Introduction: Independent Living and Sexuality

The Convention on the Rights of Persons with Disabilities (CRPD) is a legal standard in Spain since its ratification in 2008. Under Article 19, ‘Living independently and being included in the community’, states must guarantee people with disabilities equal access to housing and residential facilities to empower them to live independently and ‘prevent isolation or segregation from the community’. This legislation has resulted in official independent living (IL) policies in Spain, including personal assistance schemes.

IL emerged from the disability rights movement in the 1960s, which advocated that people with disabilities should live in the community rather than institutions, thus achieving autonomy, self-determination, and control over their housing and support services, while ‘in a wider and more holistic sense’ enjoying ‘equal rights and opportunities to non-disabled people in all aspects of life’ (Graby, 2018, p. 32), including sexuality (Bahner, 2020). The IL philosophy—and personal assistance specifically—is closely related to the social model of disability, itself a response to disabled people’s critique of the medical establishment, which instead of concentrating on structural change chose to conceptualise disability as a personal tragedy. Societal barriers encompass physical inaccessibility, prejudice, and negative attitudes toward disabled people, including the commonly held view that they are non-sexual or have ‘unnatural’ sexual urges and practices (Nario-Redmond, 2020).

It is not the IL philosophy to equate independence with absolute self-reliance; rather, it is ‘having the freedom of choice and control over one’s own life and lifestyle’ (ENIL, 2023). The concept of independence should be understood against the historical background of disabled people struggling against medical and professional domination (Graby, 2018). Using personal assistance to meet one’s personal needs and desires is a way of claiming agency as the authority on one’s own life, rather than an object of paternalistic ‘care’. This includes privacy, physical integrity, and being seen as a gendered being, and, if so desired, being supported to explore and express one’s sexuality—all of which are protected under CRPD Articles 17, 22, 23, and 25.

The implementation of personal assistance services in Spain is still in its infancy, hampered by a lack of resources and services, though there are some local projects that have shown success, as well as more traditional institutional arrangements (Verdugo & Jenaro, 2019). The Spanish model of services and benefits is still largely based on institutional, individual, and medical approaches, meaning that both in policy and in practice it is significantly more difficult to access an independent life (Mozo González & Lucena Fernández, 2021), including a sex life.

The disability activist Adolf Ratzka argues the meaning of sexuality for disabled people who require daily support is closely related to the general unavailability of such support:

Sexuality is the result of the whole person’s life situation. Without the prerequisites for self-esteem and personal independence there can be no sound sexuality … for many of us who have extensive disabilities our sexual liberation does not so much depend on sex counselling or mechanical sex aids but on the availability of tax-funded personal assistance services which empower us to take control over our own lives. (Ratzka, 1998, n.p.)

Although the European IL movement has been slow to respond to Ratzka, there have been local examples of policies on sexuality. In the 2010s, Spanish IL campaigners prioritised sexuality in the hopes of changing the public perception of disabled people as passive, undesirable objects of care. For the activist Centeno (2014), the goal is to politicise disability by talking about sexuality. Allying with queer activism was fundamental to this brand of advocacy, leading to a range of projects that politicise disabled sexuality by positioning it as dissident (García-Santesmases et al., 2017).

Within the broader IL campaign for sexual rights, there are also calls for more specialised sexual services and support, of which ‘sexual assistance’ is the most well-known. In Spain, however, sexual assistance has yet to be defined. Despite considerable public debate (featuring in the Spanish Parliament and the mainstream media), few organisations provide services, and those that do are small. García-Santesmases and Branco Ferreira (2016) find they offer vastly different services under the umbrella of ‘sexual assistance’, from a limited masturbation service to a sort of ‘special prostitution’. To do so, they capitalise on a legal ambiguity, for while the government is pushing for abolition (Proposición de Ley, 2022), sex work is not regulated and is neither legal nor illegal in Spain.

This article is an ethnographic study of CityLiving, a Spanish rehabilitation facility for people who have recently sustained a spinal cord injury, traumatic brain injury, or similar. CityLiving was chosen because it claims to champion IL, the focus of the larger project of which this study is part. In this article, the focus is on sexuality. The popularisation of IL and the disability movements’ criticism of institutionalisation has led many institutions in Spain to rebrand their services without substantially changing their practices. While the mismatch between branding and actual practice has been studied in terms of personal assistance (Rodríguez-Giralt et al., in press-2024), it is worth exploring this specifically in terms of sexuality. There are a few international examples of how residential facilities deal with sexuality, but they have focused on services for people with intellectual disabilities (for example, Bahner et al., 2024; Altermark, 2017; Feely, 2016; Kulick & Rydström, 2015) or older people (Frankowski & Clark, 2009). In the research on sexuality, physical disability, and care infrastructure the focus is on medical interventions to ‘normalise’ bodily ‘lack’ in relation to sexual function, and not so much on the socio-sexual parts of rehabilitation (García-Santesmases, 2023). There is a gap regarding physical disability and sexuality from a critical perspective.

This paper aims to address this gap by exploring the following research questions: (1) How are sexuality, intimacy, and privacy governed in the studied facility by organisational policy, management, and direct support staff? (2) How does this governance influence disabled people’ sexual and affective lives? (3) What strategies do they undertake to respond to the institutional government of their sexuality? Our aim is to offer a multidimensional view of sexuality by drawing on several sources of data from the facility, because we believe that the sexuality of disabled people relying on support in their daily lives cannot be understood from merely an individual perspective (see Bahner, 2020; Kulick & Rydström, 2015; Liddiard, 2018). Challenges and opportunities for sexual expression in the lives of many disabled people, and especially those who rely on support in their daily lives, are influenced by multiple factors, which we will now discuss from a theoretical point of view.

Theoretical Framework: Sexuality, Disability, and Power

Inspired by Tremain’s (2015) theorisation of Foucault, governmentality, and critical disability theory, we have concentrated on the discursive processes of ascribing the category of impairment with an embodiment of ‘natural’ deficit, justifying the system’s regulatory practices that are self-explanatory (for staff) and internalised (by service users). While Tremain limits herself to theory, we also draw on more empirical approaches such as Altermark (2017), who uses a Foucauldian analysis to discuss modern-day residential living for people with intellectual disabilities. Finding it to be ‘post-institutional’, he argues that new forms of governmentality and biopolitics are gaining ground under the banner of ‘independence’, ‘citizenship’, and ‘inclusion’. In post-institutional settings, the processes of classification and medicalisation serve to hide the political nature of disability (see also Kafer, 2013).

