Do carers really know best?


I dislike the term ‘carer’ for a number of reasons as well as the whole carer rhetoric, although I am quite aware that this is an sensitive subject for most people.  Throughout my life, the term ‘carer’ has been used to undermine my intelligence as someone most people regard as needing someone to look after their affairs, which is not the case at all.

The typical image of an informal carer is the spouse of someone with dementia who is portrayed as isolated and alone, as their partner is portrayed as lacking the ability to make decisions or contribute to the family. This picture may indeed be accurate in some cases but as the awareness and identification of carers has increased, so has the range of situations.

But what is worrying is that in many cases, individuals and professionals are automatically identifying family members as ‘carers’ even when there is not actually a caring role being performed. This means spouses, parents and siblings of sick and dysabled people are automatically being labelled as carers . Even young brothers and sisters of dysabled children are being labelled as young carers simply because they are related.

So what is the problem with this? Well, amongst the rights carers have is an unwritten right to make decisions, often very important ones, on behalf and for the individuals they look after, even when they have no legal right to do so. More and more  health, social care and other public services are simply taking the carer role at face value and relying on what the carer wants unchallenged, because it is easier.

When you add the fact the public seess carers as unsung heros who save the government money, a message cleverly crafted by the carers movement, I hope you can see there is a problem here. Your parents, partners and siblings can be wrong and can even hate you, but call them carers and everyone things they are wonderful and know best.

This is why I am on a mission to decare our nation and reclaim families as families. What I mean by this is  that the carer rhetoric has destroyed families, where power dimensions have been perverted. What we need to do is to focus on  family cohesion, ensuring a family can remain a interdependent unit.

A part of this is acknowledging not everything family members do for each other, like cooking a meal, can be regarded as an act of care, but rather an act of interdependency. Informal carers often spend far less time performing what social services would see as care tasks than they assume they do. Being a couple or family generally involves housework and other tasks.

Another issue is understanding those who are perceived as being ‘cared for’ often have a lot to contribute to the family, and it is important to recognise and support this interdependency, where people can be seen as caring for each other in different ways.

If we carry on supporting the carer rhetoric than we are legitimating a level of subtle abuse of choice and control. Family members who play a significant role of a sick or dysabled person’s lifes, whether as a child or adult, have to be equally trusted and distrusted as paid care workers, this is simply what I have always asked. People suggest that my healthy distrust is somehow personal,, it is not, it is a commitment to proper safeguarding of those more prone to vulnerable situations.

Do carers really know best? No, they are simply humans like the rest of us

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