondary literature with my own findings, so I could not completely centre the voice of AWID. Furthermore, differences between participants’ demographics like age, living conditions, and country of origin were not taken into account due to the heterogeneity of these variables across the assessed articles.
The contribution of AWID within the literature is limited those who are comfortable discussing sex, thus excluding adults from religious backgrounds where sex is taboo, adults who struggle to express themselves, adults whose low socio-economic backgrounds financially preclude them from partaking in research, or adults with health issues or physical disabilities that prohibit them from attending research locations like community groups or education centres. In order to mitigate this, I have prioritised contributions from crip theorists who have co-produced with AWID to ensure their voices are centred.
Discussion and Analysis
This section critically engages with research articles showcasing how social work has attempted to promote the sexual wellbeing of AWID. I evaluate the strengths and limitations of approaches in different countries, draw out key takeaways that could be integrated within the UK context, and consider how they can be understood through the lens of social work theories. I note the tension between the importance of UK risk averse practices to safeguard adults and the limitations of such practices in empowering them as active sexual agents. To frame the analysis I critically engage with the policy and legislative context to demonstrate the statutory duty social workers have to promote the sexual wellbeing of AWID. Key studies that I engage with include Lofgren-Martenson (2012), Clough (2017), Gagnon and Simon (2005), Hingsburger and Haar (1995, 2000), Block (2012) and Johnson (2002).
The Policy and Legislative Framework
Sexual wellbeing is protected under various pieces of national and international legislation and policy. The universal right to ‘physical, mental, and social wellbeing in relation to sexuality’ is affirmed by the WHO (2002) who argue that sexuality is a ‘central aspect of being human’. The Human Rights Act, states that everyone has a right to private life and family life (HRA, 1948, Article 8) which includes intimate and sexual relationships; the European Court of Human Rights protects sexual autonomy (de Than, 2015); and the International Convention of the Rights of Persons with Disabilities states that the government should facilitate disabled people’s ‘full enjoyment’ of their ‘full inclusion and participation in the community’ (2008, Article 19). Paradoxically, some legislation could curtail these rights such as Article 8(2) of the European Convention on Human Rights 1950 (ECHR) which allows public authority to interfere with rights if it is ‘in accordance with the law and is necessary in a democratic society in the interests of public safety [...] for the prevention of disorder or crime, for the protection of health or morals or for the protection of the rights and freedoms of others.’ Hence, there is a tension within legislation that empowers and restricts AWID from realising their meaningful sexual lives.
The Care Act 2014
The principle piece of legislation used by Local Authorities to support adults with social care needs is the Care Act (2014), and within it exists a tension between a commitment to promoting AWIDs personal autonomy [CA2014, s1(2)(d)] including their right to enjoy personal relationships [CA2014, s1(2)(g)], and a commitment to safeguarding them from sexual abuse [CA2014, s42] which underlies a key discussion point in my research.
Section 42 of the CA, concerning safeguarding, mandates that Local Authorities must make enquiries if they have a ‘reasonable cause to suspect that an adult in its area [CA2014, s42(1)] is experiencing, or at risk of experiencing abuse or neglect [CA2014, s42(1)(b)] provided that adult has care needs [CA2014, s42(1)(a)] and as a result of these needs is unable to protect themselves from this abuse or neglect [CA2014, s42(1)(c)]. Shakeshaft (2004) estimates AWID experience sexual abuse three times more frequently than their peers without ID, while Sullivan and Knutson (2000) found the rate to be four times, and Brown-Lavoire et al (2014) found 64% ID females and 50% ID males they interviewed had been sexually abused. A study in 2021 found the rate of abuse of AWID internationally (Tomsa et al, 2021) to be 32.9%, with the UK having the highest prevalence at 34.1%. Sexual abuse has a significant impact on the mental health of these adults, increasing the risk factors for suicide (Wark et al, 2018) and rates of self-harm and self-destructive behaviour three fold (Temple, 2016). These alarming statistics constitute the main reason why UK social care prefers a risk averse approach to sex.
This well founded anxiety is compounded by a distressing history of Serious Case Reviews (SCR) whereby professional negligence led to sexual abuse. A notable example is ‘Harry’, aged 22, who had global development delay and autism and was murdered by two people, one of whom he had been in a relationship with. Professionals did not know, nor interrogate the intimate details of this relationship, preferring instead to help Harry realise his right to an agentive life, and this ‘brought risks, including the risk of abuse from the relationship which became exploitative, coercive and ultimately deadly’ (Mellor, 2016). However, a notable finding from this SCR was that practitioners were not sensitive to the specific needs of the adult, and assumed that simply ‘telling or advising Harry not to contact Karen was likely to be successful’’ (Mellor, 2016), rather than trying to understand his desires and find a way to meet them safely. In fact the SCR found that the coercive nature of domestic abuse was exacerbated by both ‘his strong desire to be in a relationship’ and ‘the concerns of many professionals regarding limitations in his capacity to safeguard himself’ (Mellor, 2016). In other words, Harry’s frustration at professionals’ lack of commitment to supporting his right to build healthy relationships led him to seeking intimacy in a risky, and ultimately fatal context.