In a more specific example, Martin Sullivan draws on Tremain to analyse data from a Canadian rehabilitation unit for paraplegics. He finds ‘medical power is deployed to produce a certain type of body and a certain type of subject’, namely, ‘the docile paraplegic body-subject’ (2015, p. 41). The practices observed in the rehabilitation unit are impersonal and seemingly arbitrary, but nonetheless have the air of a factory production line, because not only are staff taught to ignore individuality, but also service users internalise the correct forms of self-care and bodily maintenance required of ideal ‘rehabilitated paras’. Sullivan did his research in the 1970s and 1980s, but more recent studies identify similar processes. García-Santesmases and Sanmiquel-Molinero (2022) single out affective disablism in their study of the discursive, disciplining forces at work in spinal cord injury rehabilitation, drawing on Goodley (2014) and Reeve (2012) to explain ‘the set of exercises of power that restrict the possible activities and identities of the disabled body-subject, which also has an impact on their emotional well-being’ (García-Santesmases & Sanmiquel-Molinero, 2022, p. 380). Internalised oppression, or the process of governmentality to borrow from Foucault, is constantly reproduced both discursively and practically in the hospital—or as one of their interviewees said, in their ‘micro world’ (p. 385). The disabled subject was an object of care in a total institution, which was both spatially and morally distant from the outside world and the norms and values once considered normal for its inhabitants. Staff, by imposing the impaired subject position on interviewees, created a sense of safety in a routinised, regulated environment, while simultaneously instilling a fear of life after hospital, compounding the ‘docile paraplegic body-subjects’.

Organisational and profession-oriented analytical tools are needed to complement these perspectives. CityLiving is not just any organisation; it is a human service organisation (HSO). People are the raw material of an HSO, which sets out to change and shape clients’ personal attributes in what amounts to ‘people processing’ (Hasenfeld, 2010a; Lipsky, 2010). Being ‘processed’ by an HSO requires service users to conform to the HSO’s expectations as to their social worth, amenability to change, and identity as an object or subject. Such expectations take the form of ‘moral work’, where ‘every action taken on behalf of clients not only represents some form of concrete service … but also confers a moral judgement about their social worth, the causation of their predicament, and the desired outcome’ (Hasenfeld, 2010b, p. 98). Moral work is ‘highly contextualised, reflecting the particular cultural, political, and economic exigencies of the local community in which such work takes place’ (p. 98). While this comes naturally to professionals, being embedded in the organisational routines and legitimated by official policy, for service users it can mean internalising moral devaluations if they do not conform to the ideal. Staff can become ‘moral agents’, as their personal beliefs and experiences influence their service delivery (Lipsky, 2010). Informal, sometimes invisible organisational practices may thus affect access to services, independent of formal rules, since they seldom account for every possible situation that arises in the service environment (Brodkin, 2010). The broader, political context of an HSO, for example how people with disabilities and their sexuality are viewed in a certain society, therefore needs to be considered when analysing moral work.

The discretionary nature of work in an HSO means it falls to staff to decide how to execute the services in the (many) instances which are not precisely regulated (Lipsky, 2010) and amount to most of the personalised care work such as disability services (Bahner, 2013; Feely, 2016). CityLiving’s service users, who require continuous support and may be traumatised by the injuries that led them to become ‘patients’ for the first time in their lives (García-Santesmases & Sanmiquel-Molinero, 2022) can be especially susceptible to personal devaluation, making it difficult to engage in protest or collective mobilisation in a service environment (Hasenfeld, 2010a). Disability studies, with its anti-oppressive political agenda that advocates for disability rights and IL, associates vulnerability to internalised ableism with being unaware of one’s potential position as a rights holder and agentic subject—which is not surprising considering how pervasive ableism is (Campbell, 2009; Oliver, 1990).

Sexuality is considered a private matter, complicating the issue, even though ‘The distinction between public and private that appears to exempt the personal aspects of sex from the disciplinary gaze of legal and social policy is an illusion’ (Shildrick, 2007, p. 62). This is a pressing issue for disabled people, who are often considered to have no sexual desires or attractiveness, and may need more empowerment to develop sexual subjectivity and agency (Liddiard, 2018). When disability services neither provide sexual support nor acknowledge the importance of sexuality, asexuality fills the gap as the primary disability identity (Bahner, 2020; Kulick & Rydström, 2015). García-Santesmases and Sanmiquel-Molinero (2022) address the ‘feminisation of the object of care’ during the hospitalisation of people with spinal cord injuries, resulting in the infantilisation, desexualisation, and degenderisation of male patients. Stripped of gender, sexuality, adulthood, and subjectivity, patients are dehumanised. ‘Less than human’ objects are easier to ‘govern’ (Shildrick, 2007), since they may find it more difficult to claim their ‘human rights’.

We too analyse instances of agency and strategies for reclaiming desired (sexual) identities in the context of CityLiving. There is no power without resistance, as Foucault would have it. If the conduct of disabled people must be governed, it is precisely because they have agency in the first place (Tremain, 2015). As Liddiard argues,

the very idea of power as polymorphous makes space for thinking about the ways in which disability and sexuality are contoured by (dis/ableist) social and political processes, but more importantly the ways in which disabled people might enact, claim or assert sexual agency when negotiating a sexual self and identity. (Liddiard, 2018, p. 29)

In sum, a Foucault-inspired critical disability lens allows us to critically examine exercises of power and resistance regarding sexuality and disability in residential facilities, while the HSO framework helps us focus on the ‘moral work’ that the exercise of power entails on the part of the institution, and the ways in which independent living relates to sexuality.

Method

The Context: City Living Facility

CityLiving (CL) is a project associated with an internationally renowned institute in the treatment of spinal cord injuries, acquired brain damage, and other neurological impairments. The institute has different social projects that go beyond medical treatment and the provision of hospital services. One of them is CL, an initiative for disabled people who, mainly after being hospitalised because of an accident, are looking for an alternative to institutionalisation (i.e., a traditional residence) and familial care. CL started in 2019 and its goal is ‘to promote the autonomy and quality of life of people with disabilities who want to develop an independent life project in an active, inclusive way, and with their own lifestyle’ (CL website).

CL’s objective is to train disabled people, for a maximum period of two years, to learn the personal and social skills to ‘go back to normal life’. It is mainly aimed at young people with an SCI, but they accept people with brain damage or other neurological impairments if they are ‘sufficiently autonomous’ or live with a family member. CL also welcomes people with physical impairments who want to do a short period of intense rehabilitation, to live temporarily in the facility, but they are not considered as part of the ‘independent living profile’.

The facility offers a 24-h attendant service. The staff works to meet the specific needs of the users and carry out a wide range of tasks, such as hygiene, dressing, transfers, and feeding. Attendants are trained to ‘promote the development of personal autonomy’ and consider their work significantly different from the residential sector (where most of them worked before). They should attend ‘whatever the person needs’—but only if it is something specific and limited in time (no more than 20 min). If the user needs longer assistance, they should hire a personal assistant.

CL is an accessible facility in a centric neighbour of a big city in Spain. The facility has three floors with several small individual apartments. It has a receptionist and a 24-h security guard. The facility is adjacent to a clinic where advanced physical and neurological rehabilitation therapies are offered for an additional fee. CL also has a cafeteria with a terrace on the ground level that is open to the public as part of the project’s aim ‘to promote the participation of their residents in society in a community setting’ (CL website). Visitors are registered at the entrance and cannot stay for the night unless users tell the staff beforehand and pay an extra charge.

The Study

The present study is part of a larger research project exploring independent living in different communities using focused ethnography (Knoblauch, 2005). According to Knoblauch (2005), focused ethnographies differ from traditional ethnographies in that fieldwork is intensive rather than extended over time; fieldwork data is recorded via technological means (such as recorders) as opposed to a ‘diary’; and data is collectively analysed before ‘exiting the field’). Regarding CityLiving, the fieldwork was conducted by the first author between September 2021 and February 2022.

Recruitment and Informants

Data collection started with the interviews provided by the institution, whereby the managers contacted a few care staff and users. These interviews were conducted in the places preferred by the interviewees; it could be a common area such as the cafeteria, or a private one such as the staff room or the users’ apartment. The first author felt that this was a too small sample, but the managers explained that users were ‘reluctant to participate’ in general. To include more participants, the researcher started a snowball process: after each interview, with both staff and patients, participants were asked for suggestions on more potential interviewees. They were offered the possibility to be contacted by her, to contact her themselves or to explain the research in person. After these first experiences and as she started to be a familiar presence in the facility during the ethnographic fieldwork, both staff and users became more eager to participate. The researcher emphasised that ‘she did not work for or was otherwise paid by the hospital—but by the university’, meaning that she was ‘an independent researcher who could do an objective analysis and help to improve things’. This approach was successful and led to a richer, more diverse sample, since the initial one was more related to the institution and comprised mainly ‘happy workers’ and ‘satisfied users’. The final sample consisted of the following participants, and all of them were anonymised.

  • All of the service users at the time of the study (12 people), who were classified as ‘independent living profile’. They were mainly young men with an SCI (five participants). There were also three young men with brain damage (two of them living with their mothers and the other one with his mother visiting him regularly) and a young man with a neurodegenerative disease. Finally, there were two women (one young and one middle-age), both of them had a neurodegenerative disease and lived alone.

  • Three mothers involved in the daily care of their adult children, as mentioned above.

  • All attendants (12 direct care staff) employed at the time: three men and nine women.

  • All managers of the residential facility and of the adjacent clinic (7 participants): the current director, the former director, the administrative coordinator, the head of rehabilitation and physiotherapy, the head of human resources, the head of psychology and neurology, and the coordinator of the social area.

Data Collection Methodology

The participant observations that took place during the first months focused mainly on the common areas, such as the cafeteria and the terrace. Taking advantage of the interview schedules, the researcher arrived before and stayed after the interviews to do observations. In total, fieldwork was conducted at least 3 days a week during the 6-month period. At the beginning of the fieldwork, it was a nonparticipant observation: observing and taking notes of the different interactions going on in the facility without interacting. After a few weeks, the researcher started to be recognised by both staff, users, and their families, whereby the participant observation started. In the common areas, it was based on conversations, at the beginning just small talk, and after a while, longer conversations with some users. Some days, the researcher also had coffee or lunch with some of them who used the cafeteria more frequently. A few times she had lunch and hung out with them as a small group met in one user’s apartment. At the end of the fieldwork, the users had the joke that the researcher ‘slept there’ since she was already there when they went into the common areas in the morning and still there when they went back to their apartments in the evening.

Initially, the interviews relied on an interview guide which was common for the larger project and based on the following themes: practices and strategies, care and community, and finally, spatial and material elements of the facility. After a while, it included more questions that emerged as key points based on the observations and previews interviews. Also, the interview guide was adapted to each sample profile as well as to individual preferences and characteristics according to a semi-structured approach. The interviews were audio recorded and fieldwork notes were taken by the researcher. They were subsequently transcribed and anonymised by a research assistant.

Analytical Approach

The analytical process started already with the fieldwork diary. It was based on a flexible guide which indicates date, timing, and participants and was divided by ‘objective description’ (as neutral as possible about the materiality, spaces, interactions, and conversations) and ‘reflection’ (an exercise of reflexivity about the researcher position, the production of knowledge, or the power dynamics implied in the fieldwork). This process, together with the data obtained during the interviews, ended up forming what some authors have defined as thick description (Geertz, 2000). Thus, it was not a purely descriptive process but rather a reflective relationship on the interactions and meanings that have emerged in the field. In the second step, analysis began during transcription by the research assistant who also made the first thematic categorisation. The principal and third author reviewed and wrote comments on all the transcriptions and categorisations. Since issues around sexuality, privacy, and gender were not the focus of the larger project, this theme gradually evolved during the fieldwork, and subsequently, forming the idea for a paper with the second author. The first author selected parts of the data for discussions with the second author, eventually forming the sub themes for this paper. They analysed the data together using the theoretical perspectives introduced above.

Ethical Considerations

The project was ethically approved by the university of the researchers. All the participants were informed about the objectives of the projects and all of them who were interviewed signed an informed consent. All the information was anonymised and the fieldwork notes, due to the sensible nature of its information, was not shared with the rest of the researchers.

Results

Unlike personal assistance services, which for disabled activists and the IL philosophy has a human rights framework, CityLiving is framed as a medical facility. As explained by the current director, who was previously the hospital matron, ‘here, I manage beds’. Assistance is meant to be provided in an ‘sterile’ way, and neither the users’ nor the staff members’ gender identity or sexual orientation should matter. Despite this official discourse, gender and sexuality arise constantly—sometimes as a risk—in the daily practice of care wherever professionals, service users, and relatives interact. Our findings fall into three themes: the (im)possibility of privacy and intimacy, gendered and degendered assistance, and the ghost of sexual assistance.

The (Im)possibility of Privacy and Intimacy

The CityLiving staff stuck to the institutional mantra, ‘They are in their own homes; of course, they have privacy’; however, ‘privacy’ had contradictory meanings. It was not only evident that the front desk workers monitored both service users and visitors, but the staff also kept tabs on service users. This included their daily mood and anything that might seem ‘off’ to staff:

We write everything down, from urine leakage or a bowel movement leakage to ‘this person is a little bit out of sorts, we see that this person is a little bit anxious, he has shown these attitudes that are not part of his character’. A little bit of everything. (Saul, Staff)

The information shared by professionals related not only to individual traits (daily mood or hygiene), but also to social interactions and personal relationships. Several staff members said gossip about (potential) sexual interactions was rife: ‘there are some romantic stories between users’, ‘There are some users who have tried something with a professional’. Ainhoa (Staff) reported a specific situation where a user received several visits from ‘boys’:

When boys came up to see a user, the security staff would call up to staff to comment on it; they would say, for example, ‘It’s a new one!’ (…) I think that was partially because they were boys. But if it had been a user with a lot of girls, they would have also said, ‘Look, now another one is coming!’ (Ainhoa, Staff)

In another interview with a member of staff, we can also see how this dynamic played out:

Interviewer: And on the issue of privacy, to what extent do you think the privacy of the users is preserved, and that they can have a private life for their own things?

