In this piece, Lucy Smith explores the power of knowledge in relation to the body, drawing on the case of Charlie Gard, the baby whose fate was the subject of a drawn-out court battle in the summer of 2017.
When I began to write this post for Researching Sociology, I couldn’t help but be reminded of LSE “alumnus” President Kennedy. Kennedy springs to my mind not for his infamously contested alumni status, but rather his words; “A man may die. Nations may rise and fall, but an idea lives on” (JFK Library, 2017).
As an undergraduate sociologist, this statement resonates with me. Perhaps mostly so because it demonstrates the power that knowledge has within our society. Make the next great “leap forward” in your field and you too might find your name enshrined within the pages of history. Or better yet, an institution such as the LSE might claim you’re an alumnus (despite the fact that you never officially attended or graduated).
Ideas indeed live on, and it is through his ideas that Michel Foucault continues to remain relevant within contemporary society. Despite his death in 1984, Foucault’s ideas were revived in the summer of 2017 with the case of Charlie Gard. Exceeding the parameters of medical ethics and debates about our “human rights”, what was revealed by Charlie’s case was the truly coercive power that knowledge has within our society. Knowledge, in this little boy’s case, is what defined the prolonging of his life and now the location of his death. Knowledge has distorted a bond that began in the womb; both Charlie and his parents were helpless – they were the subjects of knowledge, not the proprietors – and as such, they could do nothing.
Before I proceed any further, I want to establish an important point; my argument is not against GOSH, the courts, medical science or the legality of human rights. I do not dispute the realities or “truth” of expert opinion – rather, my interest lies in its coercive effects. The doctors’ knowledge of Charlie Gard’s body itself may have been an “object truth”, but it was not un-situated in the social world. The same, of course, applies to the Judges and their respective rulings.
For every triumph of medical science, every “great leap forward”, there are always cases where the situation of medical knowledge inevitably becomes complex and uncompromising. The more that we understand and “know” about our bodies, the more we become imprisoned by them. Perhaps these were Foucault’s sentiments in “The History of Sexuality, Vol 1: An Introduction” (1976); ‘biopower’ surrounds us even in the most implicit, menial ways. For instance, we are continuously advised to live “healthy and active” lifestyles, and so we feel guilt for indulging in simple pleasures such as a slice of cake or an hour spent watching the television. But for those of us who have chronic or terminal illnesses, such as Charlie Gard had, the feeling of imprisonment is even greater. In fact, it becomes a hellish reality that supersedes the feeling of guilt; our bodies are never truly our own, and we are caught in the fray between the battle of self and “patient”. To some this statement might seem ridiculous and the hallmark of western privilege, but this oppression is the daily reality of anyone who has ever experienced the pain of invasive medical treatment. Those of us with such conditions are continuously forced to suppress our own fears and anxieties, to surrender our bodies to blood tests, MRI scans, surgical procedures and the like. These tools, authorized in the name of expert opinion, are used to gaze into the fibres of our very being, and in return, we are estranged from our own bodies through the uncompromising power of medical analysis. Our reality is such that we may try to reclaim ourselves through storytelling (Frank, 1995), but ultimately our bodies are – and never will be – entirely our own.
Image Credit: (freestocks.org CCO)
But what of those of us who cannot speak? Who are quite literally without a voice of their own? Here the coercive power of the medical and legal tools of the state are truly revealed. In Charlie Gard’s case, he was a boy imprisoned in his own body by knowledge. Had Charlie been born in 1852, the year that GOSH was founded, his case would have been entirely different; for the knowledge that imprisoned him, both medical and legal, did not exist. Instead, Gard’s passing became the tragic conclusion to a drawn out legal battle in a “best interests” case. The baby’s “best interests” became the subject of a heated dispute between both medical and legal experts, disputing Gard’s right to experimental treatment – his right, both sides argued, to either an incapacitated existence or a peaceful death. By the time a decision was made on the 24th July 2017, Charlie’s opportunity to receive treatment had passed. The deterioration of his condition meant that he was no longer fit to receive the experimental treatment, and as such his life support was withdrawn. Much to everybody’s dismay, the “next great leap forward” had failed to transpire. Such is the power, but also the devastation, of ideas.
John F Kennedy Presidential Library and Museum (2017), An idea lives on [Accessed 7th November 2017] https://www.jfklibrary.org/Asset-Viewer/Fd36ChumR0iMuMZIL2_Y7A.aspx
Foucault, M. (1978) The History of Sexuality: An Introduction, New York: Random House [first published Paris: Éditions Gallimard, 1976]
Frank, A. (1995) The Wounded Storyteller: Body, Illness and Ethics, Chicago: University of Chicago Press.
Lucy Smith (@SmithLu_x) is a third year BSc Sociology student in the Department. Her interests include STS (Science and Technology Studies), the Sociology of Knowledge and Education, Social Theory (Contemporary and Classical), Continental Philosophy and the Philosophy of Social Science.
A well written piece that highlights the problems when medical ethics fail to keep up with advances in science. Reminded me of the problems that the mentally ill have to endure. Goffman. Asylums.