Sir Terry Pratchett, Death, and Social Care

At the time of writing this post, the news have spread about three young men with disability who have died in social care settings: Connor Sparrowhawk, Thomas Rawnsley, and Nico Reed.

There is also the excellent initiative of the LB Bill and the recent launch of the Department of Health’s ‘no voice unheard, no right ignored’ consultation.

All this is familiar to anyone interested in issues of social care. Why mention them? With the news of the death of Sir Terry Pratchett, one quote from his work has struck me: It’s not worth doing something unless someone, somewhere, would much rather you weren’t doing it’.

All these initiatives are troubling to the status quo.

There is inertia at the heart of the system of social care. The passing of the Human Rights Act did little to change the legal position of persons with intellectual disability: persons with intellectual disability, when deemed to lack capacity, cannot exercise their human rights. The passing of the Mental Capacity Act was a minimalist intervention: it codified the legal position of the common law on best interests and the choice was made not to link the Mental Capacity Act with the Human Rights Act.

However, the issue is not just legal: what is adult social care about, in everyday practice? what are social workers trying to achieve? what are ATUs supposed to be doing? It’s all very well to talk about overarching aims, e.g. inclusion, independent living etc. I cannot see any tangible effort being made towards empowerment of persons with disability.

Radical change is required. Upheaval and mayhem is the way to go. The best interests test must be abandonded, in favour of a human rights test. The Convention on the Rights of Persons with Disabilities must be incorporated in an Act of Parliament and become part of English law. That will be the beginning of true change. And yes, it will cost the earth. Unless this happens and until this happens, disability rights will resemble new wine in old skins.

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