This argument that wariness around discussing intimacy could be a risk factor in sexual abuse occuring is corroborated by Hollomotz (2011) and Shakespeare (2014) who repeatedly observe a clear correlation between lack of adequate sexual education and increased incidences of sexual assault. They propose that when AWID are not sufficiently educated about their rights to both accepting and refusing intimacy, they are left ignorant to the complexities of meaningful sexual experiences, and more likely to be targeted for exploitation. Dunk (2007) and McCave (et al, 2014) found that in training related to sex and sexuality, social workers are most likely to learn about sexual trauma and abuse, and least likely to receive training in sexual pleasure or polyamory. Fergus (2007), Carr (2010) and Fish (2016) argue that this becomes a self-fulfilling prophecy, whereby the prioritisation of risk management leads to individuals being branded as ‘vulnerable’, causing local authorities to restrict their opportunities for sexual development. This research suggests that risk-averse approaches, where discussing residents’ intimate lives is not prioritised, could lead to increased incidences of sexual abuse. So perhaps sexual wellbeing should be promoted on a preventative, ongoing basis, as part of the general wellbeing principle.
The wellbeing principle is the core duty of the Care Act, which mandates that every action taken by a Local Authority must give demonstrable regard to the impact upon a person’s general wellbeing [Ca 2014, s.1(1)]. The International Federation of Social Work’s global definition of wellbeing acknowledges ‘the more diverse and sensitive topics’ such as sex (IFSW, 2014z, s2 and s3) and it is also recognised that the promotion of wellbeing is not merely the absence of poor mental health or the presence of stable mental health but concerns ‘the person’s experience of self-actualisation, social integration, expectation and equality of potential - mind, body and environment’ (Local Government Improvement and Development Report, 2010).
Hence, sexual wellbeing is deeply connected to general human wellbeing (Esmail et al, 2007; Myers & Milner, 2007, Owens, 2015), sexual satisfaction (Owens, 2015), and intimacy (Shakespeare, 2000), all of which are important for stable mental health. Sexual pleasure (Tepper, 2000; Sloane, 2014) is directly related to quality of life (Milligan & Neufeldt, 2001). Having a healthy sex life contributes positively to one’s ‘physical and emotional wellbeing’ [CA2014, s1(2)(b)], a posit corroborated by research observing a correlation between poor sexual wellbeing and negative health outcomes (Myers & Milner, 2007; Sloane, 2014). Being empowered to have independent sexual relationships enables a genuine sense of control over day to day life [CA2014, s1(2)(d)], and personal dignity [CA2014, s1(2)(a)].
In exploring sex more casually within important initial assessments, social workers could begin to understand residents’ ‘everyday sexuality’ (Dunk, 2007), such as their desires, fantasies, kinks, insecurities, and triggers but also the way their sexuality interacts with their identity and care needs. Acknowledging sexual wellbeing as an essential component in conversations around general wellbeing, social workers could tackle issues early, preventing them from reaching the safeguarding stage. They could also begin to understand the sexual lives of AWID as dynamic, evolving with knowledge and experimentation, which could help to tackle the personal biases that social workers hold.
The Mental Capacity Act 2005
The other piece of legislation that governs the intimate lives of AWID is the Mental Capacity Act (2005). The MCA provides the framework for assessing capacity and delineates the parameters of appropriate legal intervention. This act governs a multitude of decisions including whether to take medication, where to live, whether to have contact with certain individuals, and whether to have sex. This act is governed by five principles, a presumption of capacity [MCA2005, s1(2)], all practical steps must be taken to support adults before capacity is assessed [MCA2005, s1(3)], unwise decisions are not innately incapacitous decisions [MCA2005, s1(4)], best interest decisions must be made on behalf of those who lack capacity [MCA2005, s1(5)], and finally all least restrictive options must be pursued first [MCA2005, s1(6)]. At the heart of an MCA is the ‘causal nexus’ between ‘impairment of or disturbance in the functioning of the brain’ and the ‘inability to understand, retain, use or weigh up, or communicate their decision’. Importantly, not only do both have to exist, but the former has to cause the latter. This piece of legislation both safeguards and restricts AWID, particularly in relation to their sexual and intimate lives. This section evaluates various strengths and weaknesses of the MCA in relation to promoting the sexual wellbeing of AWID.
A key strength of the MCA for AWID is the ‘unwise decision’ principle. It is important that an individual’s sexual expression is not curtailed on the basis of potential subsequent emotional harm as this is not only a natural consequence of being intimately involved with someone, but an important facet of developing socio-relational skills, and experiencing the entire spectrum of human emotion. Carson and Docherty (2002) maintain that AWID are entitled to this right to exploration which must be accompanied by support to navigate this journey where necessary. Under this principle, AWID are recognised as autonomous agents who have as much right to make unwise decisions as their non-disabled peers.
