This is a personal view, not the view of any organisation I have worked for. It is based on more than two decades of work in the independent living movement, and draws on the work and friendship of many disabled people. However, it does not pretend to represent anyone’s views but my own.

This quote appears in many books and training packs about direct payments, and I have used it regularly in presentations. I first heard it from one of the pioneers of direct payments in the UK, John Evans. But, as direct payments become more widely used, does it still hold true? Another of the pioneers, Philip Mason, gave me the title for this chapter. Speaking to a group of European activists, he said that the early days of campaigning for direct payments had been inspired by a dream, “… that disabled people would be enabled to fulfil their roles in terms of taking the opportunities society offers and meeting the responsibilities society requires”. At the end of his speech he exhorted his audience to “hold the dream” (Mason, 1999, p 22) to keep the link between direct payments and independent living a strong one. What made him feel the dream was under threat?

There are two forces pushing direct payments and the ideals of independent living away from each other. One is the brutal reality of budgets: trying to achieve independent living on a survival budget will never be easy. The other is the continuing dominance of the custodial model of care. Despite plenty of rhetoric to the contrary, the instinct of many community care professionals is to limit the risks taken by (and thus the autonomy of) disabled people.

Defining independent living

The Disability Rights Commission defines independent living thus: