The title of Gill Green's short but informative book is a question to which the resounding answer, however disappointing it may be, is "Don't know". Will stigma, like the poor, always be with us in some form, or will it, as Green suggests, begin to disappear through a combination of political and social response. The subtitle gives a clue as to the nature of the book. It attempts to chart through a small number of examples that attitudes towards and the experience of those affected by long-term illness is changing and continues to do so; but the final situation is neither clear nor resolved.
The first three chapters of the book lay out the theoretical framework of the study of stigma. The acts of naming and defining are considered -- is a person an illness, a diabetic or a schizophrenic, or a person with the illness? There is a point to be made about the nature of long term and chronic, and perhaps incurable conditions as opposed to short term and temporary ones. There are the key aspects of what stigma is -- including Goffman's seminal construct of spoiled identity -- and how societies bend and create their own versions. There are interesting sections that deal with mass media and popular culture. There are, also strong political dimensions to consider and the modern constructs of identity.
The next three chapters deal with, in turn, HIV/AIDS, substance misuse and mental illness. For many readers some of this territory will be familiar. But it may be a point to consider that while the addressing of stigma will certainly change the social experience of someone living with HIV/AIDS, it is not a therapeutic act in the same way as destigmatizing mental illness may be. A person who is suffering from a long-term mental illness may find that a recovery is made much more possible in the absence of stigma, indeed in the presence of anti-stigma action. We know that many of the social determinants of health, such as stable housing, employment, secure finances, social networks and so on, all have a profound impact on the mental health status. We also know that there are the very aspects of life that are most affected by stigma -- people are discriminated against and their social opportunities are reduced. Housing is difficult, suddenly the apartment isn't for rent anymore; disclosure of mental illness doesn't read well on a resumé; people who live on social security benefits by definition are vulnerable. So, it may be asked if the three test cases Green puts forward are significantly similar enough to come under the same analysis.
It can also be fairly asked whether this new book adds anything substantial to the literature. In many ways it may not, but it does provide a useful introduction to an important sociological issue in an accessible way. It would prove an excellent little book for undergraduates. And then there is one singular aspect that will make even a reader familiar with the area pay close attention and reflect.
Right at the beginning and again at the end, Green tells the reader that she herself was diagnosed with multiple sclerosis in 1999. She had experienced a strange numbness in her legs for a few weeks and had a little trouble walking, and then she was diagnosed. Just like that. She made a recovery but did suffer relapses, including, ironically enough during the writing of the book. This way of personally book-ending the text at once takes the reader by surprise (after all it is clearly an academic book, written by an academic for an academic audience) and also into another relationship with the author who is seen as a particular individual who looks outwardly with objective clarity and inwardly with some painful reflection.
It is rare to find a book that straddles these quite different genres in this way. It is perhaps true that most people who read Stephen Hawking know of his illness and wheelchair-bound life, they know the mechanical voice and so on, but Hawking is not reflecting on his physical condition. Green looks at herself, as one who is stigmatized, who does not have full citizenship in our world, and she also makes us look at others. This seems to be the more lasting effect of the book; perhaps more than the conclusion that it is through political action that stigma is best combated. It is a curiosity that although there are positive data to support anti-stigma campaigns and a greater cultural sensitivity, it is still the personal story that resonates. It validates reflective writing and analysis, although she does not make the claim, it validates the consumer voice. It provokes within us a greater understanding of the lived social experience of long-term illness, even though, or perhaps because it understates that intention.
© 2010 Mark Welch
Mark Welch, Ph.D., British Columbia