However, the conceptualisation of capacity as analogous with autonomy is problematic for AWID, as it links autonomy to non-interference from the state. If a person is assessed to have capacity to make an unwise specific decision, that decision is judged as autonomous, and the input from the state is withdrawn under the guise of respecting autonomy. The House of Lords Select Committee (2014, para 3) noted this issue, claiming that the presumption of capacity ‘has been deliberately misappropriated to avoid taking responsibility for a vulnerable adult’. This is echoed in the findings of several SCRs including Steven Hoskin (Flynn 2007; McAteer, 2011) whereby his disengagement with services was deemed to be capacitous and so he was left to his own devices, and no further social care input was offered. If the binary between capacitious/autonomous and incapacitous/dependant was not so stark, Steven may have still been encouraged to consider different types of service, or more efforts may have been made to raise the issue at a later date, or in a different way. This conceptualisation of capacity as analogous to autonomy ignores the myriad institutional barriers he faced, and acted to justify differential legal treatment towards Steven.
Furthermore, Herring and Wall (2015) argue that the ‘complexities of interpersonal relationships which trouble the decision-specific functional test for capacity’. PC & Anor v. City of York Council [2013] EWCA Civ 478 is a good example to showcase this tension. The case questioned whether PC, with mild learning disabilities, had capacity to consent to live with her husband (who she married whilst he was in prison for sexual offences) upon his release (Clough, 2017). In this case she was deemed to have capacity to ‘perform the terms of her marriage contract’ since she had been assessed as capacitious to marry him in the first place. This was at odds with MCA principles mandating that each decision should be taken on its own merit highlighting how the longevity and complexity of intimate and romantic relations is hard to isolate within one specific decision.
Moreover, it is also important to problematize the time-specific element of the MCA in relation to consenting to sex. Decision-making around consent involves ‘complex, separate decisions which interconnect over indefinite periods of time’. Assessing consent cannot practically be time-specific, unless a separate capacity assessment is conducted before every instance of intercourse. In 2007, Mr Justice Mostyn attempted to tackle this issue by setting out a three limbed test for assessing capacity to consent to sex which involves ‘1) an awareness of the act, 2) that there are health risks involved, and 3) that sex between a man and a woman may result in pregnancy’. This focus on health and risk over pleasure and consent is problematic, as this capacity test doesn’t take into consideration whether sex is enjoyable or intimate. It also leaves little room to account for the differences of sexual expression of AWID, not to mention that it is somewhat of a Catch 22 when someone who has not been empowered to explore sex is penalised for not being able to answer questions about its meaning.
It is not the social worker’s role to rewrite legislation but as practitioners we have a responsibility to ensure that the way in which we use it is appropriate and informed by AWID. Practitioners have a responsibility to support AWID to understand the complex architecture of intimacy before assessing their capacity, to ensure that they have a fair chance at conveying this understanding. Practitioners also have a responsibility to challenge capacity assumptions that are made through a discriminatory lens. Ultimately social workers should educate themselves and others to advocate for AWID’s right to a healthy sex life. Having outlined the legislative context, I turn my attention to the barriers that face AWID in realising their rights to meaningful sexual lives, and how social workers can start to overcome them.
Awareness and Advocacy
One of the most prevailing and challenging barriers to the promotion of sexual wellbeing for AWID are the attitudes of non-disabled people. In order to promote sexual wellbeing, social workers must dispel inaccurate narratives by raising awareness of the intersection between disability and sexuality with service-users, caregivers, practitioners, and the general public. Social workers must themselves comprehend and contextualise these myths before they can debunk them and this awareness needs to grow on multiple levels to bring effective change; Brofenbrenner’s (1979) ecological systems theory is helpful to understand this. Brofenbrenner posits that society is made up of multiple levels: the micro- (family/peers/school), meso- (inter-relatedness between micro-exo), exo- (social services/media/politics), macro- (ideologies/culture) and development at each level is impacted by different contextual variances. Social workers must dispel myths of desexualised AWID across all levels of Brofenbrenner’s ecological model in order for sexual wellbeing to be meaningfully promoted.
Societal conceptions regarding this intersection can be understood within the framework of the sexual scripts theory (Gagnon & Simon, 1979; Foucault, 1990). These scholars propose that all sexual behaviour is socially scripted and scripts are drawn from cultural, interpersonal, and intrapsychic factors. Essentially, they argue that sexual behaviour is as much learnt or socially constructed as innate or genetic. The ‘script’ is temporally, spatially, and culturally constructed and can therefore be dynamic and re-informed perpetually through experience. Hick (2008) reconceptualises this claiming that sexuality is regulated through cultural discourses in relationship to privilege, marginalisation, and structural oppression. For Hick there are dominant sexual scripts, such as the naturalisation of penetrative heterosexual intercourse, and it is by these that all sexual acts are measured. Hick’s reconceptualisation adds value by drawing attention to the structural power hierarchies on the exo-level which underpin ‘normal’ and ‘abnormal’. He is limited by his inaccurate assumptions of a cross-cultural commonality, when in fact many cultures such as in Oaxaca Mexico and Andean villages, recognise disability as sacred (Holzer et al, 1999). However, Hick’s basic premise that structural discrimination contributes to the binaric thinking of normal and abnormal scripts is hard to argue with when the majority of sexual scripts for AWID are overwhelmingly negative, prohibitive, and dehumanising.
AWID are scripted as ‘infantilized, asexual infants in need of protection’ (Abu-Habib, 1995; Brodwin & Frederic, 2010, Esmail et al, 2010, Malacrida, 2007) with no capacity to understand or consent to safe sex practices, a belief reinforced through their exclusion from mainstream sex education (Lofgren-Martenson 2004; Santiele Martino 2019, Campbell 2019). Another script suggests they are undesirable partners or unfit to be parents (Olkin, 1999; McRuer & Mollow, 2012) and despite a government ruling in 2001 stating that AWID should be enabled to develop a range of sexual and romantic relationships (Department of Health, 2001), 75% of parents are against their ID offspring marrying and raising children (Aunos & Feldman, 2002). Further scripts position them as sexual deviants or perverts who cannot understand and execute ‘appropriate’ expressions of intimacy (Parchomiuk, 2014; Prillentsky, 2003; Shakespeare et al, 1996, Shuttleworth & Dune, 2009). These scripts demonstrate the ‘double-bind’ that AWID experience as they are subject to a set of oxymoronic stereotypes that circumvent them as both asexual and sterile yet perverted and predatory.
Contrary to these assumptions, crip theorists provide examples where people with disabilities lead ‘healthy, exciting, fulfilled sexual lives and partake in diverse forms of expression’ (Campbell, 2016). In fact, many studies detail how experiences of sexual pleasure can be heightened by disabilities (Guldin, 2000; Kaufman et al, 2007; McRuer 2003; mith-Rainey, 2011) as ‘the array of sexual, erotic acts that disabled people engage in is often based on different conceptions of the erotic body, new sexual temporalities, and a variety of gender and sexed identities’ (Siebers 2012). Literature highlights what Guldin (2000) terms ‘more abstract orgasms’ experienced by AWID including ‘mental, spiritual, and full-body orgasms’ (McRuer & Mollow, 2012; O’Toole, 2000; Shakespeare et al, 1996). A female participant in Shakespeare’s (et al, 1996) study remarked that ‘if you are a sexually-active intellectually disabled person, and comfortable with the sexual side of your life, it is remarkable how dull and unimaginative non-disabled people’s sex lives can appear’.
Some scholars might argue that the durability and reach of these negative scripts could presuppose an element of truth. For example, the high incidences of sexual abuse within the ID community could suggest their inherent ‘vulnerability’ is in line with the medical model of disability whereby a person is understood to be inherently disabled by their condition. The medical model is important, as society does need to recognise the very real limitations of AWID, and diagnoses can provide access to specialised support. However, crip theorists prefer the social model of disability (Oliver, 1983) , arguing that AWID are not inherently disabled by their condition but by the inaccessible world society has created. In this model it is the collective responsibility of society to make room for the needs of people with disabilities, and not the duty of AWID to fit the normative mould society dictates. Social workers can utilise this model to understand that changes need to be made in all systems of society in order for genuine change to occur.
A starting point for this process is making their language accessible when discussing sex with residents. Sex education dialogues tend towards either vague or euphemistic references to ‘the birds and the bees’ or overly medicalised and technical terminology relating to ‘sex organs’, ‘penetration’ etc (Addison, 2006; Ashcraft, 2006; Boehning, 2006; Gordon & Ellingson, 2006), both of which are overly abstract or complicated for residents who may not have the vernacular or cognitive ability to engage. In this way AWID are left with insufficient language to express their sexual needs, boundaries, and desires, positioning them as potential targets for sexual exploitation. Building on scripting theory, Gagnon and Simon (2005) claim that by using such a ‘restrictive script’ social workers limit the ability of AWID to engage in dialogue about sexual wellbeing and ‘script write’, which perpetuates their exclusion leaving them in a state of ‘suspended adolescence’ (Frawley and Wilson, 2016).
This is further compounded by what we could term ‘professional scripts’, i.e. what the social care system mandates is appropriate to discuss. For example, in a placement setting, where the reputation of the employer is at stake, scripts are unlikely to include graphic or explicit guidelines on how to masterbate, even if their graphic and explicit nature is essential to facilitate understanding. This results in protective or restrictive measures taken to ‘protect’ AWID, disempowering them from becoming competent social actors who engage in conversations about disability and sexuality on both personal and structural levels (Hollomotz, 2001). Social workers should take a person- and right- centred approach (BASW, 2018, PCF3&4) to ensure that their language is catered to the needs of each individual they work with.
