Independence doesn’t mean doing everything yourself, it means having your own choices.
The point is that independent people have control over their lives, not that they perform every task themselves. Independence is not linked to the physical or intellectual capacity to care for oneself without assistance; independence is created by having assistance when and how one requires it.
Jenny Morris recalls this definition from the independent living movement in the UK. I find this definition of independence inspiring. It gives a positive interpretation of people doing things for each other in everyday life. Rather than feeling bad that I need help to get up some steps, I can focus on how I can ask someone for support. It changes the conversation from whether you can or can’t get up steps, dress yourself, use public transport, or whatever – to a conversation about whether you have control over how these things are done.
I had a great conversation on twitter with Jenny Morris and Neil Crowther to discuss this further. One of the important things that came out was the specific nature of choices related to disability support. If you have choice over how and when you receive disability-related support then that will result in having choice over the important things in your life – where you live, if you work, where you go. If you can control how you get access to paratransit, say, or a personal assistant, then you can live something closer to the life that you want to live.
This perspective on choice is a vital impetus for the reform of disability support.
Provision of disability services can fail to recognise the choice of the user. Accessible transport or care only available for certain hours; or a service that treats all disabled people in the same way regardless of their needs. I face tiny, regular battles in life about people that want to give me a hand but start doing so without asking how. I find it really difficult to explain to to them that I am grateful for their consideration and upset that they didn’t ask me what would be best for me. This problem is a hundred times magnified in the face of services from charities or government – the “special” services for disabled people that we know we should be grateful for but often have limited choice about the way we receive them.
Choice, of course, isn’t a solution to everything. And actually choice is a much more complex area than it’s use in the attractive definition of the independence living movement. Jenny wrote that she would resist seeing limitations, and shared an important piece she wrote on different types of communication. I’d be interested to know what she thinks of something like the UK’s Mental Capacity Act which is a framework for precisely how to deal with limitations of ability to make decisions. Neil described choice as a means to an end – that of a self-directed life – rather than an end in itself. The right to choose is one right among others, and isn’t sufficient by itself. It doesn’t guarantee access to other rights, or eliminate all forms of discrimination. A choice between two evils is a choice but not one that improves what you had to choose.
But our work on disability policy has contradictory impulses.
On the one hand we reify choice, and “voice” of persons with disabilities themselves. What happens if someone wants to make the wrong choice? We probably agree that people, in general, should be able to make bad decisions. The Mental Capacity Act has the right to make an unwise decision as one of its principles. On the other hand, we often talk about the need for motivational or counselling support or capacity building of some kind – all things designed to bring about changes in people’s choices. In terms of policy and service provision we often try to limit, constrict or change people’s intentions in the face of risk, or someone not doing what we think they might be capable of.
In my own work in Bangladesh I take it for granted that many people with disabilities here, or their families, will have low expectations about what they can achieve. So much of what I recommend is based on trying to change these choices. In a focus group I held here, we asked a man what work he wanted to do. His response was “I can’t work, because I can’t see”. My reaction isn’t (just?) to respect his choice but also to try to change it. Disability services at their best provide transformative change. That includes changing the choices people make.