In Australia, family members of people with disability are often called ‘carers’ or – if they are young – ‘young carers’. The terms ‘carer’ and ‘young carer’ are used as a way of recognising the help and assistance that family members give to people with disability and for ensuring that they can access support services. But what does it feel like to be called a ‘young carer’? And what does the term mean for the relationships that young people with disability share with their families? This post looks at these issues for young people with disability and their brothers and sisters.

Research about siblings and care

My research is about young adult siblings where one has a disability. I spoke to 25 young people with disability and 21 brothers and sisters of young people with disability, all aged 15-29, about their sibling relationships and the role that disability plays in their lives.

Many spoke about care, i.e. the help or assistance that a young person with disability receives from family members, in this case, a brother or sister without disability. As this post explains, the people I spoke to said that some types of care are difficult for them and that because of this, during young adulthood, they prefer to talk and act in very specific ways when it comes to care.

Siblings set boundaries

Both young people with disability and their brothers and sisters said that there are some types of care that they find more difficult than others. Low-key tasks like preparing food are not a problem, but personal care (e.g. dressing, showering, toileting) and care that involves the sibling without disability controlling the behaviour of the young person with disability can be difficult for them. Both young people with disability and their brothers and sisters said they set boundaries and, where they can, try hard not to be part of these types of care together. They can set these boundaries particularly during young adulthood because usually parents, rather than siblings, are the main people responsible for care in the family.

The siblings said that personal and controlling care is difficult for them because it challenges the feeling of being a sibling. For example, one person said that when she has to control the behaviour of her sister with disability in public she feels like she “can’t just entirely be [her sister’s] sister”, because she feels like she is taking on the role of a carer, manager or parent instead. Another person said that he is worried about taking on more personal care responsibilities for his sister with disability because “Mum and Dad have always wanted me to feel like one of the siblings and if I take on more of a caring role then I’ll lose that”. These comments show that they set boundaries because they want to continue feeling like siblings, not like another relationship instead.

Siblings talk carefully

Young people with disability and their brothers and sisters also talk carefully about care. Wherever possible, both appear to use everyday words like ‘help’, ‘helping out’ and ‘looking after’ to describe what happens between them, instead of using the word ‘care’ itself. They use these everyday words for a whole range of types of care, from small tasks at home to transport and personal care.

The main times when they use the word ‘care’ itself appears to be when the sibling without disability steps in to a very extensive care role usually held by parents or support workers, often in extenuating circumstances where there is no one else available to do the role. They also use the word ‘care’ when they are describing how service providers and the public view the role of siblings of people with disability.

As such, ‘care’ isn’t a word that people with disability and their brothers and sisters choose themselves – rather, it is a term they appear to use only when they really have to or when describing the language of other people. Given the choice, they prefer more everyday terms.

Siblings are reciprocal

Young people with disability and their brothers and sisters also use the same words to talk about the help or assistance that they give to each other. Just like they often call the care that young people with disability receive from their brothers and sisters ‘help’ or ‘helping out’, they also describe the help that young people with disability give to their brothers and sisters without disability as ‘help’ and ‘helping out’ too. This could be, for example, when young people with disability help their brother or sister with chores at home or with letting them in when they are locked out of the house.

By using the same words for the help and assistance that both siblings give to each other, young people with disability and their brothers and sisters emphasise the same kind of reciprocity that any siblings might have with each other – by framing what they both do as ‘help’, disability is not emphasised as much and instead they frame what they do more as about what might happen between any siblings anyway. This can also be understood as helping them to feel like siblings.

Why does it matter what we say about siblings and care?

The experiences of the young people with disability and brothers and sisters in my study suggest that it matters what we say when we talk about siblings and care.

My research shows that ‘care’ can be a tricky word for some young people with disability and their brothers and sisters – it can emphasise disability in a way that gets away from the reciprocity that happens between all siblings and therefore it may not be a word that young people with disability and their brothers and sisters identify with (or want to identify with) as siblings. It is important to use words that reflect how young people with disability and their brothers and sisters see themselves. This better supports their relationships.

Further, sometimes it will be important to call young adult siblings of people with disability ‘young carers’, as a way of recognising their contribution to care and ensuring they can access support. However, if siblings of people with disability don’t identify with this term because they don’t often refer to what they do as ‘care’, then they may not actually use supports for ‘young carers’, as they won’t think these are for them. Sometimes support will need to be framed as for ‘young carers’. But framing support in a way that reflects how people see themselves is also important for making sure it is used by the people it intends to help.

For these reasons, words matter and we need to think carefully about what we say when we talk about siblings and care.

Ariella Meltzer 

Ariella is a researcher at the Social Policy Research Centre and Centre for Social Impact, UNSW Sydney. Her research is about disability, siblings, families, young people and relational approaches to disability services. This blog post is a summary of the following article: Meltzer, A. (2017) ‘I couldn’t just entirely be her sister’: The relational and social policy implications of care between young adult siblings with and without disabilities, Journal of Youth Studies (early view).

If you work for a university, you can download a copy of the article here.

If you do not work for a university and would like a free copy of the article, please contact Ariella on [email protected].

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