Social workers do already tackle this issue of inaccessibility of language by using simple exercises in their direct work. One example is the circles curriculum that teaches people with ID about social norms of touching by using six circles of different people in their orbit (family/friends/strangers/partners). However, this exercise falls short as it is rooted in the reductionist notion of the binary between right or wrong (yes to touching in this circle, no to touching in this circle), and thus places far too much emphasis on regulation and expectation. The key drawback of this exercise is that it addresses inaccessibility of language by making the meanings simpler rather than the method of communication more accessible. Gill (2015) argues that instead of simplifying the phenomenon of sex, social workers should use real life examples to facilitate communication. By teaching AWID to listen to their body and to learn how to interpret others’ reactions in real time, social workers can situate sex education in the reality of complexity and nuance, empowering AWID to learn how to navigate this too.
One way this has been trialled is through employing multimedia approaches to support AWID to explore intimacy in their own time and private space using visual aids. Hingsburger (1995) and Hingsburger and Haar (2000) created a masturbation video-modelling curricula including a video which can be viewed privately by the student and a handbook that can be used in the classroom. This allows for the techniques to be situated in public and private settings emphasising differing appropriateness, and is inclusive for the non-verbal AWID. A more radical example of this ‘learn-by-doing’ philosophy is the Outsiders Club’s sex-positive parties for adults. In these environments, strict entry guidelines are employed to prohibit interference and abuse from predators, and within the space professionals bring expertise from different disciplines, all committed to empowering AWID to experience sexual pleasure safely (BASW, 2018, PCF8). In creating and facilitating these recreational spaces, social workers can encourage AWID to explore intimacy in a safe environment.
However, drawing on the ‘social ggrraaacceeesss’ model (Burnham, 2013), these sex-positive methods may not be particularly inclusive approach for many in practice. For instance, the perceived porn-like quality of the media curriculum could alienate caregivers from certain religious or cultural backgrounds, and the sex positive parties would be more difficult to roll out to isolated rural communities. More training needs to be implemented for caregivers before they are able to understand their children’s needs for spaces like this. Both the Outsiders Club and Hingsburger and Haar’s work incorporated the views of caregivers into the project, but these views were likely from a small demographic of society whose liberal views enabled them to engage in this radical approach. For those from different cultural or ethnic backgrounds, caregivers may require significantly more education and accessible resources to enable them to engage with these methods. Thus, it could be argued that before implementing controversial models like these, a more systemic change needs to take place to normalise these practices on a macro- and exo- level.
The macro- and exo- levels are informed by ‘deeply rooted ableism, eugenic practices, and historic desexualisation’ (Campbell, 2016). This has led to widespread institutionalised discrimination with the National Development Team for Inclusion observing ‘deep-seated, negative attitudes’ towards AWID within health and social care settings (Harfleet, 2016). It is important to recognise that healthcare professionals, like the public, ‘gain knowledge about and attitudes towards sex and sexuality from personal experience, sex education, and cultural representations’ (Lee et al, 2017) and as such ‘often perpetuate negative social discourses regarding disability’ (Oliver & Sapey, 2006). Without critically interrogating these scripts on their exo-level, social workers may reinforce unconscious bias about their clients’ sexualities and contribute to oppressive practices reflecting the normative and discriminatory attitudes of society on a macro-level. A key way in which social workers can start to critically engage with these scripts is through anti-oppressive practices.
The core of anti-oppressive practice is to recognise the ‘oppression that exists in our society/space’ and to ‘mitigate the effects of oppression’ in order to ‘eventually equalise the power imbalances that exist between people’ (Aquil et al, 2021). Key ways in which social workers can achieve this is to critically reflect on their own practice in supervisions and with peers, use least restrictive options where possible, and prioritise multi-agency working and person-centred approaches. Social workers should resist the tendency towards increased surveillance under the guise of protection as this often inhibits AWID from fostering relations with their peers (Watson et al, 1999). They should ensure formal advocates are used for AWID in MCA and CA assessments, and advocate for the principles outlined in both. Anti-oppressive practice is not a static policy to be applied but a fluid and evolving mindset, informed by constant critical reflection on social care’s positionality to the resident.
Throughout this section I have explored how social workers can raise awareness of the intersection between disability and sexuality. They can make their approaches to promoting the sexual wellbeing of AWID more accessible, using multimedia, inclusive language, and creating spaces for exploration. They can advocate for AWID as sexual beings with a right to intimate lives, and they can educate caregivers and peers on a micro-level, as well as other professionals on an exo-level to ensure that awareness is raised across the whole of stratified society. However, with the best will in the world, social workers will struggle to raise well-informed awareness across Brofenbrenner’s ecologies without the knowledge of those with lived experience. Raising awareness about the intimate lives and rights of AWID will always be insufficient if not informed and co-produced with them.
Co-Production and Peer Education
Co-production is working collaboratively with residents to generate appropriate, person-centred solutions, and peer education is the sharing of knowledge between peers of a similar background. This section explores how co-production and peer education, used in partnership with various other social work theories, have been successfully implemented to centre the crip theory dictum nothing about us without us.
