This blog was written by Beau Nieuwenhuijs on her observations after a conversation with Megan Johnson from LGBT Health and David Ward who focuses on LGBT carers on the tide network.
The idea for the campaign to ‘reclaim the narrative’ of carers came about after our team participated in Megan’s LGBT and dementia training. One of the things I took from that session is that language around identity is crucial in acknowledging and valuing one’s self. Certain identity terms can serve a source of empowerment and pride and lead to a reduction of shame people might feel around that identity. This reduction of shame will lead to stronger rights advocates who will bring about better supports, services and most crucially acceptance. We see this blog as an opportunity to consider the similarity of themes across different intersections of carers. Rather than looking at LGBT carers as an afterthought or a tokenistic add on, we need to consider everything we do through a lens of equality. We work to celebrate diversity and have embedded inclusivity at our core. We can learn so much from the LGBT community and we want to show our solidarity: their fight for rights and equality is our fight.
One of the themes we first want to consider is gender. There is a gendered assumption that women are naturally more caring and loving. Therefore, when someone gets dementia there is an expectation that the woman will take up the role of unpaid carer. There are no questions asked about her willingness, capacity, ability or desire to do so. It is expected that she takes on this role out of love or virtue. We know that the majority of carers of people with dementia are women. Many carer organisations, including ourselves, argue this point over and over again: women are disproportionately affected by dementia, whether as carers or through diagnoses. The enormous contribution they make to the economy by providing this unpaid care is undervalued and unsupported. However, we need to realise that gay, bi and trans men as well as non-binary people are subject to these gendered assumptions as well. There is the stereotype that non-binary people, gay, bi and trans men are more feminine and therefore possess the same caring and loving nature. We can see this in the societal expectation that every man in a caring profession ‘must’ be gay. This is equally visible in unpaid care. Gay, bi and trans men and non-binary people are as likely as women to take on an unpaid caring role. However, the little support and recognition that is available for unpaid carers through services and campaigns is generally targeted at straight cisgender women. This then further reinforces the feminisation of care by making gay, bi and trans men and non-binary carers less visible.
Let’s consider the support and services that are available to unpaid carers. In Scotland carers are entitled to an adult care and support plan. While the support they are entitled to is dependent on the eligibility criteria each council sets and is therefore different across the 32 different local authorities, carers are often not even asking for the support they require. There seem to be various thought patterns behind this. First of all, carers don’t seem to ask for what they need or want because there’s the idea that there’s always someone worse off so they don’t really deserve it. Alternatively, people might think that the support they need to remain connected to their communities will be considered frivolous by health and social care providers. Communities don’t always mean the high street – it is vitally important to remain connected to the LGBT community if a carer was an active part of that.
Underlying this are assumptions that people have internalised. Assumptions on what support is supposed to look like; what your relationships are supposed to look like; what your caring role is supposed to look like; what living well is supposed to be. However, these assumptions are just that – assumptions. They’re not a reflection of the reality for many individuals. Therefore, since no-one is able to live up to these assumptions and expectations, carers might feel like they’re not enough in their own eyes. Feelings of shame play a big part in that. Shame and vulnerability researcher Brene Brown defines shame as
“the intensely painful feeling or experience of believing that we are flawed and therefore unworthy of love and belonging”.
Shame will take over if you feel like you are not living up to these societal expectations and are failing them. If you feel unworthy of love and belonging and don’t value yourself, you will not ask for support when you need it and you will not stand up for yourself or others. Brene’s solution echoes with what we are trying to do at tide, which is empowering people to open up and speak honestly. Only then will we be able to break through those assumptions and expectations and turn the shame into pride.
For more information about LGBT and dementia please contact LGBT Health’s national dementia project. They have also recently produced a ‘guide to pride’ for people working in the sector who are wanting to engage with Pride events across Scotland. If you’re a carer and want to talk to us about your experiences, we would love to hear from you.