Ricardo: Well, they can do whatever they want. In fact, there are some people who have had visitors… Joyful life people [Spanish euphemism for prostitutes]. There was a guy that was… He liked men. (…) He drank, of course. One night he hired the services of up to three guys, three muscular guys: a Brazilian, a Venezuelan, even an African. And I said fuck, this guy doesn’t rest. And of course, we found out that there was a pill that he was taking that gave him a tremendous sexual appetite. (…). This guy could do whatever he wanted, in the middle of a pandemic, and we couldn’t say no to him. It was his privacy.

A service user’s personal life could be discussed and judged. CityLiving was a ‘panopticon’, where information circulated between professionals (attendants, security guards, and receptionists), while users never knew whether their conversations with staff were ‘private’ or were being shared. For information was exchanged between staff members, even when they came by it ‘by mistake’:

Ricardo: In the case of Vicente [service user]. When he got this girlfriend, we were very close. For example, Vicente told me ‘I don’t know if I can ejaculate or not. I want to have sex’. (…) He shared that confidence with us. He said, ‘come in whenever you want’ [into his apartment]. And of course, my colleagues went in like that. And one day, the girlfriend was already there, and they found them in a certain [sexual] position… And my colleagues told me right away. (…) But it never happened with another user. We are really discreet. We knock and wait for an answer; if they don’t answer then we don’t enter. They do have their privacy.

Interviewer: Of course. But what happens is that then people know about it. I mean this guy who was hiring guys. He could do it, but everybody knew about it.

Ricardo: Yeah, in fact, there’s another one that has hired the services of a girl sometimes, who by the way was recognised when she was leaving the apartment by another user who also had hired her.

Interviewer: The same girl.

Ricardo: Sometimes. Yes, you can see that there is a specialised girl’s place for this type of person [with a disability]. I didn’t know that. (…) I found out from one of the women who left that there was a place for that, that they are also prepared for a lot of things. And I look at that, well, well it’s good, it’s very good. (…) Yes, yes, they have total privacy. And we preserve it too. Except for the exception of those two girls who were like that and that’s all that happened. And it was because of the trust he put in us. He said we could come in whenever we wanted to.

Evidently, the staff did not associate sharing personal information with putting service users’ privacy at risk. They thought they were preserving users’ privacy and did not seem to see it as contradictory when they told their colleagues ‘right away’ about a service user’s sexual relations.

Service users, though, were aware and concerned about their lack of privacy, both on their own account and because their relatives or friends complained or felt uncomfortable.

Marlon explained to me that on one occasion a female friend came to visit him, and the receptionist stopped her to register her name and asked, ‘Are you his assistant?’ (meaning if she works for him as a personal assistant). She didn’t understand the question and was confused. Marlon felt embarrassed to explain to her what ‘assistant’ means. It shows how the receptionist, and in a broader sense the facility, assumed the users’ expected relationship with other people is based on assistance or care, making it anecdotal and remarkable when a relationship exceeds this framework. (Fieldwork notes, Marlon’s apartment, January 2022)

The problem was not users being registered, but how it framed them and their potential relationships in a medicalised way. Marlon was relegated to ‘disabled service user’ rather than being considered an autonomous subject.

Another user, Nico, described an open conflict about security. He arrived late at night with a female friend. The security guard asked for her identity card, which was more than required (visitors only need to provide their names and where they were going, and only if they arrived alone, never with a user). Nico complained but the guard stood his ground, even when Nico threatened to sue him. The friend had to give the guard her personal data. The next day, Nico reported the incident to the manager, who assured him it would not happen again, and that it was the guard’s fault for exceeding his responsibilities. Nico was certain CityLiving considered him ‘problematic’ because he complained ‘too much’, and most of his complaints ‘end in a box’. When the first author asked another manager about the incident, she asked to ‘turn off the recorder’ to insinuate the woman was registered because ‘she looked like a sex worker’. The professionals’ ‘common sense’ (ideas, prejudices, and stereotypes) determined their performance, and thus, the user’s daily lives, interactions, and possibilities. This was an example of how CityLiving engaged in ‘moral work’. When Nico complained, he worried about abandoning his role as a compliant ‘good user’.

There were a variety of strategies among service users to deal with being controlled. One of the oldest service users, a middle-aged man, had a girlfriend who lived in another city. When she visited, they usually went to a hotel to avoid being gossiped about and spare her any embarrassment:

But what intimacy could you have here if someone comes to see you and they say ‘What’s your name? Bring your ID card’. Don’t fuck with me. Come on, if I see girlfriends we meet outside this place, I wouldn’t think of bringing them here. It’s a shame, for fuck’s sake. Because you can meet someone who says, ‘Who do you think you are? Do I now have to bring my ID to see you? Go on, go fuck yourself [directed at staff]. (…) This is precisely anti-independence. (Raúl, User)Footnote 1

Raúl’s response to being monitored was direct and angry. However, he did not take action against CityLiving, thinking it better to remain silent for other reasons. For example, he had already exceeded the 2-year time limit there, so he wanted to avoid bringing attention to himself.

(De)gendered Assistance

CityLiving staff internalised the institutional discourse of their neutrality, repeating tropes such as ‘A professional is a professional’ or ‘We all do our job the same way’, so their gender ‘should not matter’; however, sometimes they had to deal with service users’ preferences for female assistants. One male user did not want a suppository to be inserted by a male member of staff, for example, but had to accept it because CityLiving ‘does not allow you to choose the person who assists you’. The same happened to a female user. When she moved in, she said she was uncomfortable having a man help her put on a sanitary pad. She asked for a female member of staff, but only a man was available:

I asked her ‘What do you want?’ and she told me ‘Well… I need to put in the sanitary pad…. And I answered, ‘I can put this on you’. And she said, ‘But do you know how to do it?’ And I said ‘Of course, you don’t need an engineering degree to put on a pad (laugh), which also have these wings that are easy to put on’. Then she said ‘Ah, ok, thanks’ and everything worked out well. (Saul, Staff)

She learned that ‘staff gender should not matter’ and she had to get used to not caring about it.

