The UN Convention on the Rights of People with Disabilities (of which Ireland is a signatory) states that ‘States Parties shall take effective and appropriate measures to eliminate discrimination against persons with disabilities in all matters relating to marriage, family, parenthood and relationships, on an equal basis with others’ (2006: Article 23). Now in 2011, Ireland has still not ratified the UN Convention, for legal reasons beyond the scope of this article. Here we will focus on the perspectives and experiences of individual care staff in organisations providing services to people with intellectual disabilities (PWID). Recent research indicates that care staff in Ireland are working within a system that PWID recognise to be unsupportive of their rights to have intimate relationships (Healy et al. 2009; Kelly et al. 2009). Furthermore, the National Federation of Voluntary Bodies flags the ‘limiting effect of prevailing delivery model on promoting relationships, citizenship and inclusion’ (National Federation of Voluntary Bodies 2009: 15).
From the perspective of care staff themselves, a recent Irish study suggests they are uncertain about discussing sexuality, intimate relationships and privacy with PWID and that they want more organisational guidelines on this issue (Evans et al. 2009). Therefore, it is important to examine in more detail the relationship between care staff perspectives on the right of PWID to have intimate relationships, and how personal perspectives, work practices and organisational policies impact on one another.
This article presents the findings from the author’s dissertation relating to care staff (MSc in Applied Social Research (2010), Trinity College Dublin). The findings are discussed with respect to intimate relationships as a human right. The dissertation explored:
1. The perspectives of care staff on the right of people with intellectual disabilities to have intimate relationships
2. Their experiences of supporting people using their service to have intimate relationships
3. The effect, if any, of organisational policies on their work practices in this area.
The article focuses on the comments made by care staff to allow a fuller discussion of their perspectives and experiences. Six care staff (five women, one man) participated in the study. Three of the care staff participated in a focus group and the remainder in a semi-structured interview. Four of the care staff provided their ages, which ranged from 26 to 28 years. (Pseudonyms have been used below for each of the participants.)
Care staff were unanimous in expressing the opinion that PWID should be supported to have intimate relationships. However, there was an undercurrent of fear around this issue. There was fear that service users’ vulnerabilities could be exploited—that PWID could get hurt or abused.
Concern about the well being and safety of PWID was accompanied by a feeling of empathy for their situation. This situation was interpreted by care staff as PWID having less freedom socially and sexually in comparison to themselves. Áine expressed this as a lack of opportunity to do ‘things maybe we shouldn’t have’, such as ‘go to discos and kiss boys.’ (Care staff, focus group, July 2010). One care staff, Jenny, related how her guilt about the contrast between her own social life and that of her client had led to her lying about her weekend to spare her client’s feelings, as there’s ‘no difference between what I want for my weekend and what she wants for her weekend. I get to do it. She doesn’t, you know.’
Staff were supportive of the idea of PWID having intimate relationships and put themselves in the shoes of PWID. The next section explores the work practices of staff in relation to taking action to support PWID to have relationships.
Staff talked about other staff not taking the issue of relationships for PWID seriously within the service. Sheila referred to a situation where this attitude varied from setting to setting ‘It’s a bit different in every house that you go to. In some, staff will support it and in other places it’s kind of seen as a joke – that you know – what would they be doing having a relationship?’ (Sheila, focus group, July 2010).
Staff referred frequently to ‘the house,’ ‘organisation’ or ‘team’ supporting or not supporting the PWID, and rarely to themselves as individuals, so it was difficult to know who exactly was providing the support to PWID. This made the factors that led staff to actually support PWID to have intimate relationships unclear. It was impossible to tease out the relationship between care staff’s personal opinions and their work practice, because they spoke of their actions in supporting PWID as a team and not as individuals.
What influences staff support
Staff referred to staffing levels as a barrier to supporting the social lives of PWID. Specifically, funding for staff cover to facilitate PWID socialising as individuals in the evenings was an issue. For example, one care staff stated that typical staff cover at a group home would not allow one staff member to support a person who wished to go on a date, as it would leave inadequate numbers of staff at the home with the remaining residents.
Organisational policies on relationships and sexuality were also a barrier. Just one of the six care staff felt confident that they knew the policy on relationships and sexuality in their organization. They described it as ‘not very detailed and not very helpful to staff’ (Áine, focus group, July 2010). Other staff were unsure about either the existence of a policy or its contents. As well as official policy, some staff described an unofficial lack of support for relationships and an over-emphasis on household tasks such as cleaning the residential centre/group home.
Although all the staff said they believed PWID had the right to intimate relationships, some expressed the opinion that other factors needed to be considered before the issue of intimate relationships, such as having more choice about diet and living arrangements. More platonic social opportunities were also mentioned.
Overall, the strongest theme that emerged from the staff accounts was fear about being held personally liable by the organisation and/or management if supporting relationships led to a negative outcome such as abuse or an unwanted pregnancy.
The concern for the welfare and wellbeing of service users was palpable in the conversations with care staff who participated in this study. Care staff expressed fear for the welfare of the service user if something were to go wrong, empathy for their restricted lifestyle, and at times guilt for having more social opportunities in their own lives. All theoretically supported the right of PWID to have intimate relationships. However, what was striking was the lack of personal agency in the accounts of how PWID were helped within organisations to have non-platonic relationships. Specifically, staff spoke of instances where, for example, a service user was supported to go on a date, but it was unclear who had provided the support. There was a gap between the personal perspectives of care staff and their own work practices.
The crowbar that widened this gap appeared to be the policies of the organisation, both official and unofficial, around the area of relationships and sexuality for PWID. Beyond actual guidelines and policies, staff described a more impervious and subtle lack of organisational support, where prioritising of housekeeping tasks and general lack of resources led indirectly to a situation where (in the words of one care staff) there was no time to even sit down and talk about relationships. In the focus group discussion, sometimes it seemed that staff had internalised the organisational culture when they talked about having to consider other factors such as choice about diet before relationships. These comments are made out of concern for PWID, but it leads to several questions. Can we prioritise one need over another in the life of a person with a disability? Secondly, do we consider intimate relationships or even simply sex as an absolute right or an optional extra in the lives of PWID?
These are clear questions from the safety of an outsider’s position doing research. The reality is that care staff face every day the delicate task of trying to balance care and empowerment of PWID within a system which is imperfect and underfunded. Ireland has signed up to the UN CPRD which specifies that Ireland must ‘take effective and appropriate measures’ to remove barriers in the area of marriage, family, parenthood and relationships. These effective measures include changes in Irish law so that the UN Convention can be ratified. Ratifying the UN CRPD will form the foundation of recognition of intimate relationships as a human right for PWID in Ireland.
Besides changes in legislation, there are other measures that, if taken, would facilitate staff to support PWID to have relationships. These include:
1. National Quality Standards: Residential Services for People with Disabilities (Health Information and Quality Authority 2008) are evaluated by PWID with a view towards making them enforceable and compulsory. The standards recommend that ‘the individual’s privacy and dignity be respected at all times, and with particular regard to […] expressions of intimacy and sexuality.’ (p.19).
2. More resources are allocated to staff training in the area of relationships and sexuality and that all the training has input from self-advocates with an intellectual disability.
3. HSE provides funding for organisations to provide out-of-hours services in order to facilitate opportunities for social interaction for people with an intellectual disability.
4. An audit of the human rights component to social care training in Ireland.