Encounters with healthcare and social care

This section focuses on the studies that deal with encounters with social services, healthcare and social care – both earlier in life as well as at the time of participation in the studies. Firstly, previous care experiences that the people had during their lives are discussed, and followed by discussion about experiences of elder care or apprehensions about going into elder care. In this section, qualitative studies dominate. In the Swedish public health survey, fewer lesbians aged 65–84 (14%) reported low trust in the healthcare system compared to heterosexual women (19%), and this figure was 22% for gay men compared to 18% for heterosexual men. When it comes to low trust in social services (within which elder care falls), the proportion of lesbians (32%) was slightly higher than that of heterosexuals (27%), while 44% of gay men reported low trust, compared with 34% of heterosexual men (Public Health Agency of Sweden, 2014:117-122).

The previous experiences you have had in your life from interactions with healthcare and social care can play into your expectations and fears concerning what your future interactions with healthcare and social care as you age will be like. Historically, LGBTI people have often had a poor relationship with the healthcare system as well as psychiatry, where medical theory and practice have actively created notions of social normality and deviation – what is healthy and sick (Møllerop, 2013). This has been particularly apparent through pathologisation, i.e. how psychiatry has classified homosexuality as well as trans expressions as forms of mental illness (Törmä et al., 2014).

When it comes to trans people, they often have a specific relationship with the healthcare system since needing trans care have often required a need to undergo an investigation and get a diagnosis for the right to care. This process is very often described as difficult to navigate, characterised by binary gender norms and demanding for the right to what one wants (Egede et al., 2019; Linander, 2018; Siverskog, 2014, 2015, 2016; Törmä et al., 2014). Geography also comes into play here, where proximity to trans care is important. In Åland, for example, trans care is often provided elsewhere, with people being referred to Helsinki, Tampere or Stockholm, where it takes a long time to get a referral. It can be difficult to get support in Åland during this process for mental health care for example (Government of Åland, 2019).

Undergoing a transition as older may mean special experiences. While it is common among older trans women to have come out after retirement, many who wish to undergo surgery have been forced to realise that their health puts a stop to the interventions they would like. This can include heart problems making the narcosis required to undergo the surgery you want impossible (Siverskog, 2016:115–116; Törmä et al., 2014). But it can also include encountering ageist notions during the trans investigation where the necessity to undergo a transition is questioned because the person ‘does not have that long to live’ (Siverskog, 2016; Linander, 2018).

In a Danish study, several participants recall a time when homosexuality was categorised as a mental illness, how they encountered notions of homosexuality as a nervous disorder, symptoms of psychosis and uncertainty about their gender identity. (Vesterlund, 2013). The fact that it was classed as a diagnosis also affected whether people sought counselling for how to relate to their sexuality. One participant tells about how he needed support, but did not want to be registered based on his sexuality and therefore avoided seeing a psychiatrist despite mental health issues (Vesterlund, 2013:124–125). In a Norwegian study, an older lesbian woman remembers that this diagnosis limited how possible it felt to be open about one’s sexuality. That being declared an illness meant that lesbianism was not associated with pride but rather with a category that one did not want to belong to. For gay men in a Norwegian context, it also meant criminalisation, which all in all contributed to the ideal of discretion discussed in previous sections (Eggebø et al., 2019:79).

Homophobia or transphobia may also have been encountered earlier in life in contacts with healthcare and social care, which participants in several qualitative studies describe. In the worst case, this has consequences in the form of people not seeking the care they actually need (Meggers Matthiesen, 2019; Møllerop, 2013; Siverskog, 2016; Törmä et al., 2014). Examples of this are in the Törmäs et al. study (2014) where a couple with one of the partners having dementia had refrained from seeking care because they were afraid of how they would be treated. The study also shows how relatives in same-sex relationships sometimes refrained from attending healthcare appointments with their relative as support to avoid the risk of discrimination (Törmä et al., 2014).

Openness is often highlighted as an important strategy in encounters with healthcare and social care (Siverskog, 2021; (Meggers Matthiesen, 2019). However, to what extent people are open varies /(Siverskog 2021; Löf & Olaison, 2020). Some stress that you need to trust the staff if you are going to come out to them. A lesbian woman talks about feeling out the atmosphere first and trying to sense if she thinks the person will take it well (Löf & Olaison, 2020: 257). Older LGBTI people experience that social services and the healthcare system are characterised by heteronormative and gender normative thinking. This is expressed in the assumption that everyone is a heterosexual cis-person, which in turn renders LGBTI people invisible. Examples of this are forms that need to be filled in with only two gender options, and where there was no option to fill in civil partnerships even before marriage was possible for same-sex couples. The participants also feel that appropriate language and knowledge about LGBTI identities is lacking, which renders them invisible and creates a silence that in itself is perceived as discrimination (Törmä et al., 2014).

In coming out, there is also a tension between invisibility and hypervisibility. Coming out can entail a feeling of security – being seen for who you are – but at the same time there is resistance to being stereotyped and reduced to one’s LGBTI identity (Eggebø et al., 2019:36).  One trans person describes what this can look like in practice: their experience is that as soon as they have told the healthcare staff about their trans identity, confusion often ensues and they have difficulty completing what they are doing; their trans identity suddenly takes all the focus and what the care visit is about ends up in the periphery  (Törmä et al., 2014).

