The joy of disabled mutual care

When we think of ‘care’ and ‘disability’, the stereotype is a non-disabled carer (parent, partner or worker) looking after a passive disabled person. This is a pretty common dynamic, and it’s common for a reason; non-disabled people are likely to have the most capacity to offer care. However, as disabled people we know it’s far from the only way that care happens. If you’re disabled and you’ve dated another disabled person, you’ve done the alternative - ‘mutual care’. It’s a phrase that describes disabled people providing emotional and practical support to one another. That could be in the context of a disabled couple, disabled families and whānau, or disabled friends and community networks. Mutual care can bring joy and possibility to the lives of disabled people, particularly if that person has previously experienced care that was othering or infantilising. For older people - considering 49% of New Zealanders over 65 are disabled - it may even be necessary as a way of connecting with their partners and wider community. 

The most obvious benefit of mutual care as a concept is that you can assume the person caring for you can empathise with your experience, rather than trying to understand it from an outside perspective. If you’re in an “interabled” relationship, for example, this tends to come with a learning curve for both partners - the non-disabled partner is not just learning about who you are as a person, they’re learning about your needs, your disability history, and potentially having to learn about the politics of disability too. In my own life, I share a lot of the same diagnoses as my partner, which has huge advantages, as well as some challenges. We both understand where each other is coming from, and what our needs are, but also tend to struggle with the same things, which can be hard to support each other with. It requires navigation and negotiation to ensure we’re both getting care and rest, even if that sometimes means the house doesn’t get cleaned that week.

For couples caring for each other, mutual care can be part of a “patchwork of help” alongside formal and community support. Researcher Cristina Joy Torgé found when interviewing older disabled couples, a lot of them valued mutual care highly because it allowed them to be “alone with each other…free from assistants”, and express “closeness and affection” as a couple. One example of this was a husband who, when support workers came round, would ask them to set out clothes for his wife so he could help her get dressed. Other couples described it more as an automatic process, like “the right hand helping the left”. Mutual care was more reliable and natural, even if it felt like additional stress on the couple themselves. 

It can be similar for parents and children in mutual caring relationships, which typically occur when a parent of a disabled person begins to age and become disabled themselves. In a report by the Foundation for People with Learning Disabilities, they highlight their family experience and knowledge of care and may even feel distrust toward care services. Adult children who begin to support their parents might also feel satisfaction from being able to ‘return’ the care they’ve been provided throughout their life. It also keeps those families together, rather than them potentially being separated into care homes. The challenge that faces these families is that they almost fall into this situation of caring, rather than it being an arrangement they have planned. It seems to be fairly frowned upon by services, who believe mutual care is risky - though the parents and children in these situations continue to disagree. 

Bigger families - like multigenerational households, which are common in Māori whānau - are set up well to look after each other. Of course it’s not likely that all the members of a whānau are disabled, but studies suggest that those doing the most care for disabled whānau are disabled themselves. One paper on kaumatua perspectives of care explained: “In Aotearoa New Zealand, individuals caring for a family member are more likely to experience poor health than those who do not.” Māori women are also more likely to be disabled than Māori men, as well as more likely to be informal carers. The dynamic works because of support from the whole collective, who know they’ll be supported in return: “Correct enactment (tikanga) of responsibilities and obligations embedded in these supportive relationships enhances, sustains, and restores a person’s sacred attributes (tapu); the strength and standing (mana) of the whānau; and family members’ relationships with each other.” Despite the strength of connection and caring practice, these whānau still face prejudice from healthcare professionals who don’t value their experience, and instead recommend culturally inappropriate options for care. The mutual care within these whānau, instead of relying on two people providing mutual care, instead offers ‘interwoven’ care in which all members care for one another. This type of mutual care is less common in Western families, because Māori values of whanaungatanga and manaakitanga are at the core of whānau mutual care. 

The last type of mutual care, which can overlap with all the others, is the care disabled community gives to each other. Writing for the Disability Visibility Project, Leah Lakshmi Piepzna-Samarasinha wrote a powerful, emotional essay about this care, describing their experience of practicing mutual care (or mutual aid) during Covid: “Friends who were disabled but less immune compromised than me texted saying they were going to the grocery store and did I need anything?”

Disabled people, having found ways to care for ourselves and each other, continue to survive even when our needs are invisible to non-disabled people. We can’t avoid the fact that it’s challenging. As Piepzna-Samarasinha puts it: “It means having to figure out what your limits are about, what you have the spoons to do, and where you draw the line… it means having to figure out time and again the line between support and saving, between interdependence and co-dependence.” Particularly when we have no formal family, the chosen family we find in disabled community might be the best way to access mutual care.

There’s no doubt that formal care plays an important role in a lot of disabled people’s lives. We might have no other care available to us and our needs might be more complex than an informal carer can provide for. The existence of mutual care though is a good reminder of the strength of disabled community, and what we can gain just by being there for one another.

📸 Gender Spectrum Collection