Out of the darkness: A History of Huntington's Disease in Australia

Abstract

Huntington’s disease (HD) is a genetic neurological condition which has a profound influence on the families it affects. The symptoms of the disease are challenging – in addition, social forces strongly influence the way the disease is experienced. It has been a deeply stigmatised condition, and its presence was often kept secret. In this dissertation, I have explored both social and medical aspects of the history of HD, primarily in Australia, building on the work of two scholars, Peter Harper (UK) and Alice Wexler (US). By tracing the histories of HD families, I discovered that HD has been part of the fabric of life in Australia since the convict era, and that some families with the disease were well-respected in their communities, in contrast to narratives which have presented the stigma as inevitable. Wexler has previously shown that in the US, the degree of stigma faced by HD families has varied over time, and my research found this to be also true of the disease in Australia. The earliest descriptions of the disease in the US were mostly made by physicians familiar with HD families. My research revealed a similar story - two physicians who published on HD both grew up in an area of Tasmania with relatively high rates of the disease. The impact of eugenic thinking in the stigmatization of HD in the US, Germany and the UK was noted more than 20 years ago, though its impact in other countries has remained unexplored. Eugenics as a formal movement was not successful in Australia, however eugenic ideas formed part of the social discourse. I show through medical journal articles, items in the popular press and educational organisations how those with hereditary diseases were labeled as “unfit”, promoting stigma which contributed to it being hidden. Finally I describe how the disease began to emerge from “the closet” in the early 1970s, with families and researchers forging a new collaboration to search for treatments, support families and reduce stigma