Lofgren-Martenson (2012) uses coproduction through the format of interviews to develop knowledge about how to improve sexual wellbeing for AWID in Sweden. She conducted qualitative interviews with 16 students aged 16-21 about what they like, and don’t like about Sweden’s Adapted Sex and Relationship Education Curriculum. Participants’ responses include how some of the material is ‘too difficult to understand’ and they would have wanted ‘more knowledge’ about experiencing pleasure and building intimate relationships. Some participants reported that they would have preferred the information be imparted ‘in stages’ across their adult development, and over half of those interviewed claimed they would prefer this information to be provided outside of school. Most participants reported that they found it much easier to understand if they were encouraged to ‘write things down’ or draw their own ‘erotic stories’ to clarify and cement their understanding.
Lofgren-Martenson carefully considers her approach, ensuring her interview questions are ‘probing, non-directive, and flexible’ to allow for ‘wide ranging, subjective experience’ acknowledging that the definition of sex for participants could include flirting, touching, masturbation, petting, and kissing. This validates different experiences of intimacy and also makes the forum accessible to differing sexual maturity levels. By utilising an interview format, she centres how AWID would prefer to be educated about sex, providing a space for them to start to co-produce the curriculum. However her sample size is small and therefore unlikely to be representative. Furthermore, she acknowledges that due to the heterogeneity of varying degrees of ID, it was impossible to make the content of the study wholly accessible, and so her selection criteria was limited to verbal participants. She works with an age-range of 6 years, all from SEN schools, and all providing feedback on the ASRE curriculum which exists only in Sweden and as such the findings are not easily generalisable on a large scale. A key strength of this research is that Lofgren-Martenson is aiming to integrate her findings into the school or extra-curricular curriculum to make it more ID-friendly. There is a clear and sustainable actionable in her work that could improve the sexual wellbeing of AWID which provides a tangible value for the participants she interviews.
Another model which does this is Living Safer Sexual Lives: Respectful Relationships (LSS:RR) (Johnson, 2002), a peer-led sexuality and relationships project that trains AWID as peer educators, and educates workers from disability and community sectors as co-facilitators. This model developed in Australia uses the life story approach, a theory in personality and developmental psychology that construes identity as an internalised and evolving narrative which provides a person’s life with a sense of meaning and coherence, to encourage AWID to tell their stories. Professionals and peer-educators come together to discuss key messages and takeaways from these narratives, and strategise how they would incorporate this information into their practice and social policy on a larger scale. For instance, Johno’s story I am not the only one who is gay sheds light on how peers were using Johno’s sexuality to undermine his sexual experiences, a conclusion which led to further work on understanding the intersections of identity, sexuality, and disability, which was then developed into accessible training materials for social workers to use with LGBTQ+ AWID. By allowing AWID to use their own form and language to create their own stories of sexual expression, this life story approach creates a fluid space where the information most significant to the user arises naturally.
This model also offers tangible value for the participants who provide information to the research providing the opportunity to train and work as peer-educators. They complete a 4-day training programme, and are then qualified to work as a trainer in one of the 8 networks across Australia, provide feedback in annual reviews of the programme, and build professional relationships with the 60 partners of the scheme. This is a good example of Webber’s (2011) connecting people theory, whereby people are empowered with the tools to expand their own network, a more sustainable approach than practitioners creating those connections for them.
This model of co-facilitation is mirrored in the US by the Elevatus Curriculum, developed in 2018. Elevatus is a 22-lesson curriculum that includes a manual with accessible instructions on how to implement lessons, a mandatory co-facilitator with AWID, and places emphasis on becoming a ‘sexual self-advocate’. This means that not only do the lessons support AWID to understand what they want, when to ask for support, and how to access it, but the lessons ensure consistent co-production, and develop leadership skills for the participants. This is in line with the conclusions of Latane’s social impact theory (1981) which states that individuals are more likely to have a strong response to social influence from a group ‘close in kind’ to that individual. By having an AWID co-facilitate, there is an advocate from the group’s background providing accurate, non-shaming, non-stigmatising information to residents and their caregivers. Latante argues that it is important to get information and support from others in a way that validates their ability to make decisions. Elevatus Testimonials attest to the success of this approach, with one self-advocate stating it ‘really helps people learn in a way that they feel comfortable with, and believes in people with disabilities that they can teach sexuality and much more if given the chance.’
UK social care could make more space for this kind of practice. Care Act 2014 assessments could be conducted alongside an expert-by-experience who would be able to provide an informed sounding board for making decisions; Local Authority training around ID could be co-facilitated with experts-by-experience; social workers could see their residents in groups, or create sexual wellbeing forums so that experts-by-experience can feel empowered by peers to share experiences, solutions, and feedback. This would also be in line with Bandura’s social learning theory (1977) which places great emphasis on the importance of learning skills through interactions with others, and observing those skills being modelled for their imitation.
We have discussed awareness raising across different ecologies through various different means, as well as the positive impact of co-production and peer education. However a key limitation regarding co-production is that adults with lived experience cannot contribute to the body of knowledge regarding sex education if they do not have access to knowledge in the first place. One theme that addresses this knowledge gap and that was prominent in Scandinavian research was the somewhat radical idea of sexual facilitation.
