Squashed dreams and rare breeds: ableism and the arbiters of life and death

Abstract

The week beginning 29 June 2015 is not just historic for the closure of the Independent Living Fund in the United Kingdom, but for me was the week they decided that my life is not worth investing in; they being NHS England, NICE and, with them, the Department of Health. They chose not to support the enzyme replacement therapy that has been not only keeping me alive, but giving me a quality of life – enabling me to return to finish my Disability Studies PhD exploring how Christian leaders explain disability, where ethics have become the main topic, and to rebuild my career – or so I thought.