For intimate things, related to the bathroom, I prefer a girl. But hey, later I had to get used to the fact that nothing happens, that they are professionals, that they can both do the same. (Alicia, User)

Yet there was a paradox in the staff discourse that, again, resonated with ‘moral work’: disabled users should not care about staff gender (caring would mean questioning staff’s professionalism), but staff members did sometimes care about the user’s gender and sexuality. Saul noted a certain tension about the male body, perhaps because he was gay and users knew it, so he was concerned it would make them feel uncomfortable:

At first when you meet a person it’s like… let’s see if I touch him here, he could think maybe… But well, it is not a big problem, they will think that we will have seen everything. (Saul, Staff)

The staff avoided reporting their own potential discomfort about user’s gendered bodies in order to preserve their professionalism. However, these situations were often reported when talking about ‘other staff members’. For example, hygiene could be a source of awkwardness for both staff and service users. It was common for male users to have an erection when bathing, causing uncomfortable feelings among staff, especially when the situation involved a young service user and a young member of staff. How they dealt with it was largely based on intuition, experience, and ‘common sense’, and ran from complete silence to cracking jokes about it to ‘break the ice’, as Nora (Staff) explained:

Nora: You have to change the subject or move aside or play dumb. So that the person doesn’t feel uncomfortable. Because when I get nervous, I’m often very clumsy, like, I drop everything, or I ring the doorbell without wanting to and say oh my God! And of course, I must avoid getting nervous. Other colleagues make jokes, but it’s not super good that they always make jokes and so on, so for example when a service user says, ‘you smell good’ and so on, [I don’t react], but the others get nervous. (...) Because you stand so close to them… All the time, you get close like that, but it is okay. I mean, it doesn’t bother me, and it bothers them even less. Otherwise, they wouldn’t joke.

Staff differed on which strategy was appropriate, which they negotiated among themselves. However, there were also examples of consensual interactions between service users and staff, as well as staff members talking about the others’ way of dealing with users in gendered and even eroticised ways. There was gossip about the attraction between Sharon (Staff) and Marlon (User): they were the same age, had similar interests, and were attractive in a normative way. Other staff members noted in interviews that Marlon was interested in her—‘he asked for her social media’—and Sharon found him attractive too. However, Luz (Staff) said in her interview that Sharon had told her that ‘with [Marlon], I would have had something before, if I had met him before the accident’. Sharon did not mention it in her interview, while in Marlon’s words, noted during the fieldwork a year after their ‘flirt’, Sharon was ‘very attractive’, but he was ‘not flirting’ and was merely interested in her social media because she was also a dance teacher and he wanted to follow her dance videos. Whether they were flirting or not, the example shows how gossip created bonds between staff members while othering service users as ‘undesirable’ in their current state.

Finally, there were several examples of service users talking back to members of staff, perhaps to exercise agency in a rigid institutional framework. During the fieldwork, some users had conflicts with Sharon, who ultimately resigned. They considered her ‘too rigid’ and ‘bossy’. They started to call her ‘the hell dancer’ behind her back and tried different strategies to upset her:

Nico said, laughing, that he greets her saying ‘Hello beautiful’ to annoy her because ‘He doesn’t care about anything’. Marlon laughed and answered that he wouldn’t call her pretty to avoid giving her a reason to be arrogant. He explained that last week she put him in bed so ‘he went to bed with Sharon’. I make fun of him, saying ‘His fantasy was finally achieved’. Both laughed and Marlon said that I was ‘too mean’. (Fieldwork notes, Marlon’s apartment, March 2022).

Sharon was not the only one with a nickname. Her colleague from the morning shift, a middle-aged woman who was not found attractive by users, was known by another gendered moniker, ‘the big ass woman’. CityLiving was a typical HSO in the sense that the majority of staff were women, working with primarily male service users. Spain’s societal gender dynamics were reproduced in this context, providing an opportunity for users to ‘talk back’ as a way of showing agency in an otherwise controlled environment. Other staff members who were more liked did not receive pejorative nicknames, but they were referred to as ‘mum’ if they acted in a ‘caring way’. Whether in a positive or negative sense, in relation to physical appearance or their relationship to care, all caregivers were named in a gendered way.

The Ghost of Sexual Assistance

The institutional view on service users’ sexuality was that it was a private, individual matter that CityLiving should not interfere with, as illustrated by Eloísa, a former director:

Interviewer: Did you have any idea of approaching the topic of sexuality or did it seem like an important topic in any way?

Eloísa: I haven’t really addressed it. It’s a topic that I keep a little bit to one side.

Even though sexuality was not considered an important issue, the ‘ghost’ of sexual assistance haunted her discourse:

Interviewer: Sure, but sometimes it emerges as a little bit of a necessity, doesn’t it?

Eloísa: Yes. Also, now it’s very trendy. But we don’t ask ‘Who are you, who are you?’ I mean, for example, if someone brings a social assistant, or, sexual assistant I mean, well, he can do it, but to promote it or to intermediate it is a no. If they ask me, I tell them the names of the organisations that I know of. But it never happened. I think that they have also formed a small group amongst themselves, and I think that they are already advising one another.

Eloísa immediately linked the interviewer’s broader question about sexuality to the specific support type of sexual assistance (rather than lovers or other kinds of sexual facilitation). And even though she said they neither cared nor knew what service users were up to, we have established they were in fact well aware. Even so, the current director, María, considered sexuality ‘none of her business’, something that she neither knew about nor wanted to know about because it infringed on ‘users’ privacy’. Trying to find out what was going on or what users desired was considered to be going ‘too far’:

Interviewer: And here [in CityLiving], could a sexual assistant come in or not?

María: It would be like any visitor. I always tell them whatever they do in the apartment is ok as long as they don’t smoke drugs. Because that is not allowed, because it is not legal. And don’t push my limits by having a party at 3 o’clock in the morning. But for my part, if you want to have a threesome, I don’t care. They’re not under a regime. They’re in their own homes with the usual neighbours’ rules that you would have in any apartment building. No noise, etc. (...) We’re not detectives, like we discussed before. If users are bothered by us asking questions, that I think is normal. We’re not going to go and investigate if this person who comes in is a prostitute, a friend, or a Tupperware seller. But if we saw atypical situations of violence then we would intervene. But if not, then no.

According to María, the only legitimate reason to intervene in service users’ sexuality would be ‘atypical’ situations such as violence. In other words, CityLiving was always on the lookout.