In qualitative studies, especially among older trans people, it is common that they express frustration and weariness at having to educate the healthcare staff they encounter (Bindesbøl Holm Johansen et al., 2015:83 ff.; Löf & Olaison, 2018; Siverskog, 2014, 2016; Törmä et al., 2014):

Some participants describe having the habit of bringing information leaflets about transgender to head off ignorance and avoid repeating themselves again and again. Even during the trans investigation, some had encountered people with poor knowledge, such as speech therapists and counsellors (Siverskog, 2014, 2016). Several participants say they have been referred to by the wrong name, gender and pronoun. In some cases, trans people have experienced a direct unwillingness from the healthcare system to help them because of their trans identity, having experienced that doctors did not want to examine or treat them. Medical centres have also refused to take blood tests related to the trans process. For some trans people, this has led to them seeking out private clinics and many trans people get private health insurance to be able to choose clinics and doctors that they know have trans competence (Törmä et al., 2014). It is repeatedly emphasised in the studies how important it is that there is LGBTI competence in health and social care.

The equal treatment perspective, which has been strong in healthcare and social care, is problematised in several studies because it risks leading to excluding LGBTI people in rendering them invisible. The idea that everyone is equal often contains assumptions about heteronormativity (Löf & Olaisson, 2020:258; Siverskog, 2021).

The time after retirement can mean increased opportunities to choose for yourself which contexts you want to be in and which people you want to have around you, which in turn can lead to greater opportunities for openness. But a greater need for social care can instead mean that these opportunities decrease and that one’s home also becomes someone else’s workplace (Siverskog, 2021a). At the time of their interviews, the vast majority of the participants in the qualitative studies were not in need of elder care, but some studies (Löf & Olaison, 2018; Meggers Matthiesen, 2019) include people receiving elder care interventions, and one study focuses in particular on LGBTI people with elder care interventions (Siverskog, 2021a, 2021b).

Among those who do not yet need social care, many express apprehensions about what it will be like when that time comes when they will need social care from others. While all older people can be worried about illness, dependence, impairments in their capacities, and needing to move to an institution, there are additional worries that are specific to the LGBTI group. These worries are linked to fears of a lack of knowledge about LGBTI in elder care, and of being poorly treated due to their gender identity or sexuality by other residents or staff. This can include fears of being discriminated against by healthcare staff, not getting help with what is important for them in relation to their gender identity, being rejected as a care recipient, getting dementia and losing the capacity to tell the staff what is important to them, worry about what will happen with their hormone therapy, worry about not having their relationships recognised or being able to be open and maybe even having to ‘go back into the closet’ again (Lindholm, 2013; Meggers Matthiesen, 2019; Siverskog, 2014, 2016). Lindholm understood this worry as being based on how elder care, and in particular residential aged care, being seen as a heteronormative institution and their opposition to moving to such an institution can be understood as resisting conforming to its heteronormativity (Lindholm, 2013). In addition to a general concern about the quality of elder care, Meggers Matthiesen interprets this worry as being about encountering homophobia, i.e. negative attitudes or behaviours towards lesbian, gay or bisexual people, while finding it difficult to defend themselves or fend off these behaviours (Meggers Matthiesen, 2019).

Those who do have experience of elder care describe a general silence around gender identity and sexuality in their care, which can be understood from different aspects. On the one hand, this is about the fact that elder care has been subjected to cuts and efficiencies for many years, which has put pressure on working conditions in the sector, which in turn leaves little room for conversation in everyday life between staff and care recipients. It is also about norms, about care as a desexualised place where sex is not something that is talked about. This silence, along with heteronormativity, leaves the entire responsibility for coming out or highlighting LGBTI perspectives on the care recipients (Siverskog, 2021a, 2021b). For those who receive the home care service, this can be trying because so many different individuals visit your home. Among those who are open about their LGBTI identity, this is highlighted as important. It can be about coming out verbally, but also manifesting one’s LGBTI identity through art, books, photos and images (Meggers Matthiesen, 2019; Siverskog, 2021a). Openness is emphasised as a strategy, a way of taking over interpretation of the situation and forestalling it. However, this often involves being always ready to act in response to being treated poorly. Several participants said that if they were to encounter homophobia, they would object and emphasise that this is their home, and homophobes are not welcome there (Meggers Matthiesen, 2019; Siverskog, 2021a).

However, not everyone is open about their sexuality or gender identity in elder care. There are several examples of people being open about it earlier in life but not being open in the context of social care. One example is Helle, a lesbian woman aged 78 who had lived in a nursing home for four years at the time of her interview. She said that she wonders regularly about why she has not dared to come out of the closet in that context and feels that she is “a bit cowardly” (Siverskog, 2021a:106). In a Norwegian study, one of the participants describes how;

The issue of special LGBTI nursing homes comes up in several studies and throughout, the participants’ feelings and thoughts about this are mixed. While some see this option as welcome and something that guarantees freedom from homophobia and transphobia, as well as being able to share experiences with other residents, others are more hesitant, or not interested (Löf & Olaison, 2018; Meggers Matthiesen, 2019; Siverskog, 2016; Vesterlund, 2013).

Another thing that emerges from the interviews is how elder care contexts, and in particular nursing homes, mean reduced privacy and dissolved boundaries between the private and the public – something that can be of great importance for older LGBTI people in light of how their own home has often been a haven in a heteronormative world. This is mainly about staff knocking but not waiting for an answer before entering, which means that perceived opportunities for intimacy and sexual practice are limited (Siverskog, 2021a, 108 et seq.). Access to participation in LGBTI contexts can also be more difficult due to older people’s care needs. This is exemplified by not having access to the internet in connection with moving to a nursing home, which caused one participant in Siverskog’s study to lose all contact with their LGBTI community. Or that because the home help service rarely arrives on time, other activities, such as participation in a senior LGBTI group, sometimes need to be cancelled (Siverskog, 2021a). This leads into the importance of relationships, social networks and LGBTI communities.