Sexual Facilitation
Block et al (2012) define sexual facilitation as ‘assistance with a sexual activity provided to a disabled client by personal assistant or other provider’ which could include ‘positioning the disabled person for masturbation or sex with a partner, helping them to undress, transporting to a partner’s residence, and providing reminders about birth control’ (Block et al, see also Earle, 2001; Hamilton, 2002; Kulick & Rydstrom, 2015; Mona, 2003; Shapiro, 2002; Tepper, 2000; Wilock, 2013). In this system, social workers and carers acknowledge that AWID have a right to sexual gratification, but that they require support to realise this right. As such they are actively involved in supporting them to learn about and enjoy this sexual pleasure safely.
Linking back ‘social ggrraaacceeesss’ model (Burnham, 2013), a potential issue with this method could be the clash of cultural values between professional and resident. For instance, if a Catholic practitioner was to facilitate the sexual activities of a queer resident, this could lead to power imbalances, or risks to their personal dignities and mental health. This could theoretically be solved through a clear matching process between professional and resident, although practical issues such as staffing availability and funding could complicate this. This practice could also lead to a weak societal position of the carer, an already stigmatised role due to historical roots within the gendered or racialised labour market (Guldvik, Christensen & Larsson 2014). Another key factor to consider around sexual facilitation is the risk of sexual abuse. Professionals may not be enthusiastic about the idea of supporting AWID to experience sexual pleasure because of the potential legal and social ramifications of mishandling situations. In fact in the Sexual Offences Act [2003 s.39] any sexual touching by a care worker of a person with a mental disorder is prohibited while that relationship of care continues.
However, the aim of sexual facilitation is to enable professionals to support consenting adults to experience pleasure in a safe space and in doing so aims to reduce the risk of sexual abuse happening in isolated environments. It is worth noting that the rate of sexual abuse in Sweden is 4.2% (Swedish Crime Survey, 2023), a quarter of the UK at 20% (Sexual Abuse Statistics, 2024) and whilst it is impossible to attribute this contrast to sexual facilitation, we can hypothesise that the destigmatised attitudes to sex in Sweden that enable this kind of practice could be a contributing factor. Proponents of sexual facilitation support this hypothesis, stating that Swedish society and social policy “transgresses the view of sex as private and as an autonomous projection of the self’, and reframes sex as something to be spoken openly about, unrelated to discourses of shame or moralism. It could be argued that the line delineating social care ‘appropriateness’, which draws a distinction between sexual facilitation and washing the private parts of a naked client, is relatively arbitrary outside of this stigma.
Thus, further training and awareness raising would be essential if facilitation was to be employed on a larger scale in the UK. In Denmark 400 social workers have been trained in an 18-month long program that trains them to be sexual advisors as part of the 1989 National ‘guidelines about sexuality regardless of Handicap’ (Campbell, 2016). Kulick and Ryodstrom (2015) note that guidelines alone are not sufficient and need to be accompanied by ‘frank conversations, role playing sessions, and other forms of facilitation to make it clear to people that sex is a possible and acceptable topic of conversation’. Shakespeare (2014) echoes these sentiments, arguing that social workers and other professionals should ‘audit their services to ensure that they are not being delivered in ways that undermine the possibilities for intimacy’.
It is clear that just because facilitation works in a Swedish context does not mean that it can be easily or successfully superimposed onto the UK social care system. Colebatch (2009) notes that Swedish social policy is ‘socially constructed by the particular actors within the particular context’, observing how policy emerges from the language and culture of the contemporary. In Swedish society, the ‘concepts of sexuality, disability and professionalism are embedded cognitive ideas with underlying purposes’ (Yanow 2003) that shape collective, normative meaning about what and how policies should materialise in practice (Colebatch 2009). Sexuality is understood as a structural issue, and therefore Sweden recognises that in order for the sexual lives of disabled people to be performed, a wide range of social, economic, and political issues need to be addressed. In other words, sexual facilitation is born out of Sweden’s social context and UK society would need to adapt to employ it effectively. Ultimately, the UK is not ready for such a radical approach to sexual education, and would need a systematic reframing of sex before such policies could be introduced into public services. There is scope for their reintegration into private care practice, but that discussion is outside the scope of this thesis.
Conclusion and Recommendations
It is important to consider generalisability when making recommendations for implementing findings into UK social care. We must think about the durability of recommendations as societal attitudes and structures evolve; the practical implications for implementing recommendations on meso- and macro- scales in different geographies, urban and rural, and with different funding implications; whether we should identify and propose underlying principles or practical methods, and if the latter, who or what team should be responsible for implementing them; and finally how the outcomes would be monitored to ascertain the success of the implementation.
Raising awareness has been identified as the essential first step in changing negative attitudes. Various methods have been analysed including making language more accessible, educating caregivers, media and technology, anti-oppressive practice, and creating spaces for physically exploring intimacy. Social workers should create and disseminate accessible physical resources; educate caregivers and peers about the origins of harmful scripts and the need to rewrite them through support groups, training sessions, direct work, and media. This practice should be through an anti-oppressive lens, remaining flexible as society evolves.