Managers and staff received no guidance on the treatment of sexuality, and they did not think it necessary either. This led to informal surveillance and the management of ‘unproblematic’ sexuality. For example, the head of human resources, Celia, was ambivalent: on the one hand, she claimed they would not know if it was a sexual assistant who came in; but they knew because the facility is monitored:

Celia: In the end you trust what they [the service users] tell you. Actually, there is no need to tell us anything. I mean, I don’t know if that’s been the case, but they’re not going to tell you ‘My sexual assistant is coming’. A visitor is coming who may be a friend. She identifies herself as a friend who goes to the apartment [number]. That’s it. So that’s why I’m telling you I’m giving you my personal opinion, not the institution’s, because this issue has never been raised. Prostitution I guess is not allowed, because it is forbidden, but sexual assistance… Well, I’m never going to know if a sexual assistant comes. And if I knew, personally I wouldn’t see it as something wrong. It’s not an illegal practice.

Interestingly, it is emphasised that users ‘are not under a regime’ and may do anything in the privacy of their homes insofar as it is ‘legal’ and does not bother their neighbours. However, activities such as using drugs at home (otherwise legal) are banned, and there is a double standard about prostitution and sexual assistance. While neither legal nor illegal in Spain, prostitution is frowned upon while sexual assistance is condoned, and both are de facto allowed because ‘it would be impossible to know’ what was going on in CityLiving.

Sexual assistance was a recurrent topic in conversations between staff too. They had heard about the main organisation in Spain, and some discussed how they reacted to the question of support for masturbation. When one staff member was asked about her working boundaries, she immediately mentioned the hypothetical demand for sexual support:

If they ask you for something sexual, no, because there are already some people who do this – we don’t, no, we don’t go there (…) But, well… we can orient them, we can say ‘Look, there is this organisation’. (Rita, Staff)

She began by explaining that for ‘something sexual’ there were ‘other people’; however, when asked for specifics, she extended her hypothetical support to tasks that could be defined as sexual assistance or sexual support. For example, she states she would not mind hel** a couple: ‘Look, if someone explains to me: my partner is coming, please, help me to position me in this way. Well, why not? I could do it’. She was even more specific when asked about more intimate types of sexual facilitation such as hel** someone put on a condom:

No, I don’t think that [would be a problem] either. The limit would be, let’s say, in the relationship itself. You know? If he asks us to put on the condom because he’s going to do… there would not be a problem. As if he would tell me ‘Please, bring me closer [to a sexual toy]’. I would fetch it, leave it there and leave the room. (Rita, Staff)

Together with another member of staff, Rita had contacted the main sexual assistance organisation for information about their services. Although there was no open discussion or training about sexuality and potential support measures, staff generally seemed interested in discussing it. Rita had even asked CityLiving’s director how to deal with potential sexual requests (while the director said in her interview she had had no requests about sexuality).

Having been hospital patients before moving to the facility, users had sometimes had some sex education appropriate to their circumstances, especially about reproductive health. In contrast, the topic was largely disregarded in CityLiving. When service users did not receive information or support about sexuality following injury, they were left to navigate it as best they could. One such uncertainty related to how their condition affected their bodies. They had little information other than the possibility of being prescribed a ‘blue pill’ (meaning Viagra), as Fabio (User) explained:

Interviewer: If you had a partner now or in a few months’ time, how do you think that relationship would be different from previous relationships?

Fabio: Much more decent. I don’t know if she should also be in a wheelchair or if she could be a normal one. I don’t know… Having to tell someone ‘I need a schedule for bowel management’ … A potential partner must be with me out of love, not out of financial interest or whatever. I don’t know, I don’t think about it, I don’t think about it, but of course it’s going to be different, of course. (…) Well, because apparently, I don’t know if I can have sex. I don’t know.

Interviewer: And they didn’t inform you? Because in [the hospital], there’s a unit like …?

Fabio: Yes, there is a blue pill. The doctor offers you the pill. But I’m not in the mood now to explore that. Honestly, I’m not. I also heard about an organisation that connects you with a person who can stimulate you, but you have to pay – but no, no.

Evidently, users had left hospital with nagging doubts not only about their sexual future, but also of their lovability. Fabio implied he had to be wary of opportunists and would need someone with extraordinary moral qualities (‘more decent’), someone deemed abnormal (‘could she be “normal” or would she have to be disabled?’) or a sex worker. As for the latter, the service user refers to ‘an organisation that connects you with a person who can stimulate you’, meaning a sexual assistance organisation—but this service was also surrounded by uncertainty. Sexual assistance was ill-defined and both staff and users had ‘heard about it’, as if it were a ghost haunting CityLiving, still clearly embedded in cultural views of sexual assistance as morally questionable.

Discussion

In a recent study of care practices in rehabilitation hospitals in Spain, García-Santesmases and Sanmiquel-Molinero (2022) conclude that ‘The latent function of the hospital is to adjust the disabled body-subject to the fact that both the decision-making and the execution of anything concerning their corporeality are in expert hands’ (p. 392; see also Sullivan, 2015). CityLiving shares this latent function, but with a twist: users are made to adjust to such constraints on their autonomy in the name of independent living. CityLiving thus fits the conception of a post-institutional facility characterised by ‘a way of governing that both seeks to nurture the reason and autonomy of individuals to craft citizens and upholds their otherness by surveillance and restraints’ (Altermark, 2017, p. 154). To follow Foucault, post-institutionalisation is the operationalisation of two ways of governing people: in the first, governmentality creates self-ruling subjects who are allowed to be free in a particular way; and in the second, disciplinary processes subjectify individuals ‘from the outside’ to render them controllable (Tremain, 2015).

Regarding sexuality, CityLiving’s policy could be defined as one of ‘strategic ignorance’ that allows ‘both governors and the governed to deny awareness of things if it is not in their interest to acknowledge’ (McGoey, 2012, p. 4). As Sedgwick (2008) points out, knowledge and ignorance are mutually constitutive, meaning that strategic ignorance is deeply intertwined with implicit strategic ‘truths’ about sexuality and disability. This policy revolves around three paradoxes: between support and autonomy, between private and public, and between sexualisation and desexualisation.

Support Versus Autonomy

CityLiving is a post-institution created by a rehabilitation hospital but claims to be an IL facility. That creates a paradox between the practical support offered and users being pushed to become independent. CityLiving brand of IL centres on encouraging ‘the person to do more everyday activities by themselves’. This is the opposite of standard IL, which promotes autonomy and self-determination in how and what services are offered, including by which personal assistant. However, this is perfectly normal in rehabilitation—indeed, it is the dominant professional paradigm. In the words of Graby (2018, p. 44), ‘A professional ideology of aiming to maximise disabled people’s “independence”, while viewing independence only as self-sufficiency … can in fact have the result of reducing disabled people’s autonomy’. As one of the IL movement’s forefathers said, ‘Without independence there can be no sound sexuality’ (Ratzka, 1998, n.p.).

