Being Hatty: challenging paternalism and institutionalisation
When disabled people take control of our own care, dramatic things can happen. Hatty’s story of Self-Directed Support is a perfect example.
For any disabled person, having control over our own lives is important. As a community, disabled people have a long history of being institutionalised and lacking any autonomy over our existence.
And while many non-disabled people believe systemic institutionalisation is confined to the past, recent scandals like the abuse at Firshill Rise in Sheffield demonstrate that this is far from the case. Disabled people are still fighting for independence and the right to make decisions about issues as basic as where we live and what help we can access.
Self-Directed Support (SDS), a different way of providing social care, allows disabled people - including those with mental health problems - to assert our right to choose the support we get. Rather than being assigned a support worker or a care agency, or being told which support groups we can attend, we get allocated a pot of money to spend in the ways we know will help us.
Obviously, there are parameters preventing people from spending their allocated budget at the bookies or on vodka. But if, previously, a person was referred to a day centre they hated or had carers they didn’t even know performing intimate tasks, the money that would have cost can instead be spent on hiring their own personal assistant or on gardening supplies or a pass to a gym, if that would benefit their health and wellbeing more.
Hatty, who lives with schizophrenia, talks in this video about how having this kind of personal budget has changed her life.
Being able to direct her own life empowers Hatty to live in a way that benefits her mental health and wellbeing. Self-Directed Support enables her to take a holistic look at her life and no longer be at the mercy of a social worker or psychiatric nurse’s thoughts about what she needs.
Rather than having our autonomy overridden by well-meaning (or not-so-well-meaning) third parties, we get to say, “I would be able to be part of my community if SDS would pay for me to attend my local theatre group. I would be able to improve my health if SDS would pay for me to go swimming once a week. I would live with more dignity if I could choose who helps me in the shower. I would be able to work if my personal assistant could get me out of bed at 7am every day, rather than the ad hoc arrival times of agency care workers.”
Resistance to SDS tends to be based on the idea that disabled people aren’t the experts on our own lives. That we can’t possibly know what is best for us and need somebody else to make our decisions. But everybody should be able to express preferences in a way that others make an effort to understand, and those preferences should be respected.
Paternalistic attitudes to disabled people persist across society but allowing us to take charge of the care we receive is one step towards challenging the assumption that we need others’ approval. Self-Directed Support is an important tool, and Hatty’s story is a great example of it working well.