However, raising awareness cannot be done in isolation, and must be co-produced with experts-by-experience in order that this awareness is accurate and representative. Experiences, needs, and desires of AWID cannot be homogenised, thus negating the possibility of co-producing centralised narratives and rolling these out as national policy. Conclusions drawn from studies of sample groups are difficult to universalize, even if co-produced with experts-by-experience, and to govern all contexts with one script would be counterproductive. Instead co-production must be done on the micro- and exo- levels, taking into account the localised, intersectional experiences of adults in different areas. In practice this could be achieved by having co-facilitators with lived experience co-designing training on sexual wellbeing for social care staff, or operating in a consultancy capacity for specific teams.
A key strength of co-production is its durability. As society evolves, and the beliefs and behaviours of its citizens change in counterpart, ongoing co-production is still practical. Social care should always make space for a partnership between the healthcare professional who understands the system, and the expert-by-experience who understands the lived reality. Furthermore, by prioritising funding for roles where AWID are actively participating in the system that supports them, co-production can have a tangible impact for those adults that are providing their expertise. As seen in the successful LSSL:RR programme, empowering and compensating AWID as professionals, builds a sustainable model that can be rolled out nationally without compromising the intersectional needs of its participants.
This thesis has also explored more radical ideas that have developed out of the Scandinavian context, most notably sexual facilitation. As discussed, there are perhaps too many structural and societal barriers to rolling this out in the current UK climate. Therefore, perhaps it is useful to consider the principles that underlie this practice, and how they could inspire the direct work of practitioners on a case by case basis.
The Personal Informs the Political
Social policy emerges out of the social context which is informed by our attitudes, beliefs, and opinions. In line with Brofenbrenner’s (1979) theory about the inter-relatedness of society’s layers, it is arguable that without changing opinions, it will be impossible to amend policy. In Sweden where sexuality is viewed as a collective experience, sexual facilitation is less stigmatised. In a country like the UK where sex is seen as a private phenomenon, often surrounded by discourses of shame, there is no space for these dynamic and radical approaches. In Denmark where social workers receive extensive training to become sexual advisors, professionals are better informed to influence social consciousness and campaign for policy improvements, whereas in the UK where sexual health training is limited to risk mitigation and abuse, professionals are wary of the topic for fear of overstepping boundaries and risking their professional reputation.
A common barrier to adults accessing appropriate sex education in the UK was the attitudes of those around them, caregivers withdrawing them from group sessions, residential homes preventing them from having partners to stay, and social workers hyper vigilant to the risk of sexual abuse. It is clear that until these stigmas are addressed, UK policy cannot be made more inclusive. The role of the social worker then is clear, to educate themselves so they can educate others; to normalise the intersections of disability and sexuality by seeing it as normal themselves; to be aware of the limitations of the law and the historical roots of oppression underpinning social policy, and then stand on the frontline of policy reform and rewrite the script.
Be Radical
There are so many ways in which sexual wellbeing can be promoted inclusively to AWID. Whether social workers use lifestory approaches to enable adults to tell their stories in their own way, media and technology to help them understand the mechanics of masturbation, peer education to show them they are not alone in their anxieties or fantasies, or co-production to give them agency over their sexual narratives, practitioners have a responsibility to ensure that information is provided inclusively. Social workers may not be able to change the law, but they can be radical in the way that the law is applied and be brave in their advocacy of the sexual rights of AWID. In knowing the legislation and policy intimately, social workers can be vigilant about ensuring they work for the adult with ID and not against them. Promoting the sexual wellbeing of an adult with ID should not be a radical act, but while it still feels like one, social workers have a responsibility to be the most radical of all.
Nothing About Us Without Us
Finally, social workers must employ the crip theory dictum nothing about us without us and centre AWID in their direct work and advocacy. Practitioners must listen and learn from residents and use this knowledge to shape their practice going forward. The social worker's role, therefore, is to centre the adult with ID at the core of their practice, find out what each adult wants from their sex life, and find a way to provide that for them.
Future Research Suggestions
There is so much exciting research that is yet to be completed in this area. Scholars could explore how specific ID could be differently catered for, long term projects could be executed monitoring the effects of different sex education approaches over time, and AWID could be collaborated with to the point of co-authorship of research papers. Further studies could also include a deeper analysis of why certain social care approaches work in certain contexts, and how legislative and policy frameworks influence behaviour towards AWID.
Ultimately, it is essential that AWID are educated to love their body and understand the pleasure and opportunities it can provide. In understanding and learning to love one’s body, one can fight against the neoliberal agenda that the human form comprises various components to be fixed, and instead embrace the notion that the body is something to be nurtured and accepted. This will help AWID truly understand that they are enough.
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Websites
https://bra.se/download/18.126e8d3a18afe99a9721db1/1696838115678/2023_Swedish_Crime_Survey_2023.pdf - Swedish Crime Survey 2023
https://criminalinjurieshelpline.co.uk/blog/sexual-abuse-data-stats/#:~:text=According%20to%20statistic%20reports%20in,11%20sexual%20offences%20every%20hour. - UK Sexual Abuse Statistics, 2023
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