Activists have long recognised that sexuality should be an explicit part of IL policy, because sexuality is intrinsically political, and not doing is also a way of doing (García-Santesmases et al., 2017; Bahner, 2015b, 2020; Shakespeare et al., 1996). The professionals’ ‘common sense’ (ideas, prejudices, and stereotypes) determines their performance, and thus, the users’ daily lives, interactions, and possibilities (Lipsky, 2010), so that ultimately it is the staff members’ morality that determines the services on offer—in the words of Hasenfeld (2010a), they are ‘processed’ in a way that dehumanises service users to conform to certain role expectations. This highlights the unequal power relationship fundamental to HSOs, where staff have the mandate to decide who gets what, when, and how (Lipsky, 2010). The power imbalance becomes a barrier to users, stop** them from complaining, exercising their rights, or demanding better treatment since they are vulnerable to the discretionary judgement of the staff who control the service delivery (Hasenfeld, 2010a), as seen in the examples of service users who did not dare complain.

However, as any Foucauldian analysis will find, where there is power there is also resistance (Tremain, 2015). While most interviewees expressed awareness of the limitations placed on their private and sex lives and conducted themselves accordingly, for example by not addressing their sexual needs or questions, others had various strategies for securing their privacy and expressing their sexuality by simply removing their sex lives from CityLiving and, for example, meeting their partners in hotels instead. However, these strategies entailed undertaking extenuating ‘emotional work’ (Liddiard, 2018) and users sometimes ‘corpse’ (Goodley, 2017). They give up the fight, fearing retaliation from the sovereign post-institution. Not everyone can undertake such acts of resistance—and were IL policies put into practice they would not need to. As Hasenfeld (2010a, p. 13) notes, ‘devalued clients are far less likely to exercise a “voice” option, through protest or collective mobilisation, to influence the very policies that denigrate them, and by their acquiescence, they reinforce them’. In an HSO that in many ways circumscribes users’ freedom and self-determination, there is little room to express resistance, far less agency, and autonomy.

Private Versus Public

CityLiving’s close association with a rehabilitation hospital creates a paradox regarding the management of sexuality. CityLiving equates IL with the absence of an explicit policy on sexuality, which is considered ‘individual’, ‘private’, and ‘none of the institution’s business’, and thus rendered ‘unknowable’ and ‘uncontrollable’. Yet in order for CityLiving to adhere to the norms of the hospital that created it, sexuality must be deemed both ‘private’ and ‘public’ at the same time. Sexuality is ‘private’ and ‘unknowable’ because healthcare settings are meant to be morally neutral (Lynöe et al., 2017), while sex—especially non-normative sex, such as disabled, commercial, or assisted sex—is considered ‘morally reprehensible’ (Shildrick, 2007, p. 60). As Shildrick points out, disability services often exhibit ‘fears that non-normative sexuality is always a potential point of breakdown in a well-ordered society’ (p. 54). Such societal views impact HSOs and how they reproduce a certain moral order (Brodkin, 2010; Hasenfeld, 2010a, b).

At the same time, the objectification of users as ‘patients in need of intervention directed at increasing their autonomy’ calls for strict surveillance of their behaviour, so their sexuality must be public, meaning ‘knowable’ and ‘controllable’. As Frankowski and Clark recognise,

Almost every aspect of a resident’s life is noted by someone and recorded, even if only mentally. As for sex and intimacy, this environment runs counter to the cultural prescription that sex is a private act between consenting adults. Almost nothing in assisted living is private or consensual. (Frankowski & Clark, 2009, p. 33)

While that may be true for many non-disabled people, for CityLiving’s service users there was no real privacy. And without privacy, it is more difficult to express one’s sexuality (Bahner, 2012). Thus, sexuality is simultaneously officially silenced (privatised and informally controlled (publicised). The contradictory nature of privacy versus publicity leaves gossip and ‘informal knowledge’ as the only possible management resource for users’ sexuality. Waddington argues that gossip should not be neglected as a ‘management resource’ (2016, p. 812) because it is a ‘potentially valuable early warning indicator of risk and failure in healthcare systems’ (p. 815). At CityLiving, far from being neglected, gossip was the management strategy of choice, being embedded in the organisational routines as ‘the “invisible hand” that controls workers’ behaviours and actions’ (Hasenfeld, 2010a, p. 13). Institutional silence about sexuality, including a lack of guidelines and regulations, created a situation in which individual staff members’ moral judgement was the driving force in the management and ‘processing’ of service users’ sex lives (Bahner, 2013, 2015a, b; Feely, 2016; Kulick & Rydström, 2015). It seems managers reasoned that it was their responsibility to make sure that the institution, through its workers, upheld certain values and routines to protect the moral order (Hasenfeld, 2010b)—a regulated sexuality that was never too visible.

What, then, of Shildrick (2007), who cautions against creating new forms of governance when regulating sexual support? Applying a Foucauldian perspective, Shildrick argues no one can escape the regulatory power of social policy, but that disabled people are especially vulnerable to extreme disciplinary measures aimed at their sex lives, if only because of their dependence on welfare state measures. The answer is that disabled people should always have a hand in the policies and services that support their daily lives—including their sex lives (see García-Santesmases et al., 2017; Bahner, 2020).

Sexualisation Versus Desexualisation

While CityLiving, as a post-institution, claimed to dismiss sexuality as an area for intervention on the grounds of it being a private matter, it did explicitly regulate and act on other conventionally ‘private’ matters, such as hel** users with daily activities such as showering or going to the toilet. This contradiction can only be sustained by resorting to public degenderisation and desexualisation (García-Santesmases & Sanmiquel-Molinero, 2022). Occasionally, this happens when members of staff adopt an ableist register and explicitly disavow users’ sexual potential by contrasting them to their ‘gendered/sexualised self before disability’; often, however, it is when professionalism is coupled with strategic ignorance of the highly gendered, sexualised nature of care (and users’ preferences and differences). As Shildrick points out, this unknowing actively constructs disabled people as non-sexual and manages their sexuality by ‘misrecognition’ (2007, p. 55). Such disavowals seem to follow a heterosexist pattern: female users who expressed discomfort at being helped by a male attendant with highly gendered tasks (such as changing sanitary pads) were quickly dismissed, but it was a different story for male users. When non-heterosexual male staff might ‘unsettle’ male users, it fell to staff to abstain from performing the care tasks. Yet, when male users displayed highly gendered or even sexist behaviour (flirting with female staff or giving them sexualised nicknames), it again fell to staff to do the emotional work (Liddiard, 2018) and deflect the behaviour by joking about it or refraining from speaking up. Whether the examples of flirting discussed by the interviewees were real or not, they show how the use of gossip created bonds between staff members while othering service users as ‘undesirable’ in their current state. Evidently, staff had their own opinions about which strategy was appropriate, and how best to reconcile themselves to it and negotiate it with others. With their personal judgement on show, they were put in the difficult position of having to fulfil CityLiving’s ideal of treating all users the same, while simultaneously meeting users on their own terms as individuals (Lipsky, 2010).

