Why we should get anxious when people say they 'care'

Disability service organisations and the whole disability sector are on the cusp of massive changes. The National Disability Insurance Scheme (NDIS) has been designed to provide a level of entitlement to people who have a “severe and profound disability”, as defined by the National Disability Insurance Scheme Act (2013). This should translate to people with disabilities being able to enter the NDIS with a vision or plan for their lives and the supports required to achieve it. In practice, this should rebalance the societal positioning of people with disabilities and end the victimhood that often comes from being recipients of charity or “care”.

I have a Masters in Literature which was driven by an intense interest in language, because people were always pitying me as a child and saying to my parents, “poor thing…”. I sought, and found, a different way to understand the world through literature. My interest in feminism was also driven by the clear ways in which feminism understands that power and the locus of control is often kept from women by the patriarchal laws and societal systems in which we live.

The same can be said of disability, where the locus of control has long been held by governments, service providers and support workers (often called “carers”) and people with disabilities have been expected to be grateful and passive recipients of care.

The language used to describe disability in the late 60s, 70s, 80s, 90s, 00s and even now in 2014 is that of tragedy. This positions people with disabilities as broken things in need of fixing, and their parents, supporters or loved ones as long-suffering carriers of this societal burden.

This language will never lead to people being empowered. Think about the words we use to describe people who provide these services and how we use these words. There’s one word, which is often used that really disturbs me – that’s the word “care” or “carer”. If ever there was a bad “c” word, this is it.  

The use of the word “care” implies a paternalist relationship where one person, the “carer” is in a position of power over the person who is being “cared for”. It encourages people who see themselves as carers to “do to” and to “do for” the people with disabilities with whom they work. This puts all of the power with the ”carer” and conversely takes the power and autonomy to make decisions about what support is required away from the person being “cared for”.

What we should have is a system where services and supports are designed with people with disabilities. In this way of doing with, rather than to or for, we would always be placing the preferences of people with disabilities first and at the forefront of our work.

This is not to say that we should undervalue the attention and love that parents and supporters freely give to family members and others with disability. But we do everyone a disservice when we think of this as caring. These are appropriate acts of love. When my partners puts food in my mouth he does it with affection and attention to my need for nutrition and enjoyment. Whereas, when my support worker puts food in my mouth, they do it because it’s part of a job at which they are skilled and for which they get paid. Neither my partner nor support worker are required to do this because they “care”. If they did do it from a “care” perspective, I might never get to eat pork crackling, or the rich piece of dark chocolate cake, because they might make a value judgement that they knew what was best.

It has happened to me before. I once lived with a person who had mental health and substance issues. One day, they were having a bad day and drinking at breakfast. My support worker arrived to get me ready for work and I decided to shower and go out for breakfast – for a break. She decided that she “cared”, knew better than me and rang my service. I was forced to stay in a hotel for two weeks and get the person to move out. This “care” was not necessarily in my best interests.

In disability, we need a system that allocates resources to people with disabilities and their families. They will then use these resources to purchase support from service providers or support workers so they can have autonomy and choice about where they live, with whom they live, what they do and how they are supported. In this system, the support workers will be paid for the quality of the work they do – not paid to “care”.

That’s why when people who are not in any kind of relationship with me say they “care” I get nervous. Often they’re being paid to do a job. It might be a job I want them to do differently at times – if they “care”, they might not want to change how they do the job. Imagine if the support worker, who used come to my work on a Friday, help me eat dinner, take my bra off and ensure I had on clothes I could sleep in or get off, had decided they “cared” and I shouldn’t go out alone. That would not have worked!

And that is we should get anxious when people care.