The ghost of sexual assistance (always there but impossible to grasp) played an essential role in the dynamic interplay between genderisation/sexualisation and degenderisation/desexualisation. The incoherence about sexual assistance and support created insecurity at CityLiving, resulting in a less structured provision of service and allowing for individual judgement on the part of staff (see also Bahner, 2013, 2015a). The (non-public, non-official) recognition of sexual assistance as a ‘need’ (for male users) gendered and sexualised them. Paradoxically, when asked about sexuality, CityLiving’s staff and managers immediately (and only) linked it to sexual assistance, thus degendering and desexualising users and reinforcing the notion that they cannot express sexuality in non-facilitated ways, thus making their desirability and lovability unthinkable (see Liddiard, 2018). Disabled males, by asserting their masculinity, thus resist ableist degenderisation and desexualisation (Gerschick, 2000; Shuttleworth et al., 2012). We would argue that they do so by making heterosexist remarks to staff and reclaiming sexual assistance. On the other hand, female staff resist these heterosexist practices by degendering and desexualising users, resorting to an ableist othering of disabled sexuality. In the same vein, while sexual assistance can be thought of as a form of non-normative sexuality penetrating a post-institution, it is arguably more closely linked to the medical model of disability (Nayak, 2013), where sexuality is seen as a matter of masculine release, rather than eroticism and intimacy (García-Santesmases & Branco Ferreira, 2016).

Similarly, it was when discussing sexual support that sexuality was seen primarily in medical terms. In discussing different situations, CityLiving’s staff and managers seemed to understand the limit to be giving pleasure to someone else with their own bodies, which in some countries is called sexual assistance, in contrast to sexual facilitation, which is framed as support for the user to be sexual on their own (Wotton, 2021). This is a common boundary drawn by professionals between what is considered acceptable sexual support—as non-sexual as possible—and unacceptable sexual support felt to infringe on a professional’s own sexual boundaries (Bahner, 2013, 2015a). However, what is considered ‘sexual’ in the first place, and by extension what is acceptable or not, is largely value-based and related to moral boundaries and the moral work done by HSOs (Hasenfeld, 2010b). Again, these examples show the discretionary nature of HSOs and how society’s cultural values permeate their institutional logics (Brodkin, 2010). In the case of CityLiving, the logic seemed obvious to managers and staff, not needing further elaboration, and thus an ‘invisible hand’ guiding their service delivery in a certain moral direction (Hasenfeld, 2010a).

Conclusions

Our findings warn against retreating into the vestiges of the large institutionalising projects of the twentieth century that constrained the opportunities for independence and self-determination for disabled people, including their sexuality. In the case study analysed here, users were produced as subjects who struggled to become (physically and morally) independent, while being subject to intense informal surveillance that limited their scope for privacy and intimacy, to the point of eroding their autonomy and self-determination. This article shows independent living is necessary for disabled service users to explore and express their sexuality, including opportunities for intimacy, privacy, dating, relationships, and other social dimensions. Just as a medical model of disability is insufficient for adequately supporting daily life, sexuality cannot be reduced to medical interventions and the compartmentalisation of biological needs. When the human element disappears from the bureaucracy of disability services so does the human element of sexuality.

Policy Implications

We conclude from our analysis and the literature that policies are needed which acknowledge sexual health and rights as a part of disability, and in particular disability services provision (Bahner, 2020; Kulick & Rydström, 2015). Without policy recognition there is a risk of ‘management by non-recognition’, whereby the desexualising stereotypes that permeate society may take precedence in the management of services (Bahner, 2015a; Shildrick, 2007). This can lead to managers and staff not being aware of sexuality and disability rights, and not least how to work with them practice. So, we see the necessity for education and training for both managers and staff in how to work ethically and professionally with sexual rights in practice. This should start with the recognition of disabled people as sexual beings, which is not a given, and ‘The Recognition Model’ for working with sexual rights in disability services could therefore be a starting point (Couldrick et al., 2010). Considering there is a wide availability of sexual support and services worldwide (Wotton, 2021), clear information about what is available locally ought to be part of the support given to service users so they can make informed choices.

In the Spanish case, we see that even though there are some Centres for Independent Living (CILs), they are severely underfunded and disabled people themselves, social workers, and the public are unaware of their existence. Social workers usually privilege other care schemes such as institutionalisation, domestic services by state-controlled workers, or the allowance for non-professional carers (where relatives can receive a small carer’s allowance)—clearly misaligned with the CRPD’s intentions (López-Pérez & Álvarez-Nieto, 2020).

There also needs to be education and training in IL since, remarkably, most interviewees seem unaware of the true meaning of IL and the disability movement’s work in this area. Training in the social model of disability would be a useful foundation for improved personal assistance—for example, the role of personal assistants in hel** to overcome barriers. Disabled people’s organisations are well positioned to provide this training (Griffiths, 2023). Also, it should be noted that when people who have recently sustained an impairment leave hospital, they are usually still not officially classified as ‘disabled’ by the state and must wait some time before being eligible for personal assistance services. This makes transitional facilities where people can learn to manage assistance in accordance with the IL philosophy—even before they access it—all the more necessary.

In the longer term, the hope is for a society in which sexual citizenship for disabled people is made possible more widely, through increased awareness of disability rights, including greater accessibility and opportunities for inclusion in the community on equal terms with the general population. If disabled people are not regarded as equal citizens, their recognition as sexual citizens is less likely (Bahner, 2020; Bylund, 2022; Emens, 2009; Kulick & Rydström, 2015).

Limitations

The main limitation of the present study is that it only focuses on one HSO, which is arguably one of a kind. To our knowledge, there are no other facilities that resemble CityLiving, not even in Spain, where traditional residential settings still predominate. CityLiving is not only unique; it is also exclusive. Only those who are at the top of the socio-economic ladder can afford to live there. Therefore, we have not reflected on the experiences or needs of disabled people who do not have the opportunity to live in a transitional setting like CityLiving. Similarly, although we interviewed as representative a sample as possible by including all users, there were nevertheless few female users. This was not only a matter of numbers but of presence: the only two female users then living at CityLiving were isolated and did not have strong ties with the rest of the users, perhaps precisely because they were women. This affects their presence in the data: they were interviewed but they barely appear in the field notes as they did not spend time in the communal areas. Future studies should address this omission by examining the sexual experiences of women with disabilities and those on lower incomes, especially in residential settings. However, based on our reading of the international literature, the institutional structures we have analysed seem common in similar residential settings elsewhere, so we believe that our results are still